July 23, 2004

I was very frustrated when I wrote last night. After my weekly Herceptin treatment this morning, (4 years & 4 months of it!), I saw my doctor. He wants to keep me on Herceptin and add Faslodex. Ironically, I'm the one who proposed Faslodex because of a report I'd read that showed patients who had failed prior hormonal therapy may benefit from Faslodex.

He told me he went to a conference this morning where the topic was HER/2 positive patients who are ER+ and hormonal treatment stops working sometimes flip flop and treatments like Faslodex will work for them.

I really wanted to try a clinical trial because I've already had two rounds of chemo for metastatic disease and anything else would rule me out for a lot of trials.

Since I'm HER/2+, I've always been interested in EGFR and VEGF. I believe targeting as many pathways as possible can only be a positive. New drugs have emerged (and continue in drug manufacturers' pipelines) that target HER/1 as well as HER/2. Herceptin works on HER/2, Avastin works on HER/1, and a new compound, GW572016 (lapinitib) works on HER/1 & HER/2. So, I thought a trial with either of these drugs would be right for me.

There are no major cancer centers in Charlotte, and few clinical trials that I could find. So, I spoke with the research nurse at Duke University AND at UCLA today, and I do not qualify for any of their trials. There's nothing
going on with Avastin on this side of the country that I was able to ascertain, and the two different trials with GW572016--for one I haven't yet had Xeloda, and the other--I've had too much chemo already.

They wonder why adults don't enter clinical trials. I'll tell you why: you are expected to wade through all this material yourself when you're not at your best mentally. Then, make all the calls to see if you're eligible, and
get your hopes up for no reason.

So, I'm stuck with making a very important decision. It's all on my shoulders, and I wish God would reach his hand down through the clouds and make the decision for me. Do I continue on Herceptin and take the Faslodex shot and pray that my scan in 3 months shows improvement? Or, oops, should have tried harder to find a clinical trial?

I know you can't answer that for me, but I just wanted to share how hard it is to make this next decision which could ultimately determine whether I live or die.

Thanks for listening,

Debbie

July 22, 2004

My disease has progressed. Now, I have to decide what treatment I should have next. There are so many clinical trials--how to decide? Avastin? Iressa? GW572016? Then you find one you like, and it's only in a location on the other side of the country. They say more adults need to get into clinical trials? How about trying to be a patient and wade through all this mess and make a decision that could affect whether you live or die? I'm scared and frustrated tonight.

Debbie

July 19, 2004

Dear all,

After three maddeningly long days of waiting, I finally got my PET scan results of a week ago.

I thought I was finished with chemo for a while, but I guess I was wrong. After six rounds of carboplatin / taxotere / Herceptin / Zometa, my mets are roving. They were doing another PET scan to compare with the one I had in February to see if chemo/radiation worked. But SOMEHOW they didn't scan my left femur which showed cancer spread in February!

The lymph nodes in my mediastinum (between my lungs) have improved except for one which has now increased to 15 mm. In addition, it reported a new 1cm supraclavicular (above the collarbone) lymph node and a lung nodule in each lung (12mm and 9mm).

My guess is that Dr. Chapman will want to start something new when I see him on Friday.

Debbie

July 12, 2004

Today, I had a follow-up PET scan at CMC. I'm sitting on pins and needles!

Debbie

June 14, 2004

Hi all,

My radiation to my leg ended in March. It's been 3 months now, and that thigh is very stiff. All the muscles are tight, like if I try to cross my legs or bend over. It's the thigh, hamstring, glutes. I'm guessing this is
probably radiation damage to the muscles. I've taken to calling it my beef jerky leg.

I get tired of complaining to the doctor every time something new comes up, but there's always something new that I haven't experienced.

Take care,

Debbie

June 9, 2004

Well, here I am home from the hospital after yet another test. I know my family is so sick of all my complaints. I know I AM!

Over the weekend my legs and feet started to swell. It has not gone down, in fact, the swelling is getting worse. It is in both legs, particularly my left ankle and foot, but my legs as well.

Today, I got an ultrasound of my legs. They were looking for DVT (deep vein thrombosis) as a cause for my swelling legs. None found, thank goodness.

Now, I am to be put on Lasix and potassium supplements to get rid of the swelling. So you know what I'll be doing tomorrow :)

I do get sick and tired of being sick and tired. I mean, my kids had their last day of school today and I couldn't even pick them up because I had to be at the hospital.

The doctor thinks I'm probably swelling from the taxotere. If so, how come it took five rounds to happen? And the fifth round was reduced by 25% because my blood counts were so low. Sigh.

Thanks for letting me vent!

Take care,

Debbie

June 2, 2004

Just to let you know, my blood counts have been way down. My doctor gave me chemo last Friday, but reduced the dosage by 25%. I went in for a blood test today because all I've done is slept for five days! All of my counts are down. They gave me an Aranesp injection (new for me) which really hurt. And I let them know it!

I almost passed out today in a store, so I'm at home trying to take a nap.

Debbie

May 15, 2004

Here is my latest update:

The pulmonary doc ordered a CT scan of my lungs. It showed a small nodule on my right lung that is unchanged from the last CT scan. Actually, I think it has been unchanged for quite some time. I'm going to ask Dr. Chapman to look back at my CTs and see how long that nodule has been there. If it was cancerous, surely it would have grown or shrunk by now. The CT did not show the paratracheal lymph nodes which showed as cancerous on my PET scan in February. So, I still think I need another PET scan to see if those nodes have shrunk and how my left femur is doing. This is all very positive. No other cancerous stuff was shown on the CT.

My tumor markers went from 60 four weeks ago to 50 now. The high end of normal is 39, so I'm almost there!

I think I owe my success this time to God, most certainly. But also, I've been getting acupuncture and Chinese herbs. What I decided is that even if chemo makes all the cancer go away, what is to prevent it from coming back? If I resume my lifestyle, presumably that is what caused the cancer to grow in the first place. I feel that chemo treats the symptoms of some underlying cause. The doctors cannot treat the cause. So, I decided to give traditional Chinese medicine a try.

The ONLY downside is the cost. As you know, cancer treatment is very expensive. We have really crummy insurance. Everytime I walk into the doctor's office I have to pay $40. I pay 10% of everything at the hospital, AND a few of my prescriptions have a $45 copay. Now, factor in $75 for the acupuncture. The doctor I see is a fourth-generation physician from China. He has very impressive credentials. But, acupuncture is not covered by insurance. He feels I need to be seen twice a week, which would be $150 a week. I told him I could only come once a week and even that's stretching our already thin budget.

Nobody ever said that cancer is cheap, right? Ha Ha! I guess if this hadn't been an ongoing thing for 4 1/2 years now, it wouldn't be so bad. But, it gets tough sometimes. Well, I can't lie. A LOT of times. My faith pulls me through.

It's strange that I'm not worried about my cancer. I know that God's will will be done. I am very much at peace with whatever will happen. I'm handling everything very well. My journey with God has only strengthened and deepened over the years. I am thankful for that.

And, I am thankful for wonderful angels like you.

God bless,
Debbie

May 14, 2004

Hi everyone!

I had a CT scan right before I left for DC last week. The report was about 3 sentences long. There is still a small nodule in my right lung, but it has neither grown nor shrunk. I think it has been there for some time now, which makes me question whether it is cancerous at all. My last CT in December did not show the malignant paratracheal lymph nodes that my PET scan did. This CT didn't show them either. I'm not surprised--and that's why I will be pushing for a PET scan when I see my doctor next week.

And the best news is that my tumor markers went from 60 four weeks ago to 50!!!!! They are on the way down. The chemo and/or acupuncture are working and I did the happy dance yesterday when I heard the news.

I'm off to the hospital for my weekly Herceptin this morning, glad that treatment is still working for me. Praise God!

Have a great day,
Debbie

May 6, 2004

Boy, am I tired! I got back from the IBC symposium and NBCC conference Tuesday night at 9:30. Tomorrow morning, I have chemo (carboplatin/taxotere/herceptin) and then go to Myrtle Beach for a dance competition. I'll try to sum up my experiences here:

Thursday night, a group of us met up and went to dinner. It is so nice to be with a group of people who are passionate about the mission of the ibcRF to eradicate IBC through awareness and research.

Friday afternoon, we went to George Washington University (my first time on a subway!) for the IBC mini-symposium. There were four speakers who filled us in on the latest in research in IBC. There were differing opinions on whether IBC should be considered a rare disease, but all agreed that it is unusual. We heard an historical perspective of IBC, how it is diagnosed, and the differing opinions of what constitutes a diagnosis! The last presenter was a basic scientist, Dr. Lazlo Boros from UCLA who spoke of his work with IBC cells and how they differ in many ways from any other cancer cells. The conclusion was that more research needs to be done, in order to duplicate Dr. Boros' results, and with different IBC cell lines.

Saturday was the start of the National Breast Cancer Coalition's Annual Advocacy Conference. This was a two and a half day conference. There was a lot of energy. The NBCC focuses on evidence-based research and pursuing a very specific agenda for eradicating breast cancer through research. This was not a ground-breaking year. No Dr. Larry Norton saying breast cancer would be eradicated in 10 years. No hot topics like the mammography debate, no new drug breakthroughs. All in all, it was a bit disappointing to realize that we have so much yet to learn and do before we can cure cancer.

But, we had fun and learned all about NBCC's legislative priorities. For more info, visit their website at www.stopbreastcancer.org

Then, on Tuesday we boarded buses to Capitol Hill where we broke into groups by state and visited our Representatives and Senators (mostly their healthcare legislative aides). We pushed for funding of the DOD breast cancer research program. We worked to get signatures on a bill that would study a link between breast cancer and the environment. All good stuff. I made some new friends, and got to spend time with some old ones.

This is one time of year when I actually feel like I am doing something in the fight against breast cancer. I feel that I am an important role model for my children, and will encourage them to take action as well. I encourage you to look into joining us next year.

A special thanks to IBC Research Foundation. We are no longer a complete unknown. I believe the message is getting out there. Keep it up!

Take care,
Debbie

April 30, 2004

I was nominated to the board of directors of the IBC Research Foundation in December, and we had our annual in-person board meeting today in Washington DC. I am thrilled to be able to do something constructive to help find a cause of this disease.

Later in the afternoon, we held the first IBC Mini-symposium on IBC at George Washington University. More on that later.

The annual NBCC advocacy conference and lobby day begins tomorrow. I was able to get Dr. Chapman to agree to move my chemo back a week so that I could go to DC for these conferences. I am pumped!

Debbie

April 23, 2004

Tuesday, I went to a pulmonologist because Dr. Chapman said the week before that I was wheezing. Long story short, last year I went to a doctor who told me I had asthma and sent me home with a rescue inhaler, nebulizer, the whole works. I felt that I didn't need that stuff and threw all the medicine out. Well, here I am coughing and coughing a lot, just like last spring. So, I went to the lung doctor on Tuesday like Dr. Chapman wanted. This doctor told me that he only heard problems on the right side, the left lung was clear. He is concerned that the cancerous lymph nodes between my lungs may be pushing on my right lung causing my problems. But, he said, we can hope it's just asthma. Can you believe hoping for asthma! Ha Ha! Anyway, he wanted to schedule me for a CT scan to see what's going on, and possibly a bronchoscopy.

I'm used to getting things moving along fairly quickly and by this morning, still didn't have an appointment for the CT scan. Can you believe their scheduler is out until Monday? UUGH!

Anyway, next Thursday I leave for Washington DC for my annual National Breast Cancer Coalition Advocacy Conference and lobby day. I'll be there until the following Tuesday, May 4. So, Dr. Chapman moved my "big" chemo back a week for me so I could attend and not feel too yucky.

Now I'm having the carboplatin & taxotere on Friday, May 7 in the morning, AND THEN we have to drive to Myrtle Beach that afternoon for a dance competition. Brant said he'd take Haley to Myrtle Beach, but I said I can feel lousy just as well at the beach with my toes in the sand as at home! We'll be back Sunday night, on Mother's Day.

Then, I should have another PET scan as it will be after my fourth treatment. I'm hoping for good news.

Thanks for all the wonderful thoughts and prayers.

Deb

April 14, 2004

Hi all,

I'm still feeling lousy from chemo. This is day 5 of my 3rd round of carboplatin/taxotere. (Still following me?) I'm sure tomorrow will be better. Each day is a bit better, but I can't stand that overall yucky
feeling. Anyway, my nurse called to tell me my tumor markers (CA 27-29) are down to 63 from the 69 they were 3 weeks ago. Can you believe I was almost disappointed? I was really hoping for a dramatic reduction, but I'll take
what I can get. At least it is in a positive direction.

Take care,
Debbie

Saturday, March 27, 2004

Hi gang,

I completed radiation on my leg a week ago, and so far, so good. I think with it being 14 treatments instead of 30 (for breast), I've had no skin breakdown, and no real side effects to speak of. I just noticed this morning when I was going upstairs that my leg doesn't hurt anymore. So that's obviously a good sign.

I had my second round of carboplatin/taxotere a week ago, and I've done fairly well with it. I tell myself each morning, that every day is a little bit better. And it's true! Here it is 8 days later and I feel almost normal again. I had my Herceptin and Zometa yesterday. It's hard to keep up with four different chemos and three different treatment schedules.

My tumor markers went up from 60 at the beginning of treatment to 69 last week. However, we are hoping it just hasn't caught up to the treatment yet, and it will go down. That's the plan anyway. I'm to have tumor markers drawn every 3 weeks. After two more carboplatin/taxotere treatments, I will have another PET scan to reassess.

Yesterday, I went to an acupuncturist. He's a medical doctor and a licensed acupuncturist. His lineage goes back several generations where his father was a royal doctor in China. I decided I wanted to get some help with my side effects of treatment, so I started acupuncture. Then, I was given two bags of herbs to decoct and drink as a tea. You'd have to see it to believe it. But, after the treatment yesterday afternoon (and this was after my Herceptin & Zometa treatments), I feel better. It may be a placebo effect, who knows. But I do feel better.

I hope everyone is doing well.

Debbie

Friday, March 26, 2004

Today, I had my first acupuncture appointment with Dr. Li. I decided to give it a try, since other treatments aren't working so well. I found it very relaxing, and not painful as I thought it would be. He gave me a bag of chinese herbs to cook down into a tea and drink. It looks like a bag of sticks, bark & leaves (which it probably is!). He wants me to come twice a week. Of course, insurance doesn't pay for it. First appointment was $90 and each additional appointment is $75. So, I'll try it for a while and see if it helps (or until my money runs out ;)

Debbie

Wednesday, March 24, 2004

Today, the nurse called with my CA 27-29 tumor marker results. They went up nine to 69. I know I’m not supposed to worry about that. It’s only been one treatment before this test, but it’s hard not to worry, you know? Everyone tells you it will be fine, but what if it isn’t fine? They will all be in shock, and I will not because I’ve thought about every option.

Keep in mind, that the CA27-29 seems to be very sensitive in my situation. My tumor markers almost doubled in the past 3 months, and new mets were found to the bone and lymph nodes. I know I need to wait until I've had more chemo to see what the trend is with regard to my marker, but it does shake me up a bit.

Just had to share,
Debbie

Wednesday, September 1, 2004 8:58 AM CDT

Friday, March 19, 2004

Today, I had my second round of carboplatin / taxotere / herceptin. They also drew tumor markers and I am anxious for the results. It went well. Of course, I wasn’t looking forward to treatment, but I will do what I have to do to get back in remission!

Shelby Stout came today to bring me a meal. Me! Shelby is the mother of Hope, the 12 year-old who died in January of osteosarcoma. Hope reached so many people with her selflessness and faith in God. When Make A Wish came and asked her what her wish was, she replied that she wanted to raise enough money to grant the wishes of all the others on the list. That was 155 children, or roughly a million dollars. AND they did it! Sadly, it was a couple of weeks after Hope died, but her wish was granted. She made such an impact on people’s lives. What an incredible inspiration she was and is.

I can’t believe that Shelby brought me dinner. I don’t know that I could be that selfless. I have to admit, I feel selfish at times because I’m going through treatment, and my focus is there. I’ve heard of others who are ill and want to send them a card, and haven’t gotten around to it. I think about them and pray for them, but when it comes down to actually doing what I want to do for them, I haven’t been as successful as I'd like to be.

Well, off to sleep now.

Debbie

Thursday, March 18, 2004

I had my last of 14 radiation treatments today! I was excited not to have to go anymore.

Radiation hasn't been so bad, but I've been tired. Basically, I would go into a room, lower my pants and get covered by a teeny tiny towel. They radiated a large rectangle on my left thigh. Even though the cancer was in the femur or long bone of my thigh, the pain I've had was in my hip. So to be on the safe side, the radiation oncologist included the hip in the radiation field. They would get the machine lined up and leave the room. The machine turns on with a slight hum and it's like getting an x-ray for 30 - 60 seconds. You don't move, but you can breathe normally. I usually pray during that time and thank God for all of my blessings. Then, they would come in and the machine rotated to the back side of my leg, and they would do the whole thing over on the other side.

And now, I'm done with that!

Deb

Wednesday, March 17, 2004

I haven't lost my sense of humor. Today is St. Patrick’s Day. So, I wore my dreadlocks wig that I got in Jamaica with my leprechaun hat on top of it to radiation. Everyone laughed. They took a picture, and it was quite funny.

Debbie

Monday, March 15, 2004

Today is the 4th anniversary of my mastectomies. I am kind of sad, remembering this day. Also, I had a haircut today and my hairdresser told me I should buzz it off, since it is now coming out in clumps. I did that, and Christopher was scared of me. He told me so. But I think he’ll get used to it.

Deb

March 14, 2004

I wanted to tell you all what happened on Friday. I picked my kids up from school and got home at 2pm. My husband was there (which isn't all that unusual because he is in sales and can make his own hours). I wanted to go upstairs and take a nap (after a morning of radiation and Herceptin). He
told me to wait a few minutes before going up but wouldn't say why.

A few minutes later, my daughter's 3rd grade teacher and assistant teacher came to the house. They had a huge, beautiful bouquet of flowers with them, and a laminated book.

It seems Haley told her class that I had cancer, and they decided to take me on as a service project. Each child brought one flower (or more) and they made them into a bouquet. Then, they each wrote me a get well card, and the
teachers laminated them into a book. Haley even drew a pink ribbon on the chalkboard so the kids would know what it looked like, and they all included that in their cards.

That was just amazing, and I had to share.

Take care,
Deb

March 13, 2004

Well, today is day 14 since carboplatin / taxotere / zometa / herceptin, and I can pull out 10 or so hairs at a time. I must have mental problems, because I can't help myself from pulling out my hair. I'm glad I already have a haircut appointment for Monday afternoon. I just hope I have some left for her to shave off!

On another rant, prescriptions, copays and deductibles are so outrageous. I'm paying around $150 a month for my portion of prescriptions. Every time I walk into a doctor's office, it's $40--and I have to go often! I am so grateful to have insurance, but the out of pocket costs are really hurting. Plus, dealing with the filing of insurance and hospitals calling me all the time is an added stress I really don't need. There should be someone to help you deal with the financial side of cancer.

Debbie

March 8, 2004

My white blood cell count went from 1.9 on Friday to 1.8 today. So, they started me on antibiotics. I have to call the doctor tomorrow to find out why, because no one has told me!

Debbie

March 6, 2004

I'm sick, sick, dog sick. Vomiting, diarrhea, and neutropenia. My white blood cell count is at 1.9 and low end of normal is 3.4. I've been sleeping a WHOLE lot. Taking lots of warm baths (it soothes my tummy). I think I have the double whammy with radiation and chemo. Today, I was not so nauseous, so it's getting better. I have to go back to the doctor on Monday for blood work to check on my white count. I keep reminding myself that every day is a little bit better than yesterday.

Last time I had chemo, I was given 8 days of neupogen injections to increase my white cell count. This time,
nothing. So, I haven't had to experience this type of fatigue before. Now I'm being told that I can't eat raw fruits and veggies. I'm putting hand sanitizer on everything. I even joked that I was going to put it on my kids' lips before I let them kiss me!

Sorry I haven't written more, but I haven't been feeling very well. Thanks for caring. I know the chemo is doing the trick and my body just needs to conserve energy for the fight.

Love,
Deb

Monday, February 23, 2004

Hi y'all,

I met with my oncologist this afternoon. I definitely have an osteolytic metastasis (spread of cancer) in my left femur, but it appears to have been caught early (little to no degradation of bone, only bone marrow). He wants me to have radiation on the leg so I meet with the radiation oncologist Wednesday morning. Boy, that's fast!

At the same time, Dr. Chapman wants me to start a new chemo regimen. Brant and I told him that I want to go back on weekly Herceptin, because both times I've recurred have been after I went on every 3 week Herceptin. In addition, I'll be having Zometa (an IV drug for bone metastasis from cancer) once a month. Then, the big boom. I'm to have carboplatin and taxotere. This starts this Friday.

So, radiation on Wednesday, Zometa, Herceptin, carboplatin, & taxotere this Friday. The Carboplatin & Taxotere will be every 3 weeks for four cycles, then we'll assess.

Looks like I'm going to lose my hair again. I'm wondering what kind of side effects I can expect. I don't expect to be able to taste food for several months, so I'm going out to eat the night before chemo for one last good meal!

Debbie

February 19, 2004

I just got a call from my oncologist. It's not good news.
My cancer has returned. My doctor just called to tell me that I have 3 lymph nodes in the middle of my chest which show increased cancer activity from the last PET scan 14 months ago. (By the way, these did not show up on any of the CT scans I've had in the last year). In addition, the pain I've been having in my left hip is most likely caused by cancer in the femur (bone). I had an X-ray this afternoon at the hospital to see how far the cancer has spread in the bone.

Then I see Dr. Chapman on Monday at 2:30 for a game plan.

If ever there was a time for prayer, it is now.


Thanks,
Deb

February 18, 2004

Hi everyone.

Last Thursday, I saw my oncologist for my routine 3 month checkup. My tumor markers almost doubled from 34 to 60 (which in my case could be significant). So, he ordered a PET scan ASAP. In addition, I've been having lots of pain in my left hip. Hopefully the PET would find out if it is cancer-related. The scheduler made the PET appointment for March 8. I told her that was too long, that the doctor wanted it done right away. She consulted with another doctor in the group who said the March 8 appointment was acceptable. I, of course, disagreed and told her to speak with MY doctor. And after talking to him, it was moved up to Tuesday (yesterday).

I had my PET scan yesterday. I thought I'd share the procedure since I had asked questions about what was involved. A PET scan involves injecting radioactive sugars into the body. Tumors take up the sugar much faster than normal cells, and the PET scan will show what they call "hot spots" of cancer acitivty.

So, they started an IV and told me I'd have to remain perfectly still when they injected the radioactive stuff so the sugar could settle in my body. If you move around, it could cause the muscle that's moving to take up more sugar, and make the test harder to read. So, I told them to give me a sedative if they expected me to remain calm. They gave me 10mg valium, which I don't remember having before. I'm pretty sure I started snoring!

Anyway, after sitting (sleeping) still for 30 minutes, they gave me Lasix to make me urinate. They wanted me to go at least 3 times before starting the scan. Reasoning is they wanted the excess radioactive stuff out of my bladder so the test would be more accurate. That took about 45 minutes. Then I had a CT scan, then moved to another room for the PET scan. They said they use the CT scan to match up anatomically with the PET scan.

So, all in all, not a bad procedure, just long. It took about 3 hours start to finish. My onc said he wanted to see me in 2 to 3 days after the scan to discuss results. So, of course, his office hadn't made me an appointment, so I called them and they told me he couldn't see me until Monday afternoon. That's 6 days later!

I took the appointment, because these scheduling people are clueless. I figure I'll call the triage nurse today and tell her that it is unacceptable to make me wait six days. I expect results tomorrow or Friday. They have probably already completed the report, you know? If they were the ones waiting, they sure would hurry.

My hip is still hurting--hopefully it's just sciatica. Imagine hoping for something like that! I try to stay positive, but I know how insidious this IBC can be. I'll let you all know when I hear something.

Take care,
Debbie

February 11, 2004

I got my 3-month tumor marker results today. My CA-27-29 went down to 34 in November. I was taken off Navelbine (due to neuropathy) and put on Aromasin. Now, 3 months later, my CA 27-29 has gone up to 60.

I see Dr. Chapman tomorrow, and I figure he'll say lets do a PET or other type of scan to see what's going on. I just needed to share because I'm having a slight panic attack right now.

Take care,

Debbie

January 5, 2004

Hope died yesterday. Little girls aren't supposed to die of cancer. Hope Stout was the daughter of Christopher's preschool teacher and part of our church family. She battled from last summer until now with osteosarcoma. Her incredible faith in God inspired everyone who knew her, and through her Make a Wish wish, thousands more found out how strong and giving a little girl could be. When Make a Wish asked Hope what she'd like, she wanted to grant the wishes of all the other kids on the list. Thus began an incredible campaign to fulfill Hope's wish.

My heart is aching for Hope's family, even though I know she is not suffering anymore. Please pray for her family.

Love,
Debbie

December 25, 2003

It's funny the anniversaries we now celebrate. A year ago, on Christmas Eve, I had a PET scan. The day after Christmas, I was diagnosed as having my cancer spread to my lung and three lymph nodes near my lung. I went to MD Anderson for a second opinion, came back home and started 10 months of Navelbine with my weekly Herceptin.

I'm here to say that a year after being diagnosed Stage IV and four years after my initial diagnosis, I am alive, in remission, and doing well. I had a follow up CT last week which showed my lung lesion is stable at 9mm and may or may not be cancer. My lymph nodes are clear. A small nodule showed up in my liver, but that's happened on and off these past four years. Apparently, you can have small
nodules that have been there your whole life show up on scans sometimes. As long as my tumor markers remain down, and nothing is growing, I consider that cause to celebrate.

So, in this season of celebrating Jesus' birth, I need to celebrate my survival.

But, I also reflect on the many, many dear IBC sisters we have lost this year. The first two women I'd ever met in person with IBC both died this year. Several strong ladies I'd considered friends in our online group have died.

Although every person we've lost is one person too many, I couldn't help but notice on an IBC memorial website that the ages of those who've died this year from IBC range from 93 years old to 16 years old, with the average age being 52 (out of 80 given). And although it isn't noted, I'd bet there's a wide range of races and cultural backgrounds, too. This strikes home the fact that IBC doesn't discriminate.

I give thanks to God for those of us who are still here, struggling though some of us may be, and I pray for comfort for the families of those we've lost.

Best wishes,

Debbie

November 13, 2003

I had to share... Had a checkup with my oncologist today and my tumor markers went from 49 to 34 in two months!!!!! We had discontinued the Navelbine because of neuropathy, switched back to Herceptin every 3 weeks and added Aromasin (hormonal therapy). It seems to be working. Woo Hoo!

Debbie

September 18, 2003

I am so mad at this disease right now.

Andi Collins, 16 years old passed away peacefully this morning,tragically losing her battle with inflammatory breast cancer. A 16 year old shouldn't have to be dealing with breast cancer in the first place!

I hope Andi's family will find some way to find comfort in her passing--no more chemo, tests, suffering. I can't imagine what they must be going through.

Debbie

September 17, 2003

Had to share--

I saw my oncologist today for my 3 month follow up. CT scan was as good as it could be--my 9mm nodule in the lung is unchanged and the radiologist described it as non-calcified which I take to mean non cancerous. My tumor markers are going down. It went from 60-something to 49.

We discussed stopping the weekly Navelbine and returning to Herceptin every 3 weeks, and including Aromasin (hormonal treatment). Needless to say, my feet would appreciate stopping Navelbine, and my poor skin over my porta cath would appreciate a 3 week rest. I've been on some type of chemo continuously since Dec. 1999!

Debbie

September 17, 2003

Had to share--

I saw my oncologist today for my 3 month follow up. CT scan was as good as it could be--my 9mm nodule in the lung is unchanged and the radiologist described it as non-calcified which I take to mean non cancerous. My tumor markers are going down. It went from 60-something to 49.

We discussed stopping the weekly Navelbine and returning to Herceptin every 3 weeks, and including Aromasin (hormonal treatment). Needless to say, my feet would appreciate stopping Navelbine, and my poor skin over my porta cath would appreciate a 3 week rest. I've been on some type of chemo continuously since Dec. 1999!

Debbie

August 29, 2003

Hi,

Just finished my interview with the NBC reporter (and chemo, too). It went well. But, I don't feel like I covered everything I wanted to. Nerves got in the way, I guess. She asked me about the symptoms of IBC. She has the IBC Research Foundation website info, brochure, business card, you name it. She also said that she will post the IBCRF toll free number at the end of the piece.

She interviewed my daughter. My kids came to chemo with me. Haley is 8 and did really well. She told the reporter that we do breast cancer walks to raise money and that when she was younger she wanted to be a scientist to find a cure for breast cancer. 5 year old Christopher just ran around with surgical gloves on his hands!

It will be on September 6 on WCNC Channel 6 in Charlotte, NC for their monthly Buddy Check 6 program. I'm going to try to find a way to tape it, and I'll let you all know how it looks!

Debbie

August 28, 2003

There is hope! I was diagnosed with mets to my lung and lymph nodes in December 02, and started on weekly Navelbine/Herceptin in January of this year. My last scan in June showed a complete response to the chemo. I am still on it.

I have had very few side effects. I still have the hair on my head, although my body hair has thinned somewhat. Kind of strange!

I have very mild neuropathy in my feet. My toes feel numb sometimes, and normal other times. For the neuropathy, I take 100mg of vitamin B6 twice a day (with my oncologist's blessing).

My hemoglobin level seems to want to remain just below the normal range, so I get a Procrit shot every week.

The chemo takes about 2 to 2 1/2 hours a week. Sometimes, I get slightly nauseous, other weeks, I don't.

So, it's a good idea for me to have nausea meds on hand.

I do my chemo on Fridays so I have the weekend to rest up if I need it. But, I most often am able to do just about everything I need to.

The first couple of months, I was pretty tired after the chemo, but I think I've adjusted to it. It's been 7 months, and I'm doing fine.

Take care,
Debbie

July 29, 2003

Here’s a letter I wrote to Kara Finnstrom from WCNC for their Buddy Check 6 program:


Dear Ms. Finnstrom,

I was wondering if you've ever done a story about Inflammatory Breast Cancer
(IBC)--the rarest, most aggressive kind of breast cancer. It has a high
recurrence rate, and low 5-year survival rate of 40%, and often strikes
young women. Symptoms are easily misdiagnosed as breastfeeding problems.

I was diagnosed 3 1/2 years ago at the age of 34 while nursing my baby. I've
had surgery, radiation and 3 ½ years of chemotherapy. I am currently on
weekly chemotherapy and fighting IBC's spread to my lung.

I've always been a person who is deeply and actively involved in issues and
causes. Following my diagnosis, I found my pre-diagnosis and treatment
activism was simply training for a new calling.

I am dedicated to educating women about surviving breast cancer. I provide
peer counseling to newly diagnosed women, referred to me by local doctor's
offices and organizations, and have spoken to many women's groups about
breast cancer. I am a member of the IBC Research Foundation and
Vice-president of the Breast Cancer Coalition of North Carolina. I've also
had the privilege of serving on US Representative Sue Myrick's breast cancer
task force for the past 2 years.

If you would be interested in hearing more of my story, I would be happy to
share what I've accomplished in the last 3 1/2 years, while continuously
being on chemotherapy. Because I believe that the ultimate answer is to find
a cure for breast cancer, I am strongly committed to research funding. I've
been an advocate on the local and national levels, and have successfully
lobbied Congress several times for breast cancer research dollars and health
care legislation.

To find out more about Inflammatory Breast Cancer, check out the IBC
Research Foundation website at http://www.ibcresearch.org

Please feel free to contact me if this sounds like something you'd be
interested in covering.

Take care,

Debbie McKinney

July 10, 2003

I saw my oncologist yesterday for my 3 month checkup. As expected, he is happy that my CT shows no active cancer. However, my tumor marker test has risen. It was in the 40's in January, the 50's in April and now the low 60's. Still not a huge jump, but enough to be concerned.

Lucky me, I get to continue the Navelbine and Herceptin. In 3 months, we'll rescan and do tumor markers to see what's going on.

It's kind of hard to know that there's something going on in my body that's just too small to see right now. If I took a lot of time to think about it, it would drive me crazy. So, I choose not to. But, I sure wish there was something I could do about it.

Before being diagnosed with mets (metastases) in 12/02, I was taking a huge amount of supplements. I quit when I started taking Navelbine because I didn't want to protect any of those darned cancer cells. I also discontinued hormonal treatments at that time. So, now I'm wondering if I'm sitting here all defenseless from those estrogen-loving cancer cells. I'd like to add a couple of my supplements back, but don't know where to turn to find out if it will be good or bad. More questions without answers!

Debbie

July 8, 2003

My oncologist called today to give me the results of my tumor marker test. I have had this test in January, March, and now. They have risen each time. My counts are in the low 60's now.

The odd thing is that I just reported a great CT scan last week to you. There doesn't look like there's any cancer right now.

I see Dr. Chapman tomorrow for my 3 month checkup. On the phone today, he said he would want me to have a bone scan. And, he would want me to continue on the Navelbine/Herceptin.

Thanks so much!

Debbie

July 2, 2003

Hi all,

I finally got my three month scan results late yesterday afternoon. I still have a 9mm nodule in my right lung that remains unchanged. Of course, that could be anything, but likely not cancer if it hasn't changed in 3 months. No other adenopathy noted!!!!!! The navelbine/herceptin is working!!!!!!

I'm doing the happy dance.

One more note, every time I ask for prayers or assistance, you guys overwhelm me with love, and for that I am forever grateful!

Debbie

May 12, 2003

Hi all,

I'm just now able to write about my annual trip to the NBCC conference, because when I got home on Wednesday, I had to turn around and go to Myrtle Beach for 3 days for my daughter's dance competition.

I was not my usual self this go around. Usually, I'm funny (I hope), like to dance and laugh and socialize. This year, being anemic and on Navelbine and Herceptin proved to me how much treatment can affect your life. I was flat out exhausted most of the time, and spent some of the sessions in my hotel room taking a nap.

Lobby Day was good, but tiring as well. This was my first year as a Team Leader--meaning I had training by the NBCC so that I could lead a delegation on Capitol Hill. I was the spokesperson for our group. North Carolina doesn't have many people at Lobby Day, so in several instances, I had to visit a Congressional office by myself. Also, until you go, you don't realize that you will be going back and forth from building to building for these appointments. I went to four Representatives' offices and our two Senators' offices. What a day!

But, at the Congressional Awards Reception, we got to hear tangible results of our efforts. NBCC's 2nd priority is getting Congress to approve $175 million for the Dept. of Defense Breast Cancer Research Program. Our job was to get the Reps & Senators to sign on to a "Dear Colleague" letter which is like a vote of confidence for a bill. The lead signer, Rep. Nita Lowey of New York told us that by the end of the day, she had over 25 phone calls from Reps. wanting to sign on to the bill! So, it does work. And we all know that we won't find a cure for cancer without research dollars.

This was a very worthwhile trip.

Take care,

Debbie

March 11, 2003

I had my routine CT & MUGA scan today. Of course, they were fine. I'm beginning to believe that a PET scan is the only way to determine if it's cancer, and we haven't done another one of those yet.

Debbie

January 17, 2003

I began my new chemotherapy regimen today. Weekly Navelbine with weekly Herceptin (switched back from every 3 weeks). So far, so good. I can handle this!

Debbie

Friday, January 10, 2003

Hi, I'm back from MD Anderson. In case anyone was wondering, I left the day before the plane crash here in Charlotte, and returned the day after. We taxied to the terminal right next to where the plane crashed. It was kind
of eerie.

Houston was great. You could get really fat there. Lots of great restaurants. Now, on to my experience at MD Anderson:

Basically, the oncologist I saw there concurred with my local oncologist. He recommends weekly Navelbine and Herceptin. The only difference is that my local onc wants to switch me to a new hormonal treatment, and the MD Anderson doctor says no hormonal therapy--that it can interfere with the chemo.

A few things hit me right off the bat. One, my local oncologist Dr. Chapman is on the ball, if
a breast cancer oncologist at MD Anderson recommends the same therapy. Two, I was disappointed that there wasn't anything special offered to me. I was expecting some magic aggressive potion to kick this recurrence. And, three,
now I have to decide whether to do the hormonal therapy or not.

My gut instinct is that since my tumor was so strongly estrogen positive, that I should do the hormonal treatment.

Now, since I have a 2nd grader and a preschooler, I have to figure out the logistics of weekly chemo.

I think I still want to go to Duke for their breast clinic. May try to do that next week. I'm only two hours away.

Thanks for all your notes of support, I was overwhelmed when I got back home.

You guys are the best!

Take care,
Debbie

January 2, 2003

My tumor marker test is elevated. The high end of normal is 39, and my reading was at 59. We are off to Houston in a couple of days.

Debbie

December 30, 2002

I decided to call M.D. Anderson Cancer Center in Houston for a second opinion. When I originally had surgery, I had my pathology slides sent to MD Anderson for second opinion and I'm glad I did. Now, it's time for a new gameplan.

They are able to get me in pretty quickly. Brant & I will go to Houston on January 6 for an appointment on January 7.

Of course, we don't have the kind of money you need in order to be able to be treated halfway across the country. Fortunately, my aunt donated her frequent flyer miles so that Brant & I could fly to Houston. Then, because Brant travels so much, we were able to get a free hotel room. So we'll just have to pay the doctor's fees and for food.

They have requested that I have blood work done (called tumor markers) that shows the level of cancer activity in your blood. Also, a bone scan will be done. I have to gather all of my CTs, X-rays, etc. and carry them with me. This is all happening so fast!

Debbie

December 26, 2002

I got the results of my PET scan today, and the cancer has grown. We are in shock. I'll write more later.

Debbie

December 12, 2002

When The Doctor Calls You Himself, It’s Never Good News

Got a call from my oncologist today. He and the radiologist are "concerned". The CT I had on Monday showed the 5-6mm spot on my lower right lung and the 1cm enlarged pretracheal node have gotten bigger. I was too numb to ask how much bigger. They are still small, but this warrants a PET scan.

Some background: I get CTs done every three months--have done this for 2 1/2 years. Scan done Aug 5 showed small spot on lung & enlarged node. Got another scan on Sept. 16 due to some unrelated scar tissue. Those two spots still there. Onc says very small, lets wait three months. Well, I waited my three months, and this is what I get!

My family is in shock, too. On the outside, I'm saying that I stay positive. On the inside I'm thinking about how long I've got. Complete panic. Took an Ativan, that helped.

My husband is out of town. When I told him he said "will you finally do something about your diet? You need to lose weight and eliminate sugar from your diet". Just what I wanted to hear, right? He called back and apologized, but that starts me thinking, "Gee, if I didn't eat any refined sugar, maybe the cancer wouldn't have returned." Not that it's officially returned, yet.

But, I get the PET scan on Christmas eve. What else could it be but cancer? I had IBC for Pete's sake! Of course this is cancer, too!

So now I'm in survival mode. Going to exercise tomorrow and eat only organic food. I'm already taking tons of supplements.

What can I expect from the PET? How soon do you get the results? Assuming it has spread, what do I do next? Look for clinical trials? Play "shoot in the dark" with a chemo cocktail?

I've been on Femara for 2 years, and Herceptin for 2 1/2 years. Will they automatically take me off of these two? What if they're working, and if I hadn't been taking them, cancer would be all over my body? Too many questions.

Debbie

Friday, December 6, 2002

Today, December 6, is my three year anniversary from date of diagnosis. I'll always remember the date, because after my husband and I got the bad news, we went to my parents' house to break it to them, and ironically the local TV station was playing in the background. They were doing their "Buddy Check 6" where you're supposed to call a friend to do a breast self exam on the 6th of each month.

Anyway, when you get to this point, it's just another day to everyone. It's not that to me. Most people feel that by now, you get on with your life. But it's kind of hard when you take a little yellow cancer pill every morning, and you get a Herceptin IV every three weeks for life. I started chemo a week after diagnosis, and have been going ever since.

We had an ice storm on Wednesday here in Charlotte--trees and power lines down all over town. I went to my onc doc's office for my Herceptin treatment, but they were closed. No electricity or telephone. I'm glad I wasn't there for urgent chemo or something. Because there was nothing. Quite a surprise.

Anyway, I'm happy that I'm still alive three years later. My kids are now 4 & 7. The sudden weaning to start chemo is a distant memory and all is well until my 3 month CT scan on Monday which should show if the spot on my lung, liver and enlarged lymph node are still there, growing, or shrinking.

Thanks for this wonderful outlet, and thanks for letting me share.

Take care,
Debbie

Saturday, October 5, 2002

Hi everyone,

Did you know that the Department of Defense has a breast cancer research
program?

10 years ago, the National Breast Cancer Coalition and others were looking
for ways to increase funding for breast cancer research. They were told
there was no room in the NIH (National Institutes of Health) budget. So, a
very enterprising congressman noticed that there was money in the defense
dept. budget and got Congress to vote to keep the money within the DOD
budget, but earmark it for breast cancer research.

In 10 years, the Dept. of the Army (which administers the program) has
created (along with advocates and scientists) a peer-reviewed research
program that stands as a model for other similar programs.

Every year, we lobby Congress for money for our DOD program. We are usually
successful in getting between $150 - $175 million per year. The DOD uses
this money to give out as grants for scientists to research breast cancer.
It has been a very successful program and includes advocates in every level
of decision making.

Every three years, the scientists are required to go to a meeting call the Era
of Hope and present their work. I was lucky enough to be able to attend
this meeting last week.

Imagine--1400 scientists and researchers all working on a cure for breast
cancer! This group also included about 120 "consumer advocates" as we are
called. I admit, it was a daunting task to try and understand the
scientists' presentations as some of the terms and concepts they used were
very technical. But, I think I held my own.

Of course, I passed out IBC brochures and business cards to anyone
(scientists included) who talked to me.

Take care,
Debbie

September 1, 2002

Hi everyone,

I had some surgery on Friday for what the plastic surgeon calls "scar revision". This is phase three of my reconstruction.

Within 24 hours before the surgery, I pointed out a lumpy place between my two "breasts". He seemed concerned and told me I should see my oncologist and have it scanned. Red flag! Whoa! Wait a minute here!

I drove right over to my oncologist's office. From my last CT on Aug. 5, I have a 5 mm lung spot and an enlarged lymph node, and now the plastic surgeon is concerned about another lump? I was expecting him to say that it's just scar tissue, but that's not what he said.

My oncologist said to wait a month and re-scan. I told him to jump in a lake "on the inside!". On the outside, I said "Okay!". He agreed to a biopsy and said he would contact my regular surgeon for me. He also told me to cancel my surgery for the next day.

Plastic doctor wasn't too happy about that. He spoke to another oncologist at Dr. Chapman's office since Dr. Chapman left for the day right after seeing me, and he said he'd (plastic surgeon) do a needle biopsy.

Long story short, results came back negative! Whoo!

Had to get through the requisite 24 hours of vomiting. I scoff at the nausea meds they give you in the hospital--it does nothing for me. It's better today.

Anyway, surgery's over, biopsy's negative, and I have to wait till the end of Sept. to have another CT scan on my lung and lymph node.

Take care,
Debbie

August 19, 2002

You know, it really makes me mad that I can't get life insurance. Unfortunately, I was only 34 when diagnosed with IBC and was still thinking I was infallible (if you know what I mean). My husband had a measly $3000 policy on me with his employer. Now, he's switched employers and can't get any at all.

I am on Social Security disability, luckily, and my children get money on my behalf. But, now that I'm facing possible spread of the cancer, I want to have my ducks in a row. We don't have enough to cover a funeral and I was trying to get some, any, amount of life insurance.

One of the things I questioned is that they want you to be something like 3 years out from treatment. I put that I was 2 years out since I finished radiation in 8/00. BUT, I'm still on Herceptin and an oral drug. That means I'm technically still in treatment, and a financial risk for them.

Debbie

August 7, 2002

You know the game tag? Well, I guess I'm it. Got a call today from my onc doc about my routine 3 month CT. There were two areas of concern:

1) a borderline enlarged lymph node in the mediastinum (between the lungs)
2) 5mm density in the lower right lung (on the side where the cancer was

Neither of these have been there before. I've had several 1cm liver lesions that were too small to biopsy. They've never grown larger, sometimes they don't show on the CT, sometimes they do.

If these two new things have always been there, wouldn't they have shown up before now? I've been having 3 month CT scans since April 2000. If the lung one was on the unaffected side, I'd say no sweat. But, my cancer was along my right chest wall, the right lung is the one showing a 5 mm area, my liver is on the right side, and since I had 12 positive nodes at time of MRM, I would think that having an enlarged on in the middle of my chest now could be cancer.

The onc doc says they are too small to biopsy. We are going to wait 3 more months and rescan.

How in the world am I supposed to sit here for 3 months and wait to see if it's cancer? He says they are too small for a PET scan as well.

I'm already getting the "think positive" and "it's nothing" stuff from folks. I was so calm on the phone to the doctor and on the inside I'm screaming with fear.

Is there anything else I should do? Start taking snake oil? Throw my diet out the window? How do you sit back for 3 months.

Take care,
Debbie

July 22, 2002

Hi everyone,

I just flew back from Chicago last night (and boy are my arms tired ;) )
after attending the National Breast Cancer Coalition's Project LEAD. There
are no words to describe the experience, but I'll try: thrilling,
educational, an experience of a lifetime, enlightening, thoughtful,
provocative, and well worth it.

I made connections with the other participants that I otherwise never would
have. I met women (and a man) who are already strong breast cancer
advocates.

One lady, from California, was the head of the CA breast cancer research
program that allocates grant money for research. They are funded by getting
2 cents from every pack of cigarettes sold in CA. That was 17 million
dollars last year alone!

The one man in our group was from the Philippines. His wife had died of BC
and he has dedicated his life to advocacy (sound familiar?)

I learned microbiology, the structure of cancer at a cellular and genetic
levels, epidemiology, and how to apply this scientific training to my
advocacy work.

In addition, I educated them about IBC. Handed out many business cards and
brochures. I let them know about IBC at every opportunity. In fact, I may
have been slightly obnoxious, but I hope not.

Take care,

Debbie

May 8, 2002

I had a normal CT and MUGA scan today. Hurray!

Found out that my insurance doesn't want to pay for my hospitalization last year when I had cellulitis in my arm. The doctor sent me over from her office at the hospital to admissions, and I didn't think to call my insurance company to get THEIR permission to be admitted to the hospital. Now I have a fat bill to pay. On top of all the other medical bills we pay. Sigh.

Debbie

March 27, 2002

I went to a meeting last week of the Making Strides Against Breast Cancer committee chairs. They were looking for volunteers for this year's race. I felt my hand go up and before I could think about it, I volunteered to be
the volunteer chair for the whole entire race this year!

Making Strides is like Race for the Cure, but it is put on by the American Cancer Society. Anyway, there are activites all year long including a golf outing
fundraiser, a survivor's luncheon, a press dinner, and month-long breast cancer awareness events in October at a local mall culminating in a 5K race. Last year was the 2nd year of the event, and a couple of thousand participants managed to raise $150,000.

Isnt' that great?

Take care,
Debbie

February 17, 2002

I just completed my second stage reconstruction on Monday and haven't felt well enough to write until now. (Basically, I've had to get over the anesthesia, and other meds with which I generally don't do well).

Surgeons don't like to do immediate reconstruction on
IBC patients for many reasons, including high rate of recurrence and our treatment generally includes radiation. I was told I needed to wait until a year after radiation. Since I am also on Herceptin, they don't count that
as being detrimental to getting reconstruction.

I had the latissimus flap recon on the irradiated/cancer side and simple tissue expander on the other. That was at the end of October. The surgery went surprisingly well, but I wasn't prepared for the discomfort in my back. I also ended up with an over 13 inch long scar on my back. The surgeon needed that much tissue to bring to the front because I had very bad scarring and tissue damage from radiation.

The latissimus gave me a shape that I couldn't see possible any other way. The surgeon was concerned that it heal together with the radiated skin, and it healed beautifully. The side with just the expander was a breeze because it was numb anyway from the surgery last year.

The latissimus flap has been almost 4 months now. I've had no problems with range of motion, I can get in and out of a chair, lift a 30 lb. toddler, and do almost anything else that needs to be done. (I do tell my husband I
can't sweep or vacuum and he obliges). :)

We never know how much time we have left. That includes those without cancer who could step in front of a truck tomorrow. So, I've learned to be thankful for every day.

Take care,
Debbie

February 10, 2002

Dear family and friends,

A quick update. I had an MRI of my brain on Monday because there was some concern of spread of the cancer to my brain, but all was clear. My CT scan showed that I am stable. So, I'm losing my memory due to stress and age, I guess. Ha Ha!! I continue to get scans every three months and they've all been clear so far. I can't believe it's been over two years now, and I'm doing great.

Anyway, thanks for your continued prayers and words of support. I'll take your good wishes into the operating room with me tomorrow for my surgery.

Love,
Debbie

February 1, 2002

Monday, I'm having an MRI of my brain to rule out mets. I"ve had tingling in my fingers in my lymphedema arm, and I've become very forgetful (like my address, when to put on the turn signal in the car, etc.). I'm not expecting it to show anything, but I want to be sure. It's probably the lymphadema (I haven't wrapped in a while or worn my sleeve) and stress from so much going on in my life. Then, I have my CT scan of my chest. Wednesday, I have my MUGA scan.

I'm scheduled for my second surgery on Feb 11. Dr. Watterson will put in the permanent implant on the unaffected side, a small implant on the affected side and "raise" the scar. I still can't believe they do this on an outpatient basis.

After my last fill up of saline, he took me out into the hall while he looked at a chart to decide which implants to use. It was amazing--hundreds of different options based on projection, anatomical shape, etc. He finally decided on a particular size for me and sent me off to see the scheduler. Well, of course the scheduler tells me that the silicone implants he wants to use are only done at CMC in a study and my insurance only goes to Presby. I just had to laugh! He wrote a letter to the insurance company telling them why I should have my surgery at CMC and they approved it! I can't believe that.

Anyway, I'm going in at 5:30 on Feb. 11 and they plan to send me home that same day. Amazing.

I'm planning to go back to DC for the NBCC's advocacy conference. It is April 27-30 this year.

Take care,
Debbie

January 13, 2002

Hi y'all,

As you may or may not know, I've been a La Leche League Leader (volunteer breastfeeding counselor) for five years and am my state's coordinator of leader accreditation. I am in a unique position to target the breastfeeding
community with information about breast cancer.

Last Thursday night, I was invited to speak at our county's Breastfeeding Peer Counselor Program (part of the WIC--Women, Infants and Children Program). These are the ladies who teach breastfeeding and counsel moms who
are receiving help from WIC.

Anyway, they asked me to speak about my breast cancer experience and about sudden weaning. I told my story and as usual, I had a rapt audience. Of course no one's ever heard of IBC, but when they leave I make sure they do
and have read a brochure. They were so impressed that they asked me to leave brochures that they could distribute throughout the WIC program!

My thinking is that if these counselors are dealing with moms who may have breast infections already, they should have in the back of their minds the possibility of IBC if an "infection" doesn't seem to clear up on its own.
(That's how my IBC was diagnosed).

We're making ripples in the water.......

Debbie

January 8, 2002

You Look Great

Even I didn't know much about how cancer affects you when I was first diagnosed.

As with most of us with IBC, I was given the diagnosis and started chemo the next week. This was a week before Christmas. Everyone gave me lovely pajamas for Christmas--as I had requested.

For some reason, I figured that during chemo, I'd be sitting in my bed most of the day wearing these lovely pajamas and watching the world go by my window.

Thankfully, that was only true for a few days after each treatment. I could usually be found standing in front of the open door of the refrigerator looking hungrily at food I knew I just couldn't eat....

The actual experience of cancer treatment changes us.

Debbie

December 6, 2001

Two years ago, on Monday, December 6, 1999, a diagnostic mammogram confirmed what a needle biopsy had found the previous Friday. Inflammatory breast cancer, IBC.
Stunned beyond belief, we muddled our way through the chaos of the following days. Yes, I was only 34. Yes, I found a lump while I was nursing my baby. No, there's no family history of breast cancer. I submitted to all sorts of tests, weaned the baby and began chemotherapy the next week. One day, I'm decorating for Christmas and the next I'm shopping for wigs.

Inflammatory breast cancer is a wicked, insidious strain of cancer that is little understood, almost unheard of both inside and outside of the medical community.

Recently, a few people said to me, "Aren't you glad this is behind you now?"Inside, I was angry and hurt. Then I realized that they couldn't possibly understand that this is never over. IBC likes to come back. That ball of
terror in the pit of my stomach every three months as I wait for the results of my latest CT scan. You have to hit this with all the big guns. I continue to get Herceptin by IV every three weeks. I take an anti-cancer pill daily that blocks estrogen from forming in my body. I take about 20 pills a day--a combination of prescriptions, vitamins and carefully researched supplements.

And now it's two years later--a milestone. Inflammatory breast cancer is over 50% fatal within five years, and almost always fatal within ten years. That is why I've become an IBC research advocate. I want to help find a
cause for this disease so that my daughter and your daughters, sisters, mothers, wives don't have to go through this. This year, I'm making donations to the IBC Research Foundation http://www.ibcresearch.org/donations/ in honor of loved ones for Christmas presents. As long as I am doing well, I must try and make a difference.

So, to celebrate my anniversary, I went to the grocery store and bought myself a cake. I had them write "Congratulations Debbie!" on it and I took it to the Buddy Kemp Caring House. There, I threw a party for myself at my breast cancer support group meeting.

Two years out from diagnosis, I am healthy. My children are growing. My family, especially my husband and my mother, have helped me so much. I amso lucky. God has blessed me tremendously. I've met some incredibly
courageous people and said goodbye to others. I continue to draw on the support of my family, church, friends, email buddies and you. I thank God for each new day.

I hope you have a wonderful holiday and thanks so much for your ongoing support.

Love,
Debbie

Friday, November 16, 2001

I had a repeat CT and MUGA today. The MUGA report with a new machine showed my LV % was up to 73%!!! Can you believe it? It’s either the new machine, or the CoQ10, or both. The CT was fine, too.

Debbie

Thursday, November 8, 2001

I had my surgery two weeks ago. It went off without a hitch.

We went into the hospital around 9:30 and they prepped me for surgery. I remember joking with the staff in the operating room before they put the mask over my face, then I woke up in a hospital room. Much different than laying on a gurney for six hours waiting on a room after my mastectomy. Presbyterian seemed to be much better. The staff was very nice, the nurses came when I called and even the lab people were pleasant.

I was quite nauseous the first night from the anesthesia. Wednesday, I switched to other pain relievers and did much better. The doctor said all went very well.

I was able to go home Friday morning. I was sore, and I didn’t anticipate the pain in my back. I had three drains on my right side. It was very hard to sleep, and still is somewhat difficult to sleep.

Brant says when I came out of the anesthesia, I was making jokes. It was a happy surgery, and I feel like my immune system was much stronger than last year. There was only paper tape over the stitches. You could look down and see everything. Actually, it didn’t look as bad as I thought it would. I was figuring on a Frankenstein look, but it wasn’t that bad.

I went for a check up a week later, and was able to have my drains removed. Yea! They put new paper tapes on my stitches and sent me home. I was told I can’t drive for four weeks. Yikes! Neighbors brought meals, I got flowers and a plant. People are so great.

Yesterday, I went for a 2 week checkup. They removed the tapes. The doctor said I’m doing remarkably well. They decided to inflate the expander side. They put in 130ccs of saline when I finally said stop. It was an uncomfortable feeling, and I could feel the needle going in. I still feel like I have a small baseball under my arm, but I suppose I’ll get used to it!

October 18, 2001

This is just a quick note to say hi and to ask you to say a prayer for me. I am about to undergo reconstructive surgery next Tuesday, October 23 (the date of my 8th wedding anniversary!)

I am having to have skin and muscle moved from my back to the front because I had so much damage from radiation (which is good--we wanted to fry my skin because inflammatory breast cancer is in the skin, too). So, it will be more involved than a simple implant reconstruction. My surgery is expected to last six hours. I should be in the hospital from 2 - 5 days. Then, I should heal for about 3 weeks and move on to the next phase of the reconstruction. There are 4 steps involved. There will be another surgery, but I don't anticipate that until sometime in January.

I hope you and yours are doing well. It's so beautiful this time of year. Makes me so thankful to be alive!

God bless,
Debbie

September 19, 2001

I can't believe what happened eight days ago. That terrorists could hijack four planes and kill thousands. Please pray for the families of those affected.

On another note, I've written a letter to family and friends that I wanted to send out in October. I intended
to print it out on pink paper and include an IBC brochure with every letter. I realize this would cost me some money, but it's worth it. I've been involved with Race for the Cure for 5 years now and I've become increasingly
frustrated. Only 65 cents out of every dollar raised go toward their programs. And very little of that actually goes to research. They have such a high overhead.

In light of 9/11, I decided not to send out the letter at this time, but still wanted to share it in my journal.

*******************************
October 1, 2001

Dear Family and Friends,

In honor of Breast Cancer Awareness Month, I thought it fitting that I should write an update letter to you.

As you probably know, I was diagnosed with inflammatory breast cancer in December 1999. I found a lump while nursing my baby. I was lucky enough to have a sharp OB/GYN who sent me for a biopsy confirming the diagnosis. The
next week, I started three months of chemotherapy followed by a bilateral mastectomy. My tumor was quite large and had spread to about half of the lymph nodes removed under my arm. Since the cancer was still there, I had
three more months of chemotherapy followed by six weeks of daily radiation.

During this time, I found out that I overexpress a certain gene implicated
in my breast cancer, so I began weekly IV infusions of a new therapy called
Herceptin. I had a complete hysterectomy in September 2000 as a
precautionary measure since my cancer was hormone-related. Of course, you
know I developed life-threatening complications following that surgery, but
came through it okay. Then, I was also placed on an oral anti-cancer drug
similar to tamoxifen that stops my body from manufacturing estrogen.

I've been getting CT scans and nuclear medicine scans of my heart every
three months. Sometimes the CT scans show lesions on my liver that are too
small to biopsy and sometimes they don't show them. We don't know if the
liver lesions are cancer that has spread or if they are something else, so I
continue to have quarterly scans to watch them. My heart is monitored
carefully because it was damaged by the chemotherapy. I also continue to
see my surgeon and oncologist on a regular basis.

Any time there is surgery to remove lymph nodes there is a risk of
developing lymphedema which is a swelling of an affected limb (in my case,
my right arm) because the lymph in that part of my body no longer has
somewhere to go. That must be carefully guarded against infection. I
developed cellulitis (an infection in that arm) earlier this year and spent
my 36th birthday in the hospital getting IV antibiotics.

Currently, my scans are good. My oncologist is moving me to IV infusions
every three weeks at three times the dose so that I don't have to go in
every week. In addition to chemotherapy, I take the anti-cancer pill, a
medicine to prevent cancer from going into my bones, and another to cut off
blood supply to any tumors that may try to develop. I also take a few other
medications for my heart and lots of herbs to boost my immune system.

If it can be scheduled soon, I will be having bilateral reconstructive
surgery (which means both sides). If not, it will be after the first of the
year. I don't want to be hobbling around during the holidays.

My strong faith in God and lots of prayer have kept me in a positive frame
of mind. I have a lot to live for. Not the least of which is my wonderful
husband Brant, and two terrific children, Haley and Christopher, who just
turned 6 & 3. We also moved into a brand new house over the summer and have
been busy with that.

I love to help others, so I talk to a lot of the newly diagnosed breast
cancer patients getting ready for their first chemo. When I can, I also
help out with a weekly breast cancer support group. I am dedicated to
educating women about breast cancer so I've spoken to several women's
groups, and I'm a chairperson for a local breast cancer event coming up this
month. I'm an advocate with the National Breast Cancer Coalition and I've
attended three breast cancer conferences around the country this year. I've
just received a statewide outstanding alumna award from my college
fraternity. Then, of course, there's church volunteering, helping out in the
kids' classrooms, and I'm writing a book about inflammatory breast cancer.
Whew!

People often ask me why I do so much for so many people. I usually answer
them by saying, "You always hear people say they should do something about
[fill in the blank]. Well, who is they? I've decided it has to be me." I'
m fighting for a cure for breast cancer so my daughter will not have to go
through what I've endured. I wish it was over and I could get back to a
normal life, but my weekly chemotherapy and complications from surgery
prevent me from doing that. I am making fantabulous lemonade from the
lemons that life has handed me!

I am also writing you today to educate you a little bit about IBC
(inflammatory breast cancer).

So what is IBC? IBC is a serious, often fatal cancer. However, recent
studies show about 40% survival five years after diagnosis. It accounts for
only 1% - 4% of all diagnosed cases of breast cancer. Please read the
enclosed brochure which describes the symptoms of IBC. See your doctor if
you have any of the symptoms; if the symptoms are caused by IBC, the sooner
a diagnosis is made and treatment begins, the better the survival chance.

All of us need to know about IBC. Men as well as women have been diagnosed.
Partners need to be aware of the symptoms since they often see initial
symptoms before the patient. IBC can occur in young women, including during
pregnancy, and before menopause. IBC is often thought to be mastitis (an
infection), or a dermatological problem appearing as a rash.

One of the most unfortunate facts about IBC is that many professionals are
not familiar with the symptoms of inflammatory breast cancer; and therefore
precious time is consumed prescribing antibiotics to treat symptoms. (In my
case, antibiotics were only prescribed for seven days before a referral to a
surgeon was made). Physician assistants, nurses and mammography technicians
need to know too. Dermatologists need to know since IBC skin symptoms may
result in a referral to their office.

IBC is a very aggressive, often misdiagnosed form of cancer. IBC symptoms
will often be treated with antibiotics as an infection. A mammogram,
ultrasound and biopsy can confirm diagnosis. It is a very aggressive and
deadly cancer and needs to be identified and treated without haste!

Did I catch it in time? I don't know. Even though statistics show about
80% of women with IBC will have a recurrence of their cancer within two
years, and only four out of ten will be alive five years after diagnosis, I
KNOW that I have a good chance of being in that 40% and I have no active
cancer right now. I've always been a glass is half full kind of person,
anyway.

There has been a lack of research dollars to fund this important disease of
women because breast cancer advocates and the scientific community have
focused on funding research where there is a high degree of survivorship.
Research of advanced and aggressive breast cancer, especially including
inflammatory breast cancer must become a priority to impact the number of
deaths reported as caused by breast cancer.

Now, here comes the hard part. Would you consider writing a check to help
us research and ultimately find a cure for IBC? The Inflammatory Breast
Cancer Research Foundation is a qualified U.S. IRS 501(c)(3) non-profit
corporation dedicated to the support of research and public awareness.
Proudly, 100% of all donations go directly to the mission of the Foundation.
The staff is composed of volunteers, brought to this cause because
inflammatory breast cancer in some way has touched their lives. I know. I
met them in Washington, DC this past May. They came from Chicago, Seattle,
Anchorage, Philadelphia and New Jersey. We all have the same goal.
Eradicate this disease so that our children won't have to worry about it.

Make your tax-deductible checks payable to IBC Research Foundation. If you'
d like, send your check to me. I will send them all in together. I would
like to honor the memory of some very special women I've met via the
Internet IBC Support Group who've died of IBC this year. Or mail them to:
Shelda Duff, IBC Research Foundation, P.O. Box 90117, Anchorage, AK 99509.
I'll sign off with my new address and email address.
With loving fingertips, we ripple the waters and soon will make a wave.

God bless,



Debbie McKinney

September 7, 2001

Hi, there. I finally went to see a plastic surgeon today. He surprised me by saying he would recommend a latissimus flap on the IBC side with implant, and regular ol' implant on the unaffected side. This is where they take skin and muscle from your back and bring it to the front. We decided to go ahead with the surgery.

Tuesday, September 04, 2001

I saw Dr. Chapman in the hallway last week while I was going for chemo. He told me that he’d recently been at a conference where they decided that Herceptin given every 3 weeks at 3 times the dose was just as effective as giving it weekly. Starting next week, he’s going to dose me every three weeks. That will free up two out of three Fridays now. Yay! I believe I’m up to week 74 of Herceptin.

I’m going to see Dr. Watterson on Friday, September 7. He’s a plastic surgeon recommended by Dr. Flippo and others. I want to see what my options are. I’m kind of scared. Not sure if it’s worth it or not.

Today, I got an email from Wendy Goodman. She’s the first lady with IBC that I met here in Charlotte. She’s another young mom and she just finished treatment a couple of months ago. Well, now she’s got lung mets. I’ve been pretty upset all night thinking about it. I’m very sad for her, and it also brings home to me that I will never be out of the woods. So far so good. I want to keep up my positive attitude.

Debbie

August 27, 2001

Hello everyone,

On August 2, I had a routine CT scan and MUGA (heart) scan. Both were uneventful, thank God!

I'm getting settled into the new house. My thoughts are filled with paint colors and decorating ideas. My daughter's off to 1st grade, and my son starts preschool next week.

It's getting close to "Breast Cancer Season". I've already started by volunteering at the local Race for the Cure at the survivor's tent the day of the race handing out pink hats, t-shirts and goody bags. I always have IBC brochures with me. There are sponsor tables and since I know many in the breast cancer community, some of the local hospitals and others will let me put the IBC brochures out on their tables. I've also been invited to the survivor's luncheon. Another great place to hand out brochures.

Then, there's the Making Strides Against Breast Cancer, sponsored by the American Cancer Society. I've volunteered as the brochure chairman for the Charlotte area. Surely I can sneak some IBC brochures out there, too!!

A friend on my IBC email list said she sent out a letter and brochure to all her family and friends in October asking for contributions for breast cancer research. I feel that would be a wonderful way to raise money for the ibcRF.

On a personal note, I'm going to a plastic surgeon on Sept. 7 for a consult. I've never been to a plastic surgeon and since it's been 1 1/2 yrs since diagnosis, I think I'm ready for surgery.

Thanks for all of your inspiring cards & emails. I may not write all the time, but I read each and every one and thank God for you.

Take care,
Debbie

June 24, 2001

Hi y'all,

Just wanted to let you all know that you never know when there will be an opportunity to educate others about IBC.

For those of you that don't know, I am a La Leche League Leader/breastfeeding counselor/educator/trainer/what have you. To keep up my education, I just attended a 3 day breastfeeding/lactation consultant conference that ended today. You'd be proud of me. The audience was made up of health care professionals--mostly nurses and lactation consultants. I used my ibcRF tote bag to draw attention to myself and handed out brochures to tell these professionals that if they are treating a case of mastitis that doesn't clear up to consider IBC as a cause. Passed out brochures and took several questions.

Sometimes, I feel like I'm still in sorority rush mode. I try to sit with people I don't know. That way, I can initiate a conversation (albeit subtly) about breast cancer and IBC. For these women, I said "Did you know that you can have mastitis symptoms and breast cancer without a lump?" That certainly got their attention.

Hopefully the women I was able to talk to took our brochures back to keep and use in their practice of diagnosing and treating breastfeeding problems.

Take care,
Debbie

Tuesday, June 5, 2001

Today, I got a copy of my CT report. It showed that everything is fine, but, it also showed a small liver lesion. This is driving me crazy! What are these mysterious liver lesions? I’m going to ask Dr. Chapman at my next appointment if we can do an ultrasound or something else to find out once and for all what these liver lesions are.

I also think I’m ready to talk to a plastic surgeon about reconstruction. I know I can’t do it until later this year. Ideally I would like to wait until Mom retires later this year so that she can help out while I recover. I just want to talk to the plastic surgeon, see what he thinks about my reconstruction and if I need to do anything to prepare.

Debbie

Monday, May 28, 2001

Today, I had a CT scan and a MUGA scan at Presbyterian Matthews. The MUGA scan preliminarily showed a LV function of 50.9% which means I get to continue the Herceptin.

Debbie

Friday, May 4, 2001

I flew to Washington DC for the National Breast Cancer Coalition’s Annual Advocacy Training. The conference began on Saturday. There was a plethora of plenary and workshop sessions to attend over a three day period pertaining to breast cancer research, advocacy and related topics. Some of the topics included Advocacy in your State Government, Media as a Tool for Advocacy, Medical Privacy,
Breast Cancer and the Environment, and much more.

The NBCC carefully chooses legislation to support by lobbying various members of Congress to increase funding for breast cancer research. The four areas chosen this year are:
1) To continue level funding of $175 million for the Department of Defense peer reviewed breast cancer research program.
2) Passage of the Breast Cancer and Environmental Research Act-- they are looking for $30 million for each of the next five years over and above what has already been budgeted to study any links between br ca and the environment
3) Passage of the Genetic Nondiscrimination in Health Insurance and Employment Act--which would prohibit health insurers and employers from discriminating against individuals based on genetic information.
4) Passage of the Bipartisan Patient Protection Act--otherwise known as the Patient's Bill of Rights which would include the right to sue.

Another delegate from North Carolina and I visited the legislative aides from five U.S. Representatives' offices and one U.S. Senator's office. I feel we were mostly successful and may be more so with follow up. I was amazed at one aide from Congressman Richard Burr's office who said "We don't like you people. We don't like your tactics and will not vote for any legislation that you are advocating here today." We learn from the bad as well as the good experiences. It makes us stronger people!

With regard to IBC, I was amazed at the networking opportunities afforded to us by the NBCC conference. I tried as often as possible to sit with different people so that I could give them my cards and brochures on IBC. There was a great deal of interest by the other advocates in attendance for our literature. Many, many of these women (most were breast cancer survivors) had never even heard of IBC!!! Those of us affiliated with the Inflammatory Breast Cancer Research Foundation as volunteers made many contacts and met a few others with IBC at the conference. As I explained to some in attendance, we make ripples in the water by passing out a brochure here and there. Those women and men who received our literature will hopefully take it back to their communities and share with their health care providers and others to increase the awareness of IBC.

As we increase the awareness of IBC, we move to another level in the breast cancer research community. Perhaps more researchers would be willing to study the cause of IBC if they keep hearing about it. At the conference, there were IBC survivors from New York, New Jersey,
Pennsylvania, North Carolina, Indiana, Texas, South Dakota and Alaska. I may be missing someone, but you get the idea that we came from all over. It was great to make connections with other women with IBC who didn't know about the ibcRF and let them know we are here.

April 28, 2001

I wanted to give you a brief update. I just returned home from a lovely three day vacation at a vacation paradise known as Chez Carolinas Medical Center (that's the local hospital for those who don't know). As a recipient of this lovely vacation, I was given full room and board, around the clock blood pressure and temperature readings, a lovely gown that ties in the back and all the green beans and watered down tea I could want.

How do you get to go to such a wonderland, you ask? Well, it all started with a hangnail. Yep, a hangnail. I've been taught that in my right arm which has lymphedema or swelling of the lymph fluid in my arm, I must be careful not to be cut or pricked anywhere on that arm. I took it with a grain of salt. You can be careful, but you have to live your life, too. Well, all it took was one little hangnail that led to an opening for a nasty staph bacteria to enter and cause major problems with my arm. In little over 24 hours, I went from a couple of raised red bumps on that arm that grew to the entire arm being red, swollen, hot to the touch and achy. I also developed a fever and flu-like symptoms.

I got in to see my doctor right away, and she decided to admit me to the hospital on the spot. This was on Wednesday. On Thursday, I celebrated my 36th birthday in the hospital. It really wasn't so bad. I had lots of visitors and phone calls. I got flowers, cards and lots of good wishes. I'm STILL ALIVE!!!!

Now, it is Saturday and I'm back home. After four IV antibiotics treatments, the doctor feels I'm stable enough to have oral antibiotics and recoup at home. The kids really missed me, and I missed them (and Brant too!). My family was great, as usual, helping out with everything.

I learned I have to treat that arm with kid gloves. If you see me, I'll probably be slathering on lotion to prevent another hangnail.

On a brighter note, I'm glad it happened this weekend. Next weekend, I head to Washington DC for the conference.

Thanks for the continued prayers and good wishes. Hope you continue to have a warm, lovely spring.

Take care,

Debbie

Thursday, April 26, 2001

My 36th birthday was spent in the hospital. It wasn’t so bad, though. Both kids called and sang Happy Birthday. Brant brought coffee and danishes. My friend Nora brought a hot fudge sundae after lunchtime. Brant brought me an oil painting he had bought as a surprise. I had lots of phone calls and flowers.

I wasn’t hooked up to anything except the antibiotics infusion, then they would unhook it again.

I ended up spending three days in the hospital. Was released on Saturday, April 28. Nice little addition to my journal.

Wednesday, April 25, 2001

My arm is covered in bumps, they are spreading and forming red patches on my arm. It reminds me of when I had an allergic reaction to Keflex, but this is confined to just the lymphedema arm. Not the hand, and it seems to stop where my compression sleeve would stop. My arm hurts, is hot and swollen and I have a low-grade fever. I decided to go to Buddy Kemp Caring House to keep my mind off the arm.

I picked up Haley and dropped the kids off at my dad’s house, then went to see Dr. Stewart. By this time, I was really feeling bad. Flu-like symptoms. My whole arm red, hot, swollen and aching.

Dr. Stewart came in, took one look and told me she wanted to admit me to CMC for IV antibiotics. She said it was cellulitis, which is what I’d suspected. It is an infection in a lymphedema arm caused by staph bacteria. Can be quite serious. All this from a hangnail!! (That’s the only place I could think of for an entry point for the bacteria). Mom came down and took me over to the hospital. I checked in at 4pm. Told them I wanted them to use my port for the IV, and a nurse didn’t come to start it until 11pm! So, they finally got the antibiotics going. It was a 1 hour infusion, then they removed the tubes so I could move around.

Tuesday, April 24, 2001

I woke up with about 10 – 15 of those bumps. So I decided to call a doctor about it. But which doctor? I decided on Dr. Stewart who was my lymphedema doctor. I left a message on the nurse’s voice mail at 8:30am.

I dropped Christopher off at school and then went to meet Haley for lunch. The bumps kept growing. They didn’t itch, but I kept getting more and more of them. When I left the school, my wrist started to hurt.

Still didn’t hear from the doctor’s office, so I called back at 3:30. I left my symptoms with the person who answered the phone and they called back in 5 minutes saying Dr. Stewart wanted to see me tomorrow at 2pm.

The bumps continue to grow and my arm is aching.

Monday, April 23, 2001

I went to bed with a couple of red bumps on my lymphedema arm. I thought they may be bug bites. I didn’t wrap my arm tonight.

Debbie

Tuesday, April 17, 2001

Well, there’s 2 ½ weeks before the Advocacy Training conference in Washington, DC. I’m very much looking forward to it. Had a 3 month checkup with Dr. Flippo (my surgeon) last Friday. She says I’m doing well, and will space my appointments out to 4 months now since I’m still seeing Dr. Chapman every 3 months.

Wednesday, April 4, 2001

Wow, it’s been a while since I’ve written. Last month I had my one year anniversary of my mastectomies. I wasn’t sure how I’d feel—sad or happy. Turns out it was a bit of both, but not as big a deal as I thought it would be. I mean, I’m happy to be here NOW.

I finally got into the lymphedema clinic at Charlotte Institute of Rehab which is connected to CMC. This is like physical therapy for my arm which became very swollen (lymphedema) following surgery & radiation. I went every day, Monday through Friday, for three weeks. I was there for an hour and a half at a time, and it took over an hour round trip to get there!!!! But, the occupational therapists I worked with were so nice. I learned how to wrap my arm, how to take care of it and got a 45 minute to an hour massage every day! Lymphatic massage uses a much lighter touch than regular massage because the goal is to move lymph out of the affected limb and a heavier touch would only collapse the lymph vessels and the fluid wouldn’t go anywhere.

On April 2, I received my custom made compression garment and that is so much better than having to stay wrapped all day. I still have to wrap at night, but daytime has gotten much better.

I also celebrated my 52nd Herceptin treatment. I am now into my second year and doing fine.

I met with Dr. Chapman for my 2 month checkup on March 28. Seems I’m doing fine. Blood tests including liver, kidney, etc. came back fine. I’m scheduled for a repeat CT scan in April and a repeat MUGA in May. Then, Dr. Chapman has graduated me to 3 month checkups. So everything is looking good right now.

Brant and I signed a contract to build a house three weeks ago so that has taken up a lot of my time and energy.

Also, I applied for the NCI’s CARRA program to be a patient advocate for research, clinical trials, etc. I really feel that this would be a way for me to make a difference.

Then, last week I found out about the National Breast Cancer Coalition’s annual Advocacy Training in May in Washington, DC and I decided I would really like to go. I downloaded the conference brochure and it’s a four day conference with plenty of plenary sessions and breakout workshops to keep me interested and informed. It culminates with a Lobby Day rally and meetings with our Congressional representatives to talk about breast cancer issues. Again, I feel that this would be a way for me to make a difference.

You know, you always hear people saying “I wish they would do something about that”, but who is “they”? Well, I decided that I am “they” and I have to do something to help eradicate cancer. I’m doing this so that my daughter and all daughters won’t have to go through what I’ve been through in the past year and a half. I’m feeling really good about my involvement and plan to continue as long as I have the energy!!!

Debbie

March 28, 2001

Yippee! MUGA (heart) scan from this morning showed 51% heart function (December's showed 42%). So now I can continue Herceptin! Thanks for all of your support!

Debbie

Monday February 26, 2001

I’ve had lumps that keep appearing underneath my skin on the radiated side. Well, for the last two weeks a lumpy area has appeared in the area below my scars where the original cancer was. I’ve been worried about it, feeling it a lot and looking at it. Brant said please call the doctor. I’m like, which doctor do I call? I finally decided to call the radiation oncologist’s nurse and ask her. She told me to come in so they could look at it.

Went this morning and Dr. Plunkett looked at my area. I am concerned because this is six months post radiation and I’m still developing lumpiness. Also, the lumpiness is sore. He pressed all over me and I’m sore in a lot of areas where I’m still pink and also in the middle of my two scar areas. He said he doesn’t feel anything that makes him concerned. That and the fact that I had a clean CT scan a month ago, and he feels fine with it. Told me to take ibuprofen 3 times a day for a week and see if that helps with the “inflammation”. He said it’s just an inflammatory response to the radiation. It’s unusual for it to be going on so long afterwards, but we radiated a big area and it’s not totally unheard of especially since I’m still on chemo.

I had a big sigh of relief.

February 19, 2001

Dear Family and Friends,

Hope you're doing well. Spring is certainly beginning to show up. The daffodils are in bloom! I haven't written in a while and I thought I'd give you an update.

In December, I had a routine heart scan which showed my heart was pumping at a lower than acceptable range. Some of the chemo drugs that I've used can damage the heart. But, in any case, I was surprised by the test because I didn't feel like there was a problem. My doctor decided to have me re-tested in two months (which was last week) and I'm back in the acceptable range! I attribute this to prayer, Co-enzyme Q10, and a flawed test in December!!! At least I get to continue my weekly Herceptin (chemo).

Since my surgery last March, I get CT scans of my chest every three months. The scans have never showed any cancer, but they have shown some small liver lesions. First there were 3, then in October they could only see 1, now my January scan showed none! We don't know if they were cancer or not because they were too small to biopsy, but in any case, they're not showing up which to me means that the chemo is working! So, double yay!

I decided my next area of attack would be my diet. I have turned into a board-certified tree hugger! I've already been a vegetarian for 10 years, but recently added salmon to my diet since it is so good for you. I also aim for 6 - 9 servings of fruits and veggies every day, try to eat only whole grains, and I'm trying to avoid trans-fatty acids and processed foods. I've been reading Dr. Andrew Weil's Eating Well for Optimum Health. If that won't scare ya, I don't know what will! I've added certain vitamins and supplements that I have researched and decided would help me fight cancer recurrence. As a result, I've lost 20 pounds from my highest weight last year and have lots more energy!

Even though everything is looking great, I do have one area of worry. Both Haley's and my eardrums ruptured last week. We both had nasty ear infections. For Haley, it's the second time in 7 weeks, so we're going to see the specialist today. She still has a tube in one ear from two years ago, but gets infections in the other ear where the tube has fallen out. I went to the specialist on Friday and we decided that I will be getting tubes in my ears today! Since I can't stop being around young children who bring germs home from school, I'm going to continue to have eardrum ruptures with each ear infection. So, to keep any further hearing loss at bay, I'm getting the tubes.

Seems I've become a breast cancer awareness advocate. Last month I went to a Young Survivor's Conference in Philadelphia. Learned a lot! I've been speaking to various groups in Charlotte and in North Carolina about my story and I've been serving on US Rep Sue Myrick's breast cancer task force. You never know what direction life will take you--I guess I'm going down the advocacy path right now!

Thanks again for your continued support and prayers. I am always thankful to have you in my life.

Love,

Debbie

Saturday, February 17, 2001

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
IBC GET TOGETHER - CAROLINAS REGION
On Saturday, February 17, there will be a get-together for those affected by IBC (Inflammatory Breast Cancer). This informal gathering is open to all those dealing with IBC: patients, caregivers, loved ones and children. We will meet from 12:00 noon to 2:00pm at the Buddy Kemp Caring House in Charlotte. Feel free to bring your lunch—drinks will be provided. For more information, directions or to RSVP, please e-mail Debbie McKinney
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Based on other successful IBC get-togethers in various parts of the country, I decided it would be nice to have one here in Charlotte. I posted on our IBC email list for weeks asking if anyone was interested in having a meeting, and the answer was yes. So, I asked the kind folks at Buddy Kemp if I could use their facility. I sent out press releases to the media, and publicized it as much as I could.

On the morning of the meeting, I bought a bunch of food—snacks and such, and brought it to Buddy Kemp. I was so excited! Finally meeting more than one IBC person face to face! However, only two showed up. One was Wendy that I have spoken of before and another lady from High Point.

Needless to say, I was disappointed at the turnout. I put so much effort into trying to make this meeting successful. We did have a good time, those of us who were there. I guess I was expecting too much.

Tuesday, February 13, 2001

I read my emails and found out that Menya died. She is the woman, my age, with IBC who founded the support website and email list. I cried and cried when I read the news. This is the third IBC death I’ve read about in a week.

Monday, February 12, 2001

Of course, now I have a double ear infection. Doesn’t hurt too bad most of the time, but I can hardly hear. I made an appt. with an ear, nose, & throat doctor for Friday. I've been having colds and ear infections for almost six years now, ever since Haley was born. I've asked Dr. Chapman what I can do to boost my immune system and he says there isn't anything! There sure is a lot of "snake oil" for sale out there on the internet, but I don't want to compromise my treatment and waste my money and/or time. Do I have to shelter myself and the kids from the world so I'll stop getting sick? Very frustrating.

I had my follow up MUGA scan at CMC this morning. As a refreshing change, the CNMT, Nicole, was very pleasant and the test went smoothly. I told her my recent history with LV function so she was sure to pull my last scan up and try to give me the test just like the last one. She was very careful, even did three 10 minute pictures instead of the regular 2. After the first one, she told me my LV % was 51!!!! That means the MUGA I had in December was probably not done right. I’m in the normal range. Herceptin should be allowed to continue!!!! I haven’t spoken to Dr. Chapman yet, but I don’t see a problem. Hurray for prayers and CoQ10!!!

Sunday, February 11, 2001

I went to Arboretum Urgent Care to have a doctor look at my ear. All I wanted was a prescription, but they insisted on seeing me first. So I go in there only to find a room full of coughing, sick people. Aargh! Germs everywhere. I stood up on the opposite side of the room—as far away from the coughing as I could get. Doc looked at my ear and gave me a prescription then sent me on my way.

Saturday, February 10, 2001

My eardrum burst. Haley’s eardrum burst on Wednesday (2nd time in 7 weeks), and now mine!

Friday, February 9, 2001

I went to rehab for my first appointment—dutifully early as requested. I got there at 7:45 and waited until 8:10 before a registration woman asked to make a copy of my insurance card. I was so mad to be told to be on time or else, and they were the ones running behind. I told the therapist when she finally came for me that I didn’t appreciate it!

She took me into a room and told me about the clinic—massage, wrapping, exercises. Then, she wrapped my arm from fingertips to armpit three times with low-stretch bandages. She took them back off and told me that they used to give out these bandages, but insurance companies weren’t reimbursing them. So, she made a list of bandages, etc. that I had to go out and buy. She gave me the name of a company that sells them and I went right out to get them. $125 for ace bandages! What a rip off! I even started crying when the lady told me how much it would be. I went right home and filed an insurance claim. If they don’t pay it, I’ll try to find some of that grant money.

The therapist said I’d probably be called by Monday to be scheduled for the 3 week clinic.

Tuesday, February 6, 2001

Email to IBC group:

I had my 2 month visit with the onc last week and I'd like to get your opinions on this. My 3 month CT scan was clean. I was dx in 12/99, and have had 3 month CTs since 4/00. The 4/00 showed 3 liver lesions less than 1cm each that could not be characterized. Ok--we'll keep a watch on them. 7/00 CT showed the lesions. The 10/00 only showed 1 lesion. Where are the other two? Onc doc says they take different slices with different CTs and the others just may not have shown up. Now, my Jan 01 CT shows NO liver lesions. Onc doc says they could have just taken a different slice and not seen the lesions. My feeling is they were probably tiny mets and the weekly Herceptin has zapped them. BUT NO ONE WILL KNOW FOR SURE. Am I crazy for wanting to know what these "lesions" are/were? Should I just leave well enough alone? As far as I know we will continue the 3 month CT scans. Additionally, I've started taking Milk Thistle to enhance my liver function.

Here is my second question: I mentioned to the oncologist about the research being done on bisphosphonates. He agreed it is an area we can do something about now that I am post-menopausal, so I started taking Fosamax (once weekly). There was an article in the last MAMM Magazine about the fact that 75% of women with advanced bc (like us) also have bone mets. (See January 2001 MAMM Emerging Therapies, pg. 37) Are any of you taking Fosamax or another bisphosphonate? Is it good/bad for us?

Thanks a million to you all and for the list founders for this WONDERFUL resource.

Monday, February 5, 2001

I’ve been trying to reach the Charlotte Institute of Rehab to get me in the lymphedema clinic. It’s been 2 ½ weeks since I saw Dr. Stewart. They finally called me tonight at 6pm. I have an appointment this Friday at 8am. The nurse said that I will meet with a therapist who will give me a list of compression garments that I will have to buy, and that insurance probably will not pay for them!!! So now I’m worried about that. She did mention some grant money, so I will have to check on that. I plan to ask my friends at Bosom Buddies on Wednesday what the deal is. This is a whole new area for me!

Friday, February 2, 2001

I had met with Mac, Brant’s brother several times to tell him which supplements I’d like to begin taking, now that most of my treatments were complete. Brant was able to get them today. So, now, I’m taking a multivitamin, astragalus, CoQ10, CLA, milk thistle, a calcium supplement, and selenium.

When I need it, I also have echinacea and acidophilus. I’m taking tons of supplements a day now, but I feel much better.

Thursday, February 1, 2001

Today, I went for my 2 month checkup with Dr. Chapman. When I walked in, I told Trish (his med. Asst.) “I had a CT scan on Tuesday; you better get on the phone now!” I spoke with Dr. Chapman for 30 minutes asking him questions. I had one of the nurses give him a copy of my notes from the Philadelphia conference last week, so hopefully he’d have a chance to review them before my appt. We were very thorough and everything went well.

I went to the chemo room for chemo and my CT results were brought to me. Basically, they found no evidence of cancer. BUT, my liver spots were not visible on the CT. And, I once again have a seroma (pocket of fluid) in my right chest area.

Well, what does this mean? My liver spots went away? Were they cancer and responded well to treatment? I HAD to know before I left the office. On my way out, I told Trish I had some questions for Dr. Chapman.

He came out of his office and discussed the results with me. Said they are very good. He also said we’ll never know whether the CT took a different slice and didn’t see the liver spots, or whether they were mets that responded to the Herceptin. My thinking is that they were visible in April and July (3 spots measuring less than 1cm each), in October, they only saw one spot, and now in January, they don’t see any. According to Dr. Chapman, they were even too small to biopsy, so we really don’t know what they are and where they went. He set me up for another MUGA scan at CMC on February 12.

Tuesday, January 30, 2001

I had a follow up CT scan today at Presbyterian Hospital Matthews. What a difference from CMC! Friendly employees, no waiting, in and out in a matter of minutes!

I’m still in the process of applying for disability through Social Security. I don’t know what the outcome will be.

Friday, January 26, 2001

Brant and I got Haley on the bus, sent Christopher with Papa, and boarded a plane to San Juan! Our cruise time was finally here! We boarded the Nordic Empress and cruised to St. Thomas and St. Maarten before returning to San Juan on Monday. We thoroughly enjoyed the trip. I rarely talked about breast cancer—instead concentrated on having fun! But, I really missed the children.

Wednesday, January 24, 2001

Attended the Bosom Buddies support group today. We had a speaker from Compression Works who discussed mastectomy bras, prostheses, and lymphedema. It was a great group. After the group, we had our Breast Cancer Task Force meeting with U.S. Representative Sue Myrick.

Brant made me make up brochures about myself before the conference in Philadelphia last weekend. I thought it was silly, but did it anyway. Today I really had the chance to give them out. During the task force meeting, there was a woman who spoke and mentioned that she’d put together a speaker’s bureau for breast cancer. I approached her afterwards and gave her a brochure. Also my friends from Bosom Buddies wanted one as well.

During the meeting, Sue Myrick looked at me and said, across the room, “Now, Debbie, I understand that you attended a conference last weekend. Can you share some of what you’ve learned with the group?” I was so impressed that she remembered my name, and then I got to share some of the highlights of the conference with the whole group!

Saturday, January 20, 2001

I attended the Living Beyond Breast Cancer Conference today in Philadelphia. It was kind of weird to be there alone in a city I’ve never visited before, but I took a lot of good notes. Met some very interesting people and brought back some informative information and brochures. The highlight of the day was getting to attend an afternoon Q & A session with Dr. Larry Norton of Memorial Sloan Kettering and ask him questions about IBC.

My conclusions after attending this conference were that there is absolutely nothing that I’m NOT doing to fight my cancer. There are no hidden miracle drugs or therapies that I don’t know about. I believe now that I am about as well informed as I possibly could be.

Thursday, January 18, 2001

Today, I was asked to speak at the Stay-at-Home Moms group at church. When I got there, Sarah the president of the group told me she had 38 reservations for lunch. That's about twice as many people as normal. I said, "They're all coming to hear me?" She said, "Yes! You are such an inspiration to us." I couldn't believe that they all wanted to come and hear me speak. I figured they were all tired of hearing my story, but that isn't the case.

After lunch, Sarah introduced me. She said lots of nice things about me-how I've inspired and scared her (because cancer can happen to anyone). I told my story then started asking questions about breast cancer. I asked how many women had had mammograms (this is a young audience-usually under 35) and a bunch of hands went in the air. I said, "You mean, you've all gotten mammograms because of me?" And they nodded. I could have cried right then and there.

I spoke for about 25 minutes, and then took questions from the moms there. They asked lots of good questions, and then I ended. There are bags in the middle of each table where the ladies can put donations in honor of each speaker. I asked Sarah how we did. She said that last week, they only got $13. This week, it was over $50! I asked Sarah to donate the money to the pastors' discretionary fund which helps families in need.

Wow! What a wonderful experience today was!!!

Wednesday, January 17, 2001

I finally got to see Dr. Stewart (lymphedema doctor) today at Blumenthal Cancer Center. She checked my arm and said, yep you’ve got lymphedema. I could have told her that, and not charged all the money! She says they say you have lymphedema if your two arm measurements are different by two or more centimeters. Mine were around five centimeters in my forearm. I also have lymphedema in my side and my upper back. Dr. Stewart says she will refer me into the lymphedema clinic. It’s a 3 week clinic, Monday through Friday, for two hours a day. That means I need to find babysitting for Christopher for three straight weeks. I should be starting after we get back from the cruise, or the first week of February. Dr. Stewart wants to see me back in two months.

January 14, 2001

Email to IBC group

I would like to hear from some of you who have been out of radiation for some time. I completed 30 rads (electrons with bolus) in early August. So, that's five months ago. I'm still a big bright pink square. I had four different treatment areas. I'm still developing lumpiness around and beneath the mastectomy scar line. My oncologist and surgical oncologist did physical exams and said that the lumps are a normal part of post-radiation and they are not concerned. I want to believe them, but it's hard when I'm dealing with such an insidious form of breast cancer... I do have a repeat CT scan in a few weeks. Any thoughts on when the redness will fade and the lumpiness? (By the way, I am very fair skinned).

Friday, January 12, 2001

I am so excited! I decided to go to a breast cancer conference called "Living Well Today for the Promise of Tomorrow" on Saturday, January 20 in Philadelphia. This is a daylong conference for younger women affected by breast cancer. Plenary speakers include: Larry Norton, MD, of Memorial Sloan-Kettering Cancer Center renowned as a leader in the development of drug treatments for breast cancer; and Lillie Shockney, RN, BS, MAS, the Education and Outreach Director at Johns Hopkins Breast Cancer Program.

Dr. Norton will present information on the prevention, detection and treatment of breast cancer in young women, and Mrs. Shockney will discuss sexuality and intimacy for younger women and partners affected by breast cancer.

Monday, January 8, 2001

Today I had a telephone interview with Social Security about applying for disability. Apparently I’ve worked enough in the past 10 years to qualify at least to the next level. I had to fill out a lot of forms with doctors’ names, hospitals, and tests and they will send my file to a caseworker in Raleigh to see if I qualify for disability payments. I am seeking disability on the basis of advanced breast cancer, lymphedema in right arm, reduced left ventricular heart function, high blood pressure and depression. I’m sure I can come up with a couple more if they need it! From a printout I got from Social Security last year detailing my earnings over the years, I would receive $882 a month. That would help out so much! I don’t see how anyone would hire me seeing as how I receive weekly chemo; go to the doctor so often, etc. We really need financial help and maybe this is it.

Thursday, December 28, 2000

Dr. Chapman called with the results of the echocardiogram. My LV function was at 49%, which he says is at the low end of normal. It is enough of a change from my 60% pre-chemo numbers that he is concerned. He will allow me to continue Herceptin for now, but wants me to be re-checked in two months. If it continues to deteriorate, he will take me off the Herceptin. I said we don’t know if it’s the Herceptin or the Adriamycin that caused this drop in LV function. I asked him if it could have anything to do with the fact that I’ve had a cold for the past 8 weeks and have been on three different antibiotics. He said that wouldn’t affect my LV function.

So, I plan to continue taking the Co-enzyme Q10 that I started a week ago, and I’m going to go to the YMCA as often as possible for cardiovascular workouts. I figure if I can increase my LV function at all in the next two months, even by one point that would prove that the Herceptin is not causing this heart problem and I’ll be allowed to continue. Not great news, and not bad news either.

December 28, 2000

Today, I got an anonymous Christmas card yesterday with the words "You are an inspiration" written in it. It was not signed, nor was there a return address. Inside was a packet of seeds and $50 of gift certificates to Harris Teeter. The Lord works in mysterious ways! I wonder who my anonymous benefactor is? I tried checking the handwriting on the sign-in sheet that I have a copy of, but no luck!

December 28, 2000

I hope everyone had a wonderful Christmas and plans to have a happy New Year!

I wanted to give you all the latest on my health. I went for a routine heart scan on Dec. 4 and it showed my left ventricular (LV) function at 42%. Now, I am by no means a heart expert, but the left ventricle is what pumps the blood throughout your body. The chemotherapy I've had CAN reduce heart function and damage the heart muscle, so an echocardiogram was called for. I had that last Friday and the doctor just called to give me the results.

Before chemo, my LV was at 60% which apparently is in the normal range. The test last Friday showed my LV at 49% which is in the low end of normal. The doctor is concerned that if we continue my weekly chemo treatment that it could carry a risk of reducing my heart function further. As of now, he's letting me continue my treatment and plans a follow up heart scan in two months to see if there is further deterioration or improvement.

So, again I need your prayers. This weekly chemo that I'm taking, Herceptin, I believe has killed the remaining cancer cells in my body and is keeping me in remission. So I would like to continue taking it if at all possible.

Those of you that know me well know that I plan to search the internet to see if there is anything I can do to increase my LV function on my own.

Thanks for your continued prayers and support. We're doing just great, kids have been wonderful, and we expect to continue this uphill climb!

Take care and Happy New Year!

Saturday, December 23, 2000

I had the echocardiogram yesterday. It was just an ultrasound of my heart. No big deal. The nurse says that Dr. Chapman should have the results on Tuesday. I guess we’ll hound him then!

Monday, December 18, 2000

I went to see my primary care doctor, Dr. Mabry because I’m having my third sore throat in six weeks and have had an almost constant cold the entire time. I’ve been on two antibiotics, and enough is enough!

Dr. Mabry sent me for a chest x-ray because I was wheezing, but all was clear. He put me on a stronger antibiotic, feeling that I was having an extended sinus infection that hasn’t cleared. He also gave me an albuterol inhaler in case I had trouble breathing. I noticed on Saturday when I was singing that I had to take breaths more often while singing. So this is probably a good thing.

I’m scheduled for an echocardiogram this Friday, December 22 at CMC. I’m so surprised that no one has asked me about the meds I’m taking (such as Coumadin and Atenolol) that I think could affect my heart. Also, I had a flu shot three days before my last MUGA scan.

I organized an IBC get together for February at the Buddy Kemp house and posted it on the IBC list and will be put in the Buddy Kemp newsletter. Good response so far! I’m looking forward to meeting others with IBC!

Saturday, December 16, 2000

We went to a Christmas party at Buddy Kemp for the kids. I sang my heart out at the piano and had a sore throat afterwards. Sore throat continued to get worse over the weekend.

Wednesday, December 13, 2000

Wendy and her friend Dale came to the meeting. It was nice to meet her. She’s scheduled for mastectomy on Monday. We had a good meeting at Buddy Kemp.

Tuesday, December 12, 2000

I finally talked to Wendy, another young mom with IBC in the Charlotte area. I’ve been emailing her friend Amy and finally got to talk to Wendy. I asked her to come to Buddy Kemp tomorrow so we can meet and talk. I can’t wait to finally meet someone else with IBC!!!!

Friday, December 8, 2000

Dr. Chapman is not overly concerned, but says he wants to schedule me for an echocardiogram which is basically an ultrasound of the heart and will show any problems if they are there. If this test is fine, I will continue as I am. If it’s not, I will have to discontinue Herceptin! I’m trying not to worry too much. The test is scheduled for two weeks from today at the dreaded CMC.

Thursday, December 7, 2000

Went for chemo and asked the nurses to follow up on my MUGA scan. Come to find out, my ejection fraction was at 42%, but they later counter themselves in the report by saying some sort of visual test showed in the more normal 50% range. Ambiguous to say the least. Doctor Chapman is supposed to call me tomorrow after he reviews my information.

December 6, 2000

Dear Friends and Family,

Well, today is my one year anniversary from diagnosis of breast cancer. I’m not sure how I feel. On the one hand, I am sad and melancholy because I remember the terror and despair of a year ago. It’s been a really, really hard year. I’ve been abruptly weaned, poisoned, slashed, poisoned again, deep fried, and had my innards removed. My life will never be the same. Every twinge, pimple or bump can become a recurrence in my mind. No more carefree living.

But, here we are a year later. I’ve survived a particularly deadly form of breast cancer, and come through with flying colors. I have a positive outlook and my faith in God has only strengthened and deepened this past year. I’m much more appreciative for what I have, and I don’t take bs from salesclerks and customer service people anymore. My hair has grown back nicely, my kids are still doing great and my dog still loves me. Brant deserves the husband of the year award for all he’s done for me. At times, he’s had to be both Mom and Dad to the kids and to me. He’s taken care of me, got the kids off to school, held me when I’ve cried, cooked meals, cleaned up, gone to the store, and never complained. On top of all that, he’s had to continue to work to provide for us and had some financial setbacks, too. I am so lucky to have him. My family, especially my mom has been there for me whenever I needed. Thanks Mom!

I wanted to thank all of you, sincerely, from the bottom of my heart for all the well-wishes, cards, meals, and emails that continue to arrive. They mean so much to me. Unfortunately, cancer is not something that will just go away. Because my type is so aggressive, I feel that I must be particularly vigilant about taking care of myself. If I've learned anything, it's that none of us are exempt from things like this happening in our lives. It's what we do with it and how we choose to live our lives from now on.
You all mean so much to me. Thank you for your continued support!
Love, Debbie

Monday, December 4, 2000

Everything’s been normal. I had another bout of strep throat and am finishing up more antibiotics. That’s two bouts of strep throat in a month!

Today I had a MUGA Scan at CMC. It’s been 8 months since my last scan, and I suggested it to Dr. Chapman last week at my visit. He’s pleased with the CT results. He’s scheduled me for a follow up CT in January. If all’s well then, he will probably space them out every six months or so. Looking good!

November 18, 2000

I wrote an email to Dr. Susan Love, the author of the Breast Book, and considered to be one of the foremost breast experts in the country. My question was this: since inflammatory breast cancer cells have a faster doubling rate (about 60 days) than "regular" breast cancer, a good-sized mass could be detectable in about 5 years instead of the normal 8 to 10. For the immediate five years before my diagnosis, I was virtually always pregnant or breastfeeding. So, theoretically, my estrogen production would be down. How could I get such a large, estrogen receptive, aggressive tumor if I was pregnant and lactating the entire time? I have not been able to rationalize this in my mind and wondered if someone on her team could help.

This was her response:
Sorry it has taken so long for me to get back to you. I have been continuously traveling since the beginning of October on a book tour for my third edition and my team felt that they should save your question for me to answer personally. First of all when we say that a cancer has been there for 6-8 years or estimate a doubling time we are doing just that estimating. We do not ever know the doubling time of any individual tumor. It is suspected that breast cancers do not continuously grow but rather spurt and rest and spurt again...so it is impossible in any one person to know when the cancer might have started. Having said that, being pregnant and lactating means that you had high levels of estrogen and progesterone as well as prolactin. All of which have been shown to stimulate breast cancer. There are several good epidemiologic studies (look in the third edition for the exact references) showing an increase incidence of breast cancer in women during and right after pregnancy. This increase in incidence gradually goes down in the years after a pregnancy and is back to normal after three to five years. It is likely that the hormones of pregnancy will feed an indolent cancer and cause it to spurt...just what happened in your case. It is also true that the risk of breast cancer is higher in women with late pregnancy (after 30) probably because the mutations that lead to cancer have already had a chance to form and then are fed by the estrogen and progesterone. As of yet we do not know if fertility drugs add to this increase but it is likely that they will have some effect. All this to say that your situation is not unusual. I hope this helps you come to terms with the situation.

Sunday, November 19, 2000

I was asked to speak at church today about my cancer experience and how groups at church were able to help me. I had to speak at all three services. I wrote it yesterday! I was to speak for 5 – 7 minutes, and it just came to me. I was also very calm all morning, as though God was with me telling me everything would be alright. I did take an Ativan, but I don’t really think I needed it.

Then, as we were leaving, it was snowing!! Big, fat wet snowflakes coming down. Haley & Lauren had stayed through the whole church service, and I was very proud of them.

Apparently, my speech touched a lot of people. I felt really good after it was all over. We went home and the kids played in the snow. Before Thanksgiving! If we had gone to Alabama with my mom’s family, we would have missed all of this wonderful snow. They’re having lots of rain down there anyway.

My anniversary of diagnosis is coming up. I’m not sure how I’m going to feel yet.

Thursday, November 09, 2000

I went to chemo today. I asked the chemo nurse to see if Dr. Chapman could talk to me about my concerns, but by the time I left, he hadn’t come around. Typical of a doctor’s office! They’re always overworked.

Wednesday, November 8, 2000

Went to Buddy Kemp and the group was much better. There were eight women and I was able to get my fears off of my chest. The ladies there helped me decide that I need to talk to Dr. Chapman about my report and let him know my fears and talk about it. My next doctor’s appt. is not for three weeks and I don’t feel like I can wait that long.

Saturday, November 4, 2000

The first annual ACS Making Strides Against Breast Cancer 5K. Brant, myself, the kids, Mom & Dad, and Becky participated. They raised over $600 for the ACS!!! I was so proud. We put the kids in the double stroller. I carried the IBC umbrella with ribbons denoting “pathfinders” and “warriors”. I got a lot of attention with that umbrella. Brant decided to run, so Becky, Mom, and Dad took turns pushing the stroller. I walked the whole 3.1 miles holding the umbrella. It was hard, just six weeks after my surgery, but I did it!

I asked Dad to bring his digital camera and he took pictures of the race. Then, we all went out for coffee. Brant and I were pretty much slugs for the rest of the weekend.

Thursday, November 2, 2000

Went to Carolina Place Mall for a pink and black tie event for the ACS Making Strides. We lighted candles, ate snacks and made small talk all while fanning ourselves because it was so hot! Brant and I left and went out to dinner—a nice surprise and very much needed, too.

Wednesday, November 1, 2000

I went to my Bosom Buddies support group today. The turnout was very small—just me and two other people. Since there was a newly-diagnosed lady there, she was very scared and had lots of questions. I left very depressed. I’m not able to share what’s going on with me for fear of scaring the new people. I have concerns about my liver lesions, etc., that the others in the group can’t possibly understand. I almost always feel like I am the worst off one in the group. That gets kind of old.

Tuesday, October 31, 2000

Finally got the CT scan results. Dr. Chapman called to give me the news. He feels that it was a good report and that we will re-scan again in three months.

When I finally got a copy of the report faxed to me, I was worried about a few things.

One, it states there is a 9mm liver nodule that is well-defined, but they don’t know what it is. Also, it says that the other two liver lesions present on previous CT scans are not present on this one. What are they? If they were some sort of scar tissue, they wouldn’t just disappear. I’m thinking they were cancer and if so, then the Herceptin got rid of them. But if they are cancer, that puts me in a whole new ballgame.

It shows an area on my right chest wall that is “probably” post irradiation change. Well, I sure hope so, but with this cancer being so aggressive, I’m not happy with guesses. I want to know more.

Tuesday, October 24, 2000

Had a CT scan as a 3 month follow up today. Can’t wait for the results.

Monday, October 23, 2000

Not much went on with me last week; it was a pretty normal week. My uncle Bobby went to the hospital and had an angioplasty on Wednesday. On Friday, my cousin Erin had a baby girl. It was pretty busy down in New Orleans.

My energy has increased. I took the kids to the park and a few other places on Friday. On Saturday we went to see the leaves changing in the mountains. Then we went out to dinner for our anniversary. Mom and dad left for Cozumel.

Brant gave me a diamond ring for our seventh anniversary today. I was very pleasantly surprised. I needed a ring, since my wedding bands don’t fit anymore, but I told him to get me a plain band and instead a got a gold band with three diamonds set into it. Very nice!

Saturday, October 14, 2000

I spoke at the 10:30 session. I had to talk for an hour. Of course, I was very nervous, but it went off very well. My topic was Family in Crisis and I spoke about my story, weaning Christopher, breast cancer and breastfeeding statistics, sudden weaning, and how to help a family in crisis. It went very well, but only about 10 people showed up. I was a bit disappointed.

We didn’t get home until 9:30 that night. I was exhausted! Now, my speaking engagements are almost over. Our church called last week and asked me to give my testimony at all three services on November 19!!!

Friday, October 13, 2000

I left at 8am for Fayetteville for the annual La Leche League Area Conference.

Tuesday, October 10, 2000

I had my first post-chemo haircut this morning. I felt terrific! Vickie did a great job. I put on my new outfit and really, really felt good about how I look for the first time in a long time. Hallelujah!

Saturday, October 7, 2000

Race for the Cure was today. I got downtown at 6am to work in the survivor’s tent. That was really enjoyable. It was cold and windy. But, I got to hand out t-shirts and pink caps to breast cancer survivors. It made me feel really good.

Brant made a poster to put on the stroller that said “We are Walking in Celebration of Mommy”. He painted an IBC pink ribbon on it, and put pictures of our family on it. Then he rigged it so it could be seen on the double stroller. Then he, the kids and both of my parents walked the non-competitive 5K in my honor. I got to see them off and also when they finished. I also saw Debbie Chandler. She and her kids walked too, and had my name on their backs. I handed out some IBC brochures at the vendors’ booths. It was an all around great time. I felt good helping out, and my family got to see all the breast cancer survivors!

Wednesday, October 4, 2000

Today is Brant’s birthday. It is also the Breast Cancer Survivor’s Luncheon at Carrabas on South Blvd. for the Making Strides events. It was very nice. We had lunch and a fashion show. Again, treated like VIPs. I could get used to this!

Monday, October 2, 2000

Today, Dad, Christopher & I went to Carolina Place Mall for the unveiling of the Faces & Voices of Breast Cancer. It was really nice. They treated me like a VIP. They have a mural at the mall with 48 breast cancer survivors’ pictures on them. They had a nice ceremony at the water fountain. There were pink ribbons everywhere. Dad came with me and helped with Christopher (Haley was at school). It was good for him to go. There were a few speakers. They are selling breast cancer beanie babies and pink ribbon necklaces and giving the proceeds to the ACS. There is a storefront upstairs with breast cancer resources (although we ran out of time and didn’t get to go in). I was interviewed by channel 4 & 6 and was on the news that night. We taped it, although they showed like maybe ten seconds of my interviews. Now, I’ve been in the paper and on TV. I’m becoming a local celebrity!

Thursday, September 28, 2000

Last Friday, Brant & I went to see my ob/gyn. I wanted to know why they did all that they did while I was in the hospital. For starters, when they used the oxygen pulsometer on my finger, my oxygen level was at 80. When they did the arterial blood gases, it was at 40. She says they start to worry when the level gets down to 60. Basically, my organs weren’t getting enough oxygen and with a lowered blood volume from the blood loss during surgery, they decided to transfuse me, give me more blood and give me oxygen so I wouldn’t damage any organs. She said my lungs were in imminent danger of collapsing and were starting to collapse. That’s why they gave me the blood and oxygen. The reason they tested me for the pulmonary embolisms (P.E.s) was that P.E.s could cause my oxygen level to drop like that. They reasoned that if it wasn’t a P.E., then I would bounce back. So they did all those tests to check for blood clots, found none. The next day, I bounced back and had oxygen levels in the normal range, so they knew for sure it wasn’t a blood clot. A blood clot would not let me improve like I did.

It made me feel much better to know these things. I had no idea I was so bad off!

I’ve been doing okay this week. I just started driving today. My only symptoms are that I'm sore. I’m sure this will just take some time to heal and I am taking it relatively slow.

Tuesday, September 19, 2000

I held my two-year-old baby in my arms and he fell asleep, his head slightly sweaty as it gets at naptime and looked at the afternoon light filtering in through the fingers of the window blinds. I thank God that I am at home and have the ability to hold my baby. The last week has been pretty awful.

Wednesday, September 13 I went to the hospital with Brant and met my parents there around 9am. I was sent to a little room for pre-op processing, given a gown and my wristbands. They accessed my port, gave me something to make me woozy and the last thing I remember was someone holding a gas mask over my face as I was wheeled down the hall.

I went into surgery around 12:00 noon, instead of 10:30, when I was supposed to go. The nurse called Brant around 1:30 to say the procedure was going well. The doctor came out at 4:15 and said the surgery went fine and she was able to perform an internal hysterectomy instead of having external incisions. The healing time for this procedure was to be shorter than if they had to cut me in the belly.

Then, I woke up in a room, but I don’t really remember much about that. I was given a Demerol PCA pump and told that I had lost about a liter of blood during the surgery.

Brant brought the kids later, but I don’t remember much about the visit.

By Thursday, I was throwing up a lot. Of course, in retrospect, it was because of the Demerol. But, I was getting better. I had a constant headache, but my lower body pain was not too bad. They kept giving me Demerol and Zofran for the nausea. I had a couple of visitors and the phone rang all day. Brant left to go to his computer class and I went to sleep.

Friday, September 15, the doctor came in to check on me. My oxygen saturation level was down to 84% and I was having trouble breathing. I was very out of it. Very lethargic. They started me on oxygen, but I just couldn’t take deep breaths. My blood pressure dropped way down and my pulse rate shot up. My doctor told me she was going to give me a blood transfusion because maybe the blood I lost and the fact that I was very anemic was the problem. I remember calling Brant who was on his way to an eye doctor appointment and telling him to come down to the hospital. They were giving me a blood transfusion. I was kept on oxygen and received four units of blood that day.

In addition, the respiratory staff did these horrible, horrible tests on me called arterial blood gases. They were the best way to see if my body had enough oxygen. They hit a tiny artery in your wrist. It hurt so badly because there are a lot of nerve endings around your arteries. The first sample was clotted, so they had to re-do the test. The second wasn’t so bad. Then they did a third test later that day after I had been off the oxygen for 15 minutes.

My doctor brought in a consultant, an intensive care doctor. She called him a lung doctor. I don’t even know his name. They were worried about me and contradicting each other at the same time. One felt that I may be bleeding internally, and the other was worried about blood clots in my lungs, pulmonary embolisms. That was scary to think about. They decided they needed to do more tests.

A technician was brought into my room and they did a lung x-ray, right there. It was inconclusive, except that it showed old lung scarring. I said that must be from the radiation. My doctor kept talking about a radiated gut. I guess because I’ve been through cancer therapy, my body reacts differently to surgery and bleeding than others might.

Then, I was taken downstairs for a nuclear medicine test. Still with my oxygen tube in my nose, a tech placed a mask on my face and held it there for three minutes while I inhaled radioactive particles they believed would settle in my lungs and show them if there were any blood clots. After this procedure, they injected me with more radioactive particles and did the same thing. The whole procedure took about a half hour. My doctor stayed with me throughout the whole procedure. I was told by the surgeon that if any clots were found whatsoever, I was to be rushed downtown to a larger hospital for an emergency procedure similar to angioplasty where they would go into the vein in my groin and place an upside down umbrella up in there to catch any blood clots. The catch 22 was that I couldn’t be put on blood thinners because I had lost so much blood, so there wasn’t much they could do about the blood clots. Thankfully, even though I thought I would end up going in a trip in an ambulance downtown, there were no blood clots found.

They sent me back to my room with the oxygen still on and watched me constantly. Brant stayed with me that night.

The next morning, Saturday, they again wheeled me downstairs and did a Doppler ultrasound on my legs to see if there were any blood clots there. Again, nothing was found. Also by this time, I was taken off the Demerol and put on anti-inflammatory drugs and did much better. The nausea stopped and so (finally) did my headache.

Then some crackpot respiratory therapist from Russia whom I’ve nicknamed Yakoff Smirnoff came in to do another dreaded arterial blood gas test. Just then, a tech from the lab came in for more blood samples. Instead of getting them herself, she decided to have Yakoff do a piggyback and take the sample she needed for herself along with the blood gas test. Well, a lot more blood was needed than they usually would get arterially, and that stupid Yakoff had the needle in my arm wiggling it around, honest to God, for five minutes. Luckily for me, both doctors were present at the time. Tears were streaming down my face. They decided they didn’t need the stupid test if it was going to cause me that much pain. I know that if Brant had been there, he would have punched Yakoff.

My doctor said my oxygen level had improved, and took me off oxygen, but had me use a breathing machine to increase my lung capacity. The respiratory people came a few more times that day and my oxygen level was always in the nineties. I always took a few deep breaths before they tested me!

The lung doctor told me that I am now and will forever be a candidate for a flu shot. I would be susceptible to pneumonia and the flu, although I don’t really understand why.

Everyone left and I was very lonely. Brant called from Becky’s house where the whole family was eating dinner, laughing and the children were playing outside on the swing set. I’ve very rarely felt so alone. However, I felt it was important for the children to go home with their dad and try to get back to a normal schedule. Instead of me coming home on Friday, now it would be at least Sunday.

Sunday morning, I dragged myself out of bed, dragged the IV pole into the shower and bathed for the first time in five days. Then I very slowly and methodically dressed myself in my own clothes and tried to pack. Then, I sat on the chair and waited for the doctor to come. I did not want to sit in that hospital bed again. Brant and the kids came and soon after, my doctor came in, too. She released me and put me on antibiotics and sent me home.

We came home and we all had a hard time adjusting at first. There was a smell in the house that I couldn’t stand, and I made Brant air out the house. Seems, though, it was all in my head. I’ve had a horrible taste in my mouth, no doubt from all the meds I’ve received this week. The kids cried a bit, but we soon settled into home life once again.

Surprisingly, I have had very little lower abdominal pain and almost no blood from the get go. Amazing! I was feeling pretty good Sunday, slowly moving around and taking Tylenol as needed for pain.

Sunday night, I had a terrible coughing spell and I think it made my diaphragm very sore. Yesterday, Monday, was worse than Sunday. I had a hard time moving around and had diarrhea. Today is better. I can get around. I made my lunch, but I am slow moving. I haven’t had to take anything for pain. Yea!

I think all that blood transfusion and testing was wasted time. I was throwing up a lot the first two days and my diaphragm was very sore. I think it was this reason I was breathing so shallowly and not getting in enough oxygen. Since they could not find a reason for my malady and the tests showed nothing, I think I’m right.

Now I have to worry about the effects of a blood transfusion. Namely, the transmission of HIV and Hepatitis C. They say, don’t worry, the chances are very small. I looked it up on the American Red Cross website and the chance of me getting Hepatitis C from a blood transfusion is about 1 in 100,000. But my odds of getting my IBC at 34 were even rarer! I plan to ask for blood tests to rule out these things. I wish I didn’t have to think about this stuff, but my God, what if I get HIV and give it to Brant? These thoughts aren’t ruling my life, but they are certainly in the back of my mind.

Now, I just feel slightly achy in my lower abdomen, like I’m getting ready to have a period. But it’s not so bad. And recovery time will be so quick since there was no incision. At least I have that. I am so grateful to be back home with my family.

I vow that I will do everything in my power to keep the cancer from returning. I guess that means improving my diet and exercise, too. For the rest of my life. This week, since I can’t exercise (or even drive), I am concentrating on trying to eat five fruits and vegetables every day and I plan to build from there. I don’t want to have any regrets.

Tuesday, September 05, 2000

I’m starting to get a little scared about the surgery next week. My ob/gyn called me last week after my visit and said she is going to try to do a vaginal hysterectomy instead of an abdominal cut. She wants to examine me this Thursday to see which way she will do it.

My surgery is scheduled for next Wednesday, September 13. She told me I will be in there at least three days.

Of course, that brings up a whole new set of problems. Now that Christopher started mother’s morning out today, someone has to take him and pick him up. And, someone has to be here for when Haley gets on and off the bus. To make matters worse, Haley is off of school on Friday, so Brant will have both kids then. I asked Brant’s parents to be here next Wednesday and Thursday to help with the kids. I think my mom wants to be with me at the hospital on Wednesday. Obviously, no one will be able to spend the night with me at the hospital, but I’m a big girl.

The doctor says there is a 4 – 6 week recovery period. So, I wanted to get this over with before the holidays are upon us. I told her that I wanted her to remove everything that insurance would pay for—so we’re doing a total hysterectomy including ovaries. I joked that she could take my appendix, a kidney, whatever I didn't need!

After surgery, I’ll be able to start on Arimidex, which is an oral drug in a newer class than tamoxifen. I’ve done a lot of research on that drug and it seems very promising. Studies show that it is even more effective than tamoxifen.

Monday, September 4, 2000

This past week, I took a lot of pain pills, but I also took very good care of my skin. Cleaned it with hydrogen peroxide and water, put Neosporin on the areas that were open and Aquaphor on the areas that weren’t open. I washed a lot of undershirts this week. They would always be crusty in the morning from sleeping on them and the scabs sticking to the shirt.

Here’s another one for the "things they don’t tell ya file", how about not being able to sleep because your side hurts too much. I wake up constantly every night.

August 30, 2000

Email:

Dear Friends and Family,

A lot has been going on in the past few weeks. I got the wonderful news that I'm in remission, I completed radiation and now I'm about to have more surgery.

I completed radiation about 2 1/2 weeks ago, and I'm in some pain, but have great pain killers for it. It's like having a really bad sunburn across my chest. Another way to describe it is that my skin feels two sizes two small. But, if it helps to keep the cancer from returning, it's a small price to pay. Hopefully I'll be back to myself in about a week.

Which is a good thing, because two weeks from today I'll be having a total hysterectomy!!!! Without getting into too much detail, my original tumor was estrogen receptor positive, so we need to keep my body from producing any more estrogen. Since estrogen feeds the tumor cells in my case, we don't want any tumor cells to come back or to grow. So the best way to do that is surgery to remove those parts that produce estrogen. Apparently, I will be in the hospital at least 3 days and recuperation time is 4 to 6 weeks.

I try to live my life by three rules: One, I pray a lot. My spirituality is important to me. Two, I want to always have empathy for others. I try to put myself in other people's shoes, try to treat them how I'd want to be treated, etc. And three, live my life with no regrets. That includes making sure my loved ones know I love them before they die, and to do everything possible to keep this darned cancer from coming back. So if it means a little more surgery, so be it.

I am still doing really well. I'd like to be back to normal before the holidays hit. I'm planning to go to southern Alabama for Thanksgiving to see family and want to be doing well by then.

Thanks for your continued prayers and letters of support. I am truly blessed to have you all in my life.

Take care,
Debbie

Saturday, August 26, 2000

This past week has been a busy week. Haley started kindergarten full-time on Tuesday. On Thursday, she wanted to ride the bus, so she started riding the bus. I cried and cried. I can’t believe my baby is riding a bus to school!! Seems like only yesterday she was born.

I’ve been in a lot of pain this week. The area under my arm is still oozing. The corner (all the way under my arm) has healed, but the area a few inches away where there is an indentation from the surgery, still oozes. To make matters worse, the rest of my treatment area is getting really red. I went and saw the doctor on Wednesday, complaining of the radiation pain and also a sore throat. The doctor looked in my throat and said it looks like strep and put me on an antibiotic and told me to continue with the Silvadene cream and hydrogen peroxide. There is this stretchy netting that goes around my trunk to hold gauze pads in place without adhesive. It hurts my red areas when I lay down.

Finally, yesterday (Friday), I was basically crying all day and Brant called the doctor. After I talked to the nurse and described my symptoms (large red area, that seems to be swollen up but no peeling, and pain), she and the doctor think I am allergic to the sulfa in the Silvadene cream. They told me to discontinue using it and just use Neosporin on the areas that are open and they prescribed a pain pill (Lortab). Beth, the nurse, is going to call me on Monday morning to see if it’s any better.

Last night, I even woke up in the middle of the night to take a pain pill. It is very hard to sleep with this red area. I barely want clothes touching it. I’ve become somewhat of a hermit so I can go around with not much clothes on and let the radiation burns heal. The pain is just as bad as after surgery. I’m hoping it will get better in a few days and I can get on with my life.

On Wednesday, the 24th, we had our first breast cancer task force meeting with U.S. Rep. Sue Myrick. There were about 20 women there and we discussed problems faced by women (and men) with breast cancer. Areas of focus include insurance, patient advocacy, clinical trials.

Quite a busy week. I’m hoping next week will slow down a bit, but I don’t think so. I meet with my ob/gyn on Tuesday.

Saturday, August 12, 2000

This morning we had Haley & Christopher’s party at Celebration Station. There were a total of nine children. We had a good time. The weather was nice and the kids had a lot of fun playing games and putt putt.

Went home and took a long nap with Christopher. I’ve been very tired lately. I guess it’s due to the radiation, but I’m noticing it more now.

Then, we went to my mom’s house for dinner and they had a surprise party for me. Mom & Dad, Chip, Becky, Lauren, Tommy, Carl & Barbara, Mac, Debbie & Scott and their kids and Brant and our kids were all there. What a nice surprise. They had decorated the whole house with streamers and balloons. They even had a medal for me to wear. A restaurant that Mom uses a lot for work provided the food for free. An Italian feast. It was a really nice time and I wasn’t expecting it. Mom went to a lot of trouble. I know I’ll remember this party for a long time to come.

Friday, August 11, 2000

I went to see Dr. Chapman today. I’ve gained 26 pounds since the start of chemo. Very depressing. I asked him about the next step in my treatment plan. He said I have two options: stop the estrogen production with surgery or take tamoxifen. He said tamoxifen carries risks such as endometrial cancer and blood clots. I said I’m interested in surgery to get rid of any place the cancer may return. Dr. Chapman confirmed today that my cancer is in remission!!!!

He had the nurses draw blood to check my thyroid to see if that’s why my weight has increased so much, but he says he typically sees his b.c. patients gain weight then stay at that new level. Also, he’s checking my liver levels. He says we’ll do a repeat CT scan in 3 months to see if anything has changed. Then, he told me to come back in two months.

I had chemo next and called everyone on my cell phone to say that I’m in remission. Mom was shouting on the phone. She was so excited that she couldn’t work and left early.

Later, I had my last radiation treatment. My skin continues to get redder even on the areas that have not been treated this week. It burns and itches, but not too bad. They seem to think I’ve tolerated the radiation pretty well. I have a few "hot spots" on my skin that I’m treating with Aquaphor and trying to air them out as often as I can. I go back for a checkup with the radiation doc in three weeks.

I called and made an appointment with my ob/gyn for a consultation on the surgery in about 10 days.

Brant, Chip & Becky and I went out to La Paz to celebrate my remission.

Tuesday, August 8, 2000

Today is Haley’s birthday. The grandparents all came over and both kids opened their birthday presents. As soon as they all left, we had a huge thunderstorm and lost power. We ended up all four of us in my big bed with candles lit all around. Brant brought out his guitar and started playing. Haley fell asleep while Brant played and we both sang. It was one of those moments I knew I’d remember all of my life. Christopher went to sleep later in my lap.

Sunday, August 6, 2000

I haven’t written for a while. I still don’t have the results of my bone scan. I did have my treatment planning. The boost will be in a large rectangular boxed area that covers all three of my scars on the right side (two mastectomy and old one from 8th grade). I removed all of the tape from the other areas after my radiation on Friday. It took several layers of skin off. One area is pretty bad and didn’t start to scab up until today. At least I am numb in that area so it doesn’t hurt, but it sure doesn’t look nice.

Hopefully I’ll get the bone scan results tomorrow. One more week of radiation. Hallelujah!

Haley’s birthday is in two days, and Christopher’s the day after. Busy, busy, busy!!!!!

Thursday, July 27, 2000

I had chemo and radiation today. Going well. No side effects except that my skin is very pink and a bit swollen in the collarbone area. Showed it to the doctor who said it is some inflammation and is probably dose related. He’s not worried about it. It’s just some fluid.

The radiation folks moved my treatment time to 3:00 every day, so it’s been much more of a struggle to get there with the kids. For instance, I led a LLL meeting this morning, had to pick up Haley from summer camp at 1:00, go to chemo at 1:30 and radiation at 3:00. I asked Mom to take a half day off of work to help me. I couldn’t do this all on my own!

Next Wednesday, I have my treatment planning for the boost to my scar area. Now I have to get coverage for Tuesday morning which is a bone scan, and Wednesday afternoon which is the treatment planning. Whew!

July 25, 2000

Email:

Hi everyone,

I got some good news last week. My latest CT scan shows no signs of cancer left in my chest!!!!! The weird thing is, I've been afraid to celebrate. I want to make sure that everything will continue to be okay. The CT scan continues to show three small lesions on my liver, but the doctors can't tell what they are. They have neither grown nor shrunk since my last CT scan in April, so the doctors think they may be cysts that have been there my whole life. They are too small to biopsy, so they will continue to watch that area, but they don't think it's cancer.

I guess I should breathe a sigh of relief now. I am about halfway through my radiation treatments. I go every day Monday through Friday and have weekends off. I am supposed to get a total of 30 treatments, and I've had 16 so far. No side effects except that I'm a bit more tired than usual. I continue to get weekly chemo (Herceptin). Since it seems to have worked for me, the doctor plans to keep me on it indefinitely. It will be my little weekly trip to the doctor--and usually takes only about an hour. Once I complete the radiation treatments in mid August, I think I'll be ready to celebrate.

Thanks to all of you who have continued to keep me in your prayers and still drop me cards and notes from time to time. I still very much appreciate that. I will be facing some more surgery within the next two months, so I hope I have time to recover from all that's been going on before that time comes.

Again, thanks for your good wishes and continued prayers!

Love,

Debbie

July 20, 2000

Email Message to IBC Support group

Hi everyone,

I just got the results of my follow up CT scan. The oncologist says there's no cancer remaining in my chest. The only thing I'm concerned about is 3 little lesions on my liver. The doctor's not worried about them. They haven't grown or shrunk since CT scan in April. Says they may have been there all my life and I didn't know it. They are characterized as less than 1cm each.

Do I start celebrating now? It's so weird, even though the test shows no remaining cancer, I'm scared to be optimistic and celebrate. Have any of you felt this way?

Thanks,
Debbie

Monday, June 19, 2000

The radiation oncologist has pushed my final planning session back to Thursday. They are doing 3-D planning for me and it takes a lot of time. I’m not sure what exactly that all means, but I know there are a lot of computers involved. They took digital pictures of my face and my chest for my file!

I’m supposed to start leading my LLL breastfeeding support group meetings again on Thursday, so I will have to call the office and reschedule the radiation planning session.

Haley is in summer camp all week, so that’s nice for her. Makes it a little harder on me with all the appointments I have, etc., and having to make arrangements to drop her off and pick her up. Oh well, Brant’s home next week because he has a few vacation days to use up. That will be nice.

Friday, June 16, 2000

Email:

Hi everyone,

I realize that I haven't sent out an update in a while because nothing new has been happening.

I completed my 8th and final round of chemo on June 2. I continue to get Herceptin every Friday. It is administered by IV and takes about an hour to an hour and a half. Sometimes I bring Haley with me. She'll read books while I read the paper. By the time we're through reading, I'm ready to go home! Christopher is another story. Since he's not quite 2, he doesn't have the patience to sit and wait, so I have to make arrangements for him every Friday.

I had a scare a couple of weeks ago. Found a red area near my scar that comes and goes. None of my doctors are concerned, though, and just want to keep an eye on it. It may just be a lymphatic problem unrelated to cancer.

I now get to add another doctor to my growing list: a radiation oncologist. I had what's called a planning session on Wednesday where they make you lie still on a table for two hours while they draw little purple marks all over you. They're trying to determine where to radiate me. There's a lot of computer-aided 3-D planning and other things I don't know anything about. I go back this coming Wednesday, and if all goes well, I will be starting radiation this Thursday, June 22. From what I understand, I will get radiation Monday through Friday for 6 - 8 weeks. They are zapping most of my right side of my chest and sternum, and my lymph nodes up to and over my collarbone. From the marks they left on me, it looks like an awfully large area! The radiation oncologist says he wants to make sure they get good coverage. Since my cancer has a tendency to recur in the skin, they will be giving me extra radiation to get any stray cancer cells. Side effects include fatigue, reduced pulmonary function (because they will be zapping part of my lung), and skin sensitivity and burns.

I'm looking at this as a last step in a long ordeal and hopefully will be declared NED (no evidence of disease) after radiation is complete. I will continue to get the Herceptin every Friday during radiation and for the foreseeable future. They don't know how long to give it, because it is so new on the market. Some women in the clinical trials have been on weekly Herceptin for several years now!

My spirits are still generally good, my hair is growing back and I don't have to wear a wig or hat anymore. Yea!

I have been asked to be on a breast cancer task force with our U.S. Representative Sue Myrick here in Charlotte. Rep. Myrick is also fighting breast cancer. I can't wait to see what this is all about. Also, there is a race in November called "Making Strides against Breast Cancer" sponsored by the American Cancer Society and they have asked me to be one of their 48 "faces of breast cancer". From what I understand, my picture and story will be put up at a local mall along with the other breast cancer survivors. I guess I am now the poster child for young mothers with breast cancer! Ha! Ha! Well, if it makes just one young woman stop and think about being checked for cancer, then it's worth it.

Thank you for all of your continued good wishes and prayers. It means so much to me.

Love,
Debbie

Wednesday, June 14, 2000

I went to Matthews Radiation Oncology at 8:45 for a planning session. We met with Dr. Liang and we were armed with questions. He says he’s treated a lot of women with IBC, and it also appears that Dr. Girard has spoken with him and they are in concurrence with my treatment plan. He told us side effects of the radiation include fatigue, skin tenderness (possibly with weeping, open skin) and loss of pulmonary function. Because of the type of cancer I have, I must be radiated aggressively deep and shallow to get the skin and the chest wall.

Then, I had to lie in a simulator for two hours without moving with my arm over my head. By the time it was over, I had tears streaming down my face and I was very sore. We left there and had a half hour to get to CMC for my CT scan. They made a mold for me so I would be in the exact same position for radiation each time, and I had to bring that to CMC for the CT scan. It was a long day.

Tuesday, June 13, 2000

Brant had to open up a can of @#$% to get the MD Anderson pathology report. Finally called MD Anderson and had them fax it to us. It looks the same as the CMC report, only four of the slides were broken in transit, so they were unable to determine much about the area below my right breast (where the accessory nipple and additional cancer were). At least we know they concur with what I have.

Monday, June 12, 2000

Still waiting on the second opinion pathology results from MD Anderson. They have been sent to CMC, but CMC won’t release the results to us. Only to the oncologist’s office. And of course, that’s like pulling teeth to get them to do anything to help me out.

Wednesday, June 7, 2000

Dr. Girard (the doctor I wanted to see) called me and basically said I would be getting the same treatment at Matthews as I would if I went to see her. I decided it’s a moot point. I don’t get to see Dr. Girard, but I do get to go to Matthews. I’ll do my homework and ask Dr. Liang all sorts of questions when I go next week.

Monday, June 5, 2000

Dr. Flippo drained about 65cc of fluid. Last time (a month ago) it was 25cc. So it was significant. She examined me and said she doesn’t believe the cancer is returning. The redness must be due to something else. She’s not concerned enough to want to do a biopsy, but wants me to return in three weeks for a follow up.

We went to the Grove Park Inn over the weekend courtesy of my parents. Brant played golf and I slept.

Sunday, June 4, 2000

Last week, I started getting a red area under my right mastectomy scar. It would kind of come and go. I really noticed it after I had a glass of wine. By morning, it would be gone. Of course, I’ve been worried about it. I showed it to Brant and we decided that it was probably my new prostheses and bra rubbing against the scar area. But I know better. I know my body, and I know that it’s the IBC coming back to my skin. I’ve been very upset. I mean, I haven’t even gotten to hear that I'm in remission, and now it appears that it’s coming back.

I went to see Dr. Chapman on Friday June 2 for my last chemo. I showed him my area. He said it looked as though two things were going on. First of all, I was flushed and my whole trunk was red, front and back and my upper arms. Then the area where my breasts used to be were white all except for the red area under my right scar. He said it appears that I’m having some sort of photosensitive reaction perhaps with some of the medications I’m on. The other area, under my scar, he says we’ll just have to watch for now. He wants me to come back in three weeks to follow up on that area. In five weeks, he wants me to have a follow up CT scan of the thorax to see where we are. He also said that even if it was the cancer coming back, we wouldn’t be changing my treatment plan. Since it’s in the skin, radiation would be my next course of treatment and that’s coming up in a matter of weeks.

I wanted to have Dr. Donna Girard do my radiation. She’s the breast specialist in Charlotte. Unfortunately, she works out of another hospital and my insurance company will not allow me to see her there. The radiation oncologists of Charlotte are one big group. Some doctors go to some hospitals. They thought I was going to have to have all my radiation at CMC which would be a major hassle because it’s about ½ hour drive each way and getting the kids taken care of while I go there every day for six weeks would be a major, major hassle.

They finally decided I could go to Matthews Radiation Oncology which is about 5-10 minutes from my house, but I have to see another doctor than the one I wanted.

I’m a bit upset by this, because I want the breast specialist, but I guess I don’t get to see her. I had Myra from Buddy Kemp put in a call for me, but I don’t think it will do any good.

Tomorrow, I’m going to see Dr. Flippo and have her drain some more fluid, and also ask her opinion about the red area.

May 28, 2000

Email to a friend:

Hi, how are you?

Now that dance recital, end of the year programs and school are over, I am sighing a big sigh of relief. It's going to be nice to have nothing to do. I have no plans for this week (that I can think of) other than chemo on Friday. It will be my last round of Taxotere (eight in all) and then I will move on to radiation. I have my planning session with the radiation oncologist on June 14. We will be there for several hours while they run tests, do CT scans and put me in a simulator while they decide on the best course of treatment.

I had my pathology slides from my surgery sent off to MD Anderson in Houston for a second opinion. MD Anderson seems to specialize in my type of cancer. Did you see the HBO special on cancer? Anyway, there are two women in my breast cancer support group that sent off their slides to MD Anderson and got different results than the pathologists at our local hospital gave them. Since my cancer is rare and very aggressive (including very high rates of recurrence), I want to make sure I'm getting the BEST possible care I can. This includes changing surgeons (which I did), constantly testing my oncologist about new drugs and studies that I read about, and now going to the "breast specialist" for my radiation. I'm treating this cancer experience like I've always lived the rest of my life. I don't want to have any regrets. I have no regrets about my cancer treatment experience so far.

I've been doing a lot of praying and visualization when I can. It's hard to find quiet time around here!

Take care,
Debbie

Monday, May 22, 2000

Today I started my period. Haven’t had one since January or February. I shouldn’t be surprised, since I knew I was ovulating two weeks ago. I called Dr. Chapman’s office and wanted to let him know. The nurse said he was not concerned. I meet with him next week, and I plan to discuss this with him. How could I be having a period when the blood test said my ovaries had stopped working? Obviously they haven’t. I’m worried about estrogen feeding my tumor. Why is it that I’m the only one concerned about things: liver lesions, period returning, etc. I guess they’ll be concerned when the cancer flares up. Well, I’m not taking that chance. I will demand to find out what we can do when I see the doctor next week. I’m to remind him that we need to schedule a CT scan and I will ask him about chemical or surgical oopherectomy.

Wednesday, May 18, 2000

This round of Taxotere has been better. I’m sure it had to do with the dosage. The soreness in my neck is less, I’m having less taste problems with food, etc. I am still very tired, however.

Dr. Chapman mentioned to me last week that he’s checking on whether I will be taking Arimidex instead of tamoxifen. Seems Arimidex works the same as tamoxifen, but with less side effects. I told him that all last week I felt like I was ovulating. My ovaries hurt and I had increased vaginal discharge, though no bleeding. He didn’t make much comment. I guess we’ll cross that bridge after radiation.

I have a radiation oncology appointment next Tuesday. We’ll see where that leads.

Last weekend, I went and tried on new breast prostheses. The new lighter ones are great, although expensive. The lady at the shop had to call my insurance company to see what they would cover. I ended up buying a $110 mastectomy bathing suit since I plan to go to Carowinds and the pool a lot this summer. Insurance covers "temporary" or water boobs, and all but $92 of each of the real boobs. They also pay $24 towards a bra. Of course the bras are $40 each. So my out of pocket will be $220 not including the bathing suit. They always get you somehow.

Friday, May 12, 2000

Went for my third round of Taxotere. I mentioned to the nurse that on my original treatment sheet from the other office, it said my dosage was 140mg of Taxotere, and last time (my second post-op round) they gave me 160mg. Which was correct? She checked with the doctor and said, "you’re right. It’s supposed to be 140mg!!!!!" Can you believe it? Now, not only do I have to be my own patient advocate, I have to check my IV bags and make sure they’re giving me the correct dosage. That’s probably why I felt so crummy after the second post-op round!!!!!

Thursday, May 4, 2000

I haven’t written very much lately, but there’s not been much to tell. I go for Herceptin every Friday and Taxotere every third Friday. I’ve only had slight complaints. The past two weeks, I’ve gone for Herceptin and gotten a hematoma under my skin over my port. It has hurt for the nurses to access my port. I’m thinking about having them do it in my hand tomorrow and give my port time to heal. I’ve found that I’m slow healing I guess because of the Coumadin I’m on.

Also, I’ve noticed a lot of fluid accumulation in my right scar. I’ve been going to Dr. Flippo about every ten days and having the fluid aspirated. I’m a bit worried that this means I’m not healing and maybe there’s more cancer raging in there, but everyone I’ve talked to says that it’s probably normal (including the nurse). I see Dr. Flippo tomorrow morning before my chemo, and I will ask her if it’s normal.

My arm has not swollen any further, and yet it hasn’t gone down either. I try to keep it elevated, but I don’t do much sitting around at home. We’re always on the go.

It’s still a pain in the booty getting my treatment coordinated. For example, tomorrow I have an appointment with Dr. Flippo at 9:00 and Herceptin at 11:30. Mom and Dad are keeping Haley overnight tonight so that Dad can take Haley to school tomorrow. I’ve asked Brant's folks to come over at 8:30 tomorrow and get Christopher. My mom will also come over at 8:30 to take me to my doctor’s appointments. Brant is going to a sales meeting. It is much more complicated than I wish it were, but that’s because I have small kids, I guess.

I don’t see Dr. Chapman for another week, so I won’t know anything about how I’m doing with the chemo until then.

Wednesday, April 19, 2000

Last night we went to the lecture at The Palm. Dr. Slamon had a conflict so one of his underlings came and gave a slide presentation. It was way over our heads and Brant and I both felt a bit uncomfortable. But we learned a few things. I am on the best protocol I can be on right now. That made me feel really good. They’re continuing to do clinical trials. Dr. Chapman came and sat at the table with us.

Today I went to Bosom Buddies. Love that group. I’ve had a lump in my forearm which Dr. Flippo says we’ll watch but didn’t seem indicative of lymphedema. From time to time, I have pain like bruising on top of my hand and the top of my forearm. Now, there’s a lump on my forearm at the crook of my elbow and it’s getting bigger. I’m planning to ask Dr. Chapman what he thinks about it tomorrow. I go for Taxotere/Herceptin round two adjuvant chemo tomorrow.

Monday, April 17, 2000

I’ve been having trouble sleeping. Don’t know why. Last night I felt like I was crawling out of my skin. I finally got up and took 2 Ativan. That took care of my problem. But I was laying there in bed and thinking about this cancer and how much it has robbed me. It robbed me of nursing my baby longer. It robbed me of ever having another child. It robbed me of my innocence. It robbed me of my breasts. It robbed me of time spent with my family enjoying life rather than worrying about dying. It robbed me of sleep.

I am sick of being robbed. I want to turn the tide, ride the crest, be king of the hill for once. Instead, I look in the mirror. See the woman with the stubble on her head and a flat chest and am constantly reminded of the daily horror I am living through.

I have shooting pains in the right side of my chest if I move my right arm just so. Makes me scared to scratch an itch. I’ve also had pain that feels like bruising going up my forearm from the area between my thumb and forefinger. There’s a slight swelling on top of my forearm that you can see. Dr. Flippo said it is something we’ll watch, but is nothing to be overly concerned about. The bruised feeling on top of my hand is going away, but is still there on my forearm.

I’m scared of getting lymphedema so I’m taking great precautions and watching my arm carefully.

Tomorrow night we go to the lecture at The Palm restaurant. I bought a new blue linen outfit for the occasion. I’ll write more about that after the lecture. I hope we meet Dr. Slamon and I hope Dr. Chapman makes it there and talks to him about me.

Friday, April 14, 2000

I saw Dr. Chapman who for the first time made me feel like I was wasting his time with my concerns over the liver lesions on my CT report. I’ve never felt like that until today when talking to him. Maybe he’s getting sick of all of my questions. Maybe I was just anxious, I don’t know. He says we will retest in 2 – 3 months. It is at this point that I realize I will not be reassured until I am retested and find out whether the cancer has spread or that I just have cysts from chemo or something.

Chemo went well. Another nurse put the IV in and it didn’t hurt like last week. Very uneventful. No side effects other than being sleepy from the Benadryl. They give you Benadryl and acetaminophen with the Herceptin. This week, they gave me IV Benadryl instead of oral. Really knocked me out.

Thursday, April 13, 2000

I called the doctor’s office to find out if I can meet with Dr. Chapman tomorrow to discuss the CT report before or after my chemo. Finally, after three phone calls, I get word that I can talk to the doctor tomorrow. Brant talked to the triage nurse and she read the doctor’s report to him and his fears were calmed. Not me. Not until I look the doctor in the eyes and he tells me I have nothing to worry about. I have heard too many stories on the Internet and in group about women who are told, "let’s wait six weeks or six months and then see…" and next thing you know, these women have full blown disease.

Wednesday, April 12, 2000

I went to Bosom Buddies today. This was the first time I’ve driven since the surgery four weeks ago.

Since I'm not allowed to pick up Christopher (18 months old),I taught him to climb into the van using his stepstool, and then to climb into the car seat. It takes a bit of coaxing for him to climb into his seat, but he will do it. I just can’t get the stroller out and use it. I can’t push the stroller, neither can I put the stroller back into the van!

Brant called while I was in group, and told me that Trish at Dr. Chapman’s office called and my CT scan results were good! I shared the good news with the group.

Brant requested that Trish fax us a copy of the CT report. When I got home from group, I looked at the report. It didn’t look good to me. It basically said I have an enlarged spleen and there are lesions on my liver which cannot be ruled out that it’s not metastatic disease. That doesn’t sound like a good CT scan to me!

I took Haley to Fit Kids and music class and cried while I was there. Just thinking about that CT report. Are liver lesions a sign of mets? Are they just cysts? I don’t know. But I guarantee you one thing, I cannot wait 8 days until my next oncologist appointment to find out.

April 8--14, 2000

I've had no side effects from the Herceptin. I think the Herceptin weeks will be okay. I checked out the book "Her-2/Neu: The Making of Herceptin" from the library again. I read it once when I checked it out from Buddy Kemp, but I want to read up on Dr. Slamon before he gets here next week. This has been a pretty normal week. I still can’t do a lot. Dr. Flippo still aspirates fluid from my chest every time I see her which has been about once a week. She told me to wrap up with the ACE bandage again and we’d see if that helps with the fluid. It seems to be working.

Friday, April 7, 2000

Today, I went for my Herceptin treatment at Dr. Chapman’s new office. He’s in a temporary office for 3 – 4 months while the new office is completed. They have a chemo room with eight chairs in it. No privacy! I couldn’t believe it. MUGA scan was clear.

A couple of weeks ago, Dr. Chapman said that Dr. Dennis Slamon, one of the pioneers of Herceptin was coming to Charlotte, and that he hoped to corner the doctor while he was here and ask him about my case. Specifically, how long Dr. Slamon thought I should be on Herceptin. Dr. Chapman has said 12 weeks and then we would reassess. Brant asked Dr. Chapman if he could go to the talk and meet the doctor himself. I rolled my eyes, but Dr. Chapman gave him the phone number of the drug rep who’s sponsoring the lecture. Brant called her up, left her a message that we’d be interested in attending. Well, wonder of wonders, she called back and left us a message saying she’d be happy to have us as her guests at the Palm Restaurant on the 18th. Sometimes it pays to have kahunas!

I had my first Herceptin only treatment in the chemo room. It wasn’t so bad. I told them I felt like I was at the Red Cross giving blood. For a 30 minute transfusion, it took 3 hours start to finish. The office had only been open for two days and it was chaos in there. I hope it’s not always going to be this way. The only other thing is that the nurse, Gloria, must have accessed my port kind of funny, because it hurt the whole time the needle was in, and it hurt when she removed it, too. Yikes.

I was kind of tired from the Benadryl, but we went to Chip and Becky’s to pick up the kids. All I could do was sit there. I was so out of it.

Thursday, April 6, 2000

I went to the clinic for a CT scan of my chest and another MUGA scan of my heart. We won’t have the results for a while, I guess, since the clinic is in the process of closing and my doctor has already left. I have an appointment with Dr. Chapman tomorrow as well as my second Herceptin infusion. I suppose we’ll talk about whether the cancer has spread, tamoxifen and if I’ve really gone post menopausal! Well, I’m still very, very sore because Grandpa gave me his chest cold (unknowingly), I’m dealing with surgery aches, and I guess some chemo aches too. I’m going to stop writing for now so I can get some good pain meds in me so I can sleep.

Wednesday, April 5, 2000

Today, I went to my Bosom Buddies support group at Buddy Kemp Caring House. How I look forward to seeing those ladies. My whole week revolves around them now. Mom took the day off of work and went with me. She and dad went to a group for family members last week and said it helped. It also helped her to come to my group and see what we all talk about in there. Mom is taking my cancer really hard. I wish I could do something to ease her mind. But I have to be true to her and to myself. She asked her HR dept at work if she could go to a 4 day work week temporarily so she could spend a day with me and take care of me. I thought that was so profoundly special. That means the world to me. I wish she could be with me every day. Funny, I never thought I’d say that, but we’ve come a long way in our relationship. The week she spent taking care of me and the kids was so, so, so nice. Then, Brant tells us that he cleared off Fridays at his work too. Now I have two family members to take care of me each Friday while I go through this chemo. I am so blessed!

Tuesday, April 4, 2000

Went to Vickie’s so the kids could get their hair cut. Had an okay time. Tuesday night, Brant rented the Sixth Sense and we watched it again. Then, we had a real heart to heart, down to earth talk. Brant cried a lot. I think the HBO movie we watched last night really scared us. He told me I’m his best friend. I held him a lot and reminded him of all the wonderful, selfless things he’s done for me and the family. Time and time again I talk about him to people and let them know how he never complains. He just keeps taking care of all of us. He told me that I am his soul mate and we both agreed on that. I think I managed to make him feel a little better, but now I realize just how scared he really is. He doesn’t want to show it, or even to talk about it to a third party, but talking about it with me really seemed to help him. I just hope caring for our family doesn’t overwhelm him. A couple of times this week, I’ve cried "I don’t want to die". I’m so glad I have the Bosom Buddies to talk to because they understand. If I said that to someone who hasn’t experienced cancer, they’d say, you have to be strong, positive, blah, blah, blah. But the fact is, that we cancer patients do get scared for our lives at times and have to deal with those feelings too.

I went into the bathroom after our long talk and opened up a book for cancer survivors and there was God talking to me on pg. 31 saying that when I can’t carry myself, HE’s there doing the carrying. It put me so much at peace, at ease. It was as if God was saying, "Don’t worry, I’ve got everything under control. Just lean on me." I shared the passage with Brant. Don’t know if it helped him or not.

Monday, April 3, 2000

I FINALLY got to go to a Look Good Feel Better program, which is in conjunction with the cosmetics association and the ACS. It was a 2 hour program on wigs, hats, makeup, etc. And they gave you a free box of full size name brand makeup. I really enjoyed myself. My father-in-law had a "chest cold" but still watched Christopher. Uh oh. Brant went to Buddy Kemp and met Myra. There was an HBO special on cancer on Thursday and Myra taped it for me. She said it had a woman on there with IBC and it was positive, so we watched it. It was not so positive. The woman went through stem cell, was declared NED and 11 weeks later IBC came back. The doctors were describing it like "wildfire" and the doctor they showed didn’t seem to think there was much else she could do. They ended it with this woman on Herceptin. Brant & I got very depressed after watching that show.

Sunday, April 2, 2000

I'm feeling a bit more tired, but still expecting reactions from chemo that I didn’t get. I am still so sore from surgery and frustratingly so. I still need an armload of meds to go to sleep at night. I’m thinking it’s fluid buildup again. I go see Dr. Flippo on Wednesday. I did nothing today, Brant took care of me. Mom & Dad came over and we had a pow wow about scheduling for the upcoming week. I have something planned every day next week.

Saturday, April 1, 2000

Today, I was feeling like myself, mostly. Except they forgot to give me my Neupogen and the doctors aren’t there anymore! Ended up going to the main clinic pharmacy for a prescription for Neupogen. Don’t want to miss out on that good stuff. Then we went to Kohl’s to buy me some clothes. I was worn out by the time we got home. Did too much, I guess.

Friday, March 31, 2000

Today, I went for my first Taxotere/Herceptin infusion (aka chemo #6). I was expecting chills and fever because the loading dose of Herceptin is twice the regular dose, but I never got those side effects. I was also worried because this would be the first time they used my new porta-cath (which is a little tube under the skin near my collarbone that gives direct access to a vein for chemo), but that too went well. They sprayed this freezy spray on it, and I barely felt a thing. Dr. Chapman was in the hospital, so I didn’t see him. He had an irregular heartbeat. It was the last day for him at his old office, probably the stress got to him. I will miss the nice chemo nurses there. I had a phone call a couple of days ago telling me that my ovarian function has stopped, so I don’t have to have an oopherectomy. Relief. One less surgery to deal with. Now I guess I’ll start tamoxifen.

March 30, 2000

Email:

Hi all,

I saw the oncologist Tuesday. He did a bunch of blood work to determine if I had to have my ovaries removed since they produce estrogen (which can feed the tumors). Well, my ovaries have shut down. I am officially in menopause and at least don't have to have more surgery for now!

I start chemo tomorrow. Taxotere (which I had previously) 4 rounds with three weeks in between. And Herceptin, a new miracle drug on the market, will be infused weekly indefinitely. More testing next week, CT scan, heart scan, etc. to see if the cancer has spread elsewhere in my body. I wish I had better news, but we are pinning all of our hopes on this new chemo treatment, especially the Herceptin.

As always, I am receiving a lot of cards, well wishes and meals. I continue to be overwhelmed by your concern for me and my family and ask that you continue to keep us in your thoughts and prayers.

Love,
Debbie

Thursday, March 30, 2000

The kids were gone most of the day and I was alone. A friend of the family, Kristen, took Haley to Discovery Place and dance class. I think that being alone was a mistake. I spent much of the day crying and being scared. It’s easy to be scared when you think about the full spectrum of what cancer can bring. I think I’ll try to stay busy from now on. A little down time is okay, too much can be self-destructive.

Wednesday, March 29, 2000

Today, I went to Buddy Kemp for my Bosom Buddies support group. I try to get there every week if I can. This week was kind of hard getting appointments and drop offs scheduled, but went pretty smoothly. A nice lady named Janet May brought me home and bought me lunch at Atlanta Bread Company. I had talked to Janet on Monday. Her best friend had IBC and had been on Herceptin for a year with NED (no evidence of disease)!!! Really made me feel good. I also went to see Dr. Flippo for follow up. She was an hour late. Took 80ccs of fluid out of my chest and told me to come back next week. Chest feels better, though still sore. Grandpa & Bari treated us to dinner.

Sunday, March 26, 2000

I am so tired of not being able to do anything. I had two drains removed on Friday (9 days after surgery). The last drain was still draining too much to remove. I thought it would hurt to remove the drains, but they didn’t hurt, the stitches removal hurt more than the drain removal. I also thought I’d feel better immediately on that side, but I still can’t sleep comfortably on my right side. I sleep better on my left side with the one drain still in!

I can reach a little further than last week, but I’m not improving as quickly as I thought I would. I guess I have to take baby steps. Mom still helps me open the car door and put on the seatbelt. I hate feeling helpless. I miss being able to pick up the kids and just kiss and hug them. At least now I can hug them with a pillow between us. But I am still so sore.

The back of my right arm and all across my chest is numb. It has been hard to keep clean because I can’t raise my right arm, it’s still swollen under my arm and it smells! I try to swipe deodorant on my underarm and get some stripes on, but can’t apply it like I used to. I’m sick of taking half baths because I can’t get my bandages wet. It’s been 11 days and I still can’t take a shower or a full bath. I smell.

I walk with my arms slightly out to the side because I am still so sore, and Chip made fun of how I walk today. I know he was just joking, but it really made me sad. I’m sick and tired of being sick and tired! I just want to heal so I can go back to chemo and at least be able to help with my kids.

Grandpa and Bari are coming to spend the week with us helping. I hope they realize what they’re getting into.

I want to sleep through the night without pain and without having to lie on my back. I want to be me again!!!!

March 23, 2000

Email:

Dear Friends and Family,

A lot of you have been wondering how my surgery went. I was waiting to get the pathology results before writing and we got them yesterday. The surgery went just as I expected. It was not fun, I am sore, but I'm healing. My mom is with me all week helping with the kids, and then my in-laws will be helping out next week.

Mom and I went to see the surgeon yesterday for a follow up visit and got the pathology report—it is not good news. Apparently, there was a tumor that was removed that was 8cm. big (which is very, very big by cancer standards). This was a tumor that we could not feel and did not know was there. Both my oncologist and surgeon were unaware that this particular tumor was there. The doctor took additional tissue and muscle at the time of surgery because it looked unusual and she wasn't sure what it was. That entire sample was cancerous. There were no clean margins at all. Therefore, I still have cancer and she did not get all of it removed. In addition, with the lymph node sampling, 12 out of 26 came back positive for metastatic carcinoma.

We felt like we were dealt a major blow yesterday. We just weren't expecting to find that the cancer had spread to the lymph nodes, nor that there is still cancer there. We are in shock.

I have talked to my oncologist's nurse today and have an appointment with them on Tuesday and an appointment with the surgeon on Wednesday. It seems that we will be doing more chemo starting perhaps as early as next Friday. I will be starting on a new type of therapy called Herceptin and continuing to take Taxotere.

Please continue to keep us in your thoughts and prayers and I will update you when I see the doctors early next week. Thank you all so much for the cards, flowers, and prayers. I appreciate them very, very much.

Love,
Debbie

Wednesday, March 22, 2000

Mom has been with me for three days now. It’s been nice. She took me to see Dr. Flippo this afternoon. Dr. Flippo changed my dressing and addressed my questions about the drains, exercise, etc. Then she came in with the pathology report. Mom and I were in shock. I still have cancer. There were three bad areas on the report.

1) They found an 8cm tumor in my right breast. Neither Dr. Flippo nor Dr. Chapman were able to feel the tumor and were unaware that it was there. It was deep in my breast, along the chest wall, and they didn’t know it was there. An 8cm tumor is a very large tumor and is not good news.

2) Dr. Flippo went into the area of my biopsy scar and removed a lot of breast tissue she found there. She found it unusual to have so much breast tissue below the breast. I said it probably came from my third nipple. She removed a lot of breast tissue and some muscle in that area because she wasn’t sure what was there. The whole sample was cancer. Therefore, I still have cancer. She was not able to remove all of it, so some is still growing in me. There were no clean margins in any of the samples she removed.

3) 12 out of 26 lymph nodes came back positive. The cancer has spread to my lymph nodes.

I think, in retrospect, we were naïve. Mom and I both thought that the cancer would be gone but it is not. We hurried home to tell Brant and Dad. Everyone was crying. Brant took it very hard. I’ve never really seen him cry, but he cried a lot tonight. We are all very stunned and scared.

Monday, March 20, 2000

Surgery was five days ago. Brant wrote down much of what went on during surgery, so I’m going to try to write what happened after surgery.

They wouldn't let me go to the bathroom to urinate, instead insisting that I do it in a bedpan in a recovery room full of men and women. I, of course, could not do that. When I'd had enough (and since we had to wait for hours and hours in the recovery room for a hospital room), we took matters into our own hands and I made mom wheel me over to the bathroom, and I got myself in there and did what I had to do. Nurses make me so angry sometimes. There is no respect for privacy or for a patient's wishes!

I threw up for almost two days after surgery. I’m pretty sure it was the morphine and demerol I was on. As soon as I stopped those and started taking ibuprofen, the nausea went away and my headache went away too. I had a headache for most of the two days post-op. I looked down inside my gown and saw an Ace bandage type wrap. I put my hands where my breasts used to be and there was nothing. It was a weird feeling, because my brain kept expecting to feel something. As a matter of fact, I kept getting itching on my "breasts" which weren’t there anymore. I referred to this as phantom itching because my brain was telling me my breasts were still there, but they weren’t. Even now, five days later, it is still very weird to look down and see nothing.

I have three drains. They hurt. All of those cancer books say they don’t hurt, but they do. This morning, I noticed I can see the stitches to the two drains that hurt the most. Most likely I pulled them in the hospital and that’s why they hurt. I guess. There’s not really much out there on post-op pain. I feel more sore than pain. I feel like I did 100 pushups. And I can’t take a deep breath, because of the wrapping around my chest. Also, my right arm is numb on the back and I keep having these tingling feelings there. I guess it’s my brain at work again.

The tip of my tongue was numb and still is partially. I asked the doctor on call Friday why the tip of my tongue would be numb and he said maybe from the breathing tube and the block they put in my mouth. But it is getting better.

Let’s see, what else… I have a very hard time sleeping with the three drains in. I guess I’m supposed to sleep on my back, but that is very hard to do. So, I try to sleep on my sides and sleep on the drains, and they hurt. I take 800 mg ibuprofen and Percocet and then I can sleep. Then four hours later, I wake up and take them again. I basically can’t sleep without drugs.

My mom’s here today and all this week to help with the kids. She tried to get me to take a nap, but I tried to explain that it’s torture to lay in the bed and try to sleep. I’m so uncomfortable.

I have an appointment Wednesday afternoon with the surgeon. Hopefully she’ll remove these drains, or make me somehow more comfortable so I can get some sleep. I’m also looking forward to healing and getting on with treatment so I can get on with my life.

Brant really loves me. He has emptied my drains without a complaint the whole time. I can barely stand to look at those disgusting things, but he does it patiently and with great care. If I didn’t know how much he loves me before, I certainly know it now.

Wednesday, March 15, 2000

Surgery Day

This is the entry that Brant wrote after my surgery:

4:00 AM Debbie wakes up from sleep. She took four Ativan pills the night before to help her sleep. The doctor decided that she would sleep better if she had them. I woke up around 4:15 and took my shower. Debbie seemed to be calm considering what she was going to be going through.

I was a little more apprehensive. We picked up Debbie's mom around 5:10 and went to the hospital, arriving at 5:30 for pre-op. Debbie was taken to a room where she was prepped for the surgery. Around 6:15, Barbara and I were able to see her in a holding room. There, the nurse placed an IV into her right foot due to the surgery being performed around her arms and the doctor didn't want to busy up that area. She was given Xanax to help with her nausea. They also gave her a local anesthesia of lidocaine before the technician put the IV in her foot. They gave her phenergan, reglan, and ativan to calm her down as well as assist in the nausea. She got restless when the nurse anesthetist said that getting blood from her relatives was out of the question because it took a day for the blood to be processed and qualified for use. The anesthetist also said there probably won't be any need for blood due to the small amount that is lost during surgery. At this time, the anesthesiologist, Dr. Gabe came in and told what procedure she was going to use. We were escorted back to the waiting room at 6:30. She was falling asleep when we were leaving.

I was surprised to see all the people in the waiting room that early. The attendant notified me that surgery started at 8:00. I knew that the procedure would last at least three hours. The procedure consisted of removing both her breasts as well as any tissue that looked suspicious.

DR. Flippo took out lymph nodes from her right side in what is called stage one and stage two. She found a few small nodules in the nodes about the size of one knuckle. She also discovered hard tissue along her ridge where her extra nipple was and the tumor was located. She said the size of the mass was about half the size of her fist. Some of the hard tissue was located in the pectoral muscle area. She did a divot incision to remove any remaining tissue in the chest wall. She sent the latter specimen as a separate sample to be examined by a pathologist. The report won't be available for at least four days. About 2 1/2 hours into the procedure, the attendant told us that they were finishing up with her. Knowing that this was sooner than expected made me think that they didn't find any lymphatic spread. The doctor didn't come out to talk to us until 12:00. She said that she was pleased on her work and that she extracted all the affected area. The fact that she was talking to me made the other parties not hear the complete prognosis. Debbie's mother began to cry because she thought the doctor didn't get all the cancer.

I called the doctor back and she assured me that she did in fact get all the cancer she found. With all the previous pathology results, she was confident that possibly the only remaining cancer would be microscopic in the blood or lymphatic system. The additional chemotherapy would be able to eradicate it.

I'm confident that Dr. Chapman will indeed start another round of chemo as a precaution of further spread once she has had time to heal. My own feeling is that the use of Herceptin will be the extra tool that will keep it from coming back. I'm not sure how they will administer the Herceptin or when during the remaining time of her treatment it will start.

I was first able to see Debbie around 1:30 in the recovery room. When I first saw her, she had her eyes closed but she knew I was there. I could immediately notice they removed her breasts. She had a wrap around her chest covering the wound. Three tubes linking three drain bubbles were laying on top of the wrap. I knew she was still under anesthesia by her actions. She stated to me she wanted to tinkle, so I asked the nurse to help me with the bedpan. Debbie couldn't urinate using the pan due to its discomfort and, stated by the nurse, she was still under sedation.

The nurse checked her and said she wasn't in any urgency at that time to relieve herself. At that time, I left the recovery room and went home to get some change of clothes. I called the hospital at 3:30 and Barbara said she couldn't find out if and when she would get a room.

We heard that morning that some patients had to take semi-private rooms due to the lack of space. I immediately called the hospital again to speak with someone in bedding. They assured me she was to get a room, a private room, as one came available. I then went to pick up Haley from her Fit Kids group from church so Haley could see her mommy. She didn't want to leave her class because she was having a really good time. You know how 4-year olds are.

But she came with me anyway. We got to the hospital around 5:45. I immediately went in to see Debbie again. She told me that she didn't get to pee until 4:00. She would have had a room if one was ready, but instead, she had to stay in the recovery room for 6 1/2 hours. Barbara finally found out the room number. She and Haley went to check it out and came back stating it was a nice room.

Ed, Haley, and Barbara left the hospital at 6:30 to get some dinner and to pick up Christopher from Becky. I went down to the room because Barbara said it was almost ready. When I got there, it was. I took Debbie's clothes bag and took out her toiletries. By that time, they were wheeling her into the room. She was still groggy from the anesthesia. She threw up around 7:00 that evening. The nurse attributed it to the anesthesia.

Sunday, March 12, 2000

I’ve been having crying spells off and on. I am profoundly sad and will cry at the drop of a hat. I think that I’m putting on a brave face for most people, but my family can see through that. Brant took me out to dinner last night. But I cry on the way home. I have two more days with breasts. Forever. I’m only 34 years old. This is not fair. Haley and Christopher occasionally see me naked. What will I do after surgery? Hide away? Show them and have them be scared of me? I don’t know what to do.

I know I will have to have prostheses and special bras and swimsuits. I am thankful insurance will pay for prostheses because I understand they can be quite expensive.

I have an appointment with a counselor at the Buddy Kemp Caring House on Tuesday, a couple of hours before my pre-op screening at the hospital to help me deal with my feelings.

There is lots to consider with the kids. I need someone to watch them Tuesday during my appointments. I want Haley to keep her normal schedule if at all possible, including Fit Kids, dancing, and music class. There is so much running through my mind I wish it would stop.

Two days to go.

Thursday, March 9, 2000

I called the oncologist’s nurse first. I’ve been dealing with tension headaches at the back left side of my head for about a week now. I decided to call them and let them know. When I spoke to the nurse, I also explained my anxiety about the upcoming surgery and she called in a mild tranquilizer, Ativan, to help with my nerves. I am having trouble sleeping and doing anything really. If there is a free moment, I am thinking about surgery and I am profoundly sad at all that is happening right now.

I called the surgeon’s nurse and explained a couple of my biggest key points to having a bilateral mastectomy. She said she’d relay the message and have the doctor get back to me, but couldn’t say when. Later that day, the nurse called back and said the doctor agreed to the bilateral, but first they had to contact their patient representative to see if insurance would cover it. She called back again within a half hour and told me I had coverage for the bilateral. A hollow victory for me.

For although I know that removal of both breasts is my best line of defense against cancer recurring, I really love my breasts and I don’t want to lose them. I am very, very sad.

I cry a lot now.

It makes me angry that I (who truly used her breasts for what they were meant to do--breastfeeding) have to lose them. It’s not fair.

I do believe I want the TRAM flap reconstruction (where they take tissue and skin from your stomach and move it up to create a breast--giving you a bonus tummy tuck!), but that will be about a year from now after I’ve completed all of my treatments. So in a few short days, I will look like a boy and have to learn a whole new body identity.

Wednesday, March 8, 2000

I received a call this afternoon saying that the biopsy results were negative, all was fine with my left breast. This didn’t settle too well with me. I thought about it and thought about it and came up with a written list why my left breast should be removed as well as the right.

1. IBC has a high rate of recurrence.

2. Are there any studies showing that it won’t recur in my other breast? Anything definitive?

3. What are those microcalcifications anyway? Precursors to cancer?

4. I’m young—higher probability of recurrence.

5. Can’t do TRAM flap reconstruction one one side and go back and do other later (if cancer later recurs in other side).

6. (Brant wrote this one in) I will not take no for an answer.

7. Won’t have to take lymph nodes on left side now if breast is removed now. However, if we wait and cancer comes back on that side, they will have to take that breast AND the lymph nodes on that side.

8. Will insurance cover it?

I thought about this and thought about this and finally decided that Thursday morning I would call the doctor and give her my reasons for a double mastectomy. I could not believe I was going to have to fight to have my other breast removed. This goes against all that I am. My whole life has revolved around breasts and breastfeeding for almost five years now and here I am fighting to have mine removed. No possibility of breastfeeding ever again for me.

Tuesday, March 7, 2000

It's 8:15am and I’m at the Center for Breast Diagnosis getting ready for a stereotactic biopsy of my left breast. On the original mammograms, there were microcalcifications on the left side which no one had biopsied. My new surgeon, Dr. Flippo suggested a biopsy to determine if we should remove that breast or leave it. So, I’m taken back to a room with a table with a hole in it. I lie down on my stomach with my left breast hanging through that hole and my head turned to the right. The breast was clamped down (I guess to keep it from moving) and the technician took some mammograms. She compared to the original mammograms and the computer pinpointed the microcalcifications. The radiologist came in and numbed up the area with lidocaine then the computer-aided needle was inserted in a nick in my skin. The took about 6 to 8 samples in a radius around where the needle entered the breast. I didn’t feel anything, but I was uncomfortable. They took the samples and x-rayed them and determined they had the tissue they needed. They dressed my wound and put an ice pack in my bra. I was to go back the next day to have the dressing removed and have them look at the wound. Later this afternoon, the radiologist called to see how I was doing. Quite a change from my last biopsy when they said "see ya in a week"!!! This doctor checked on me and had me come back the next day.

Monday, March 6, 2000

Brant and I got back from three days in Hilton Head Island without the kids. My parents watched them so that we could get away for a few days before I have surgery. The weather was nice, but cool and I never got to spend time on the beach because the place we were supposed to stay at was a dump, and we ended up staying at a Residence Inn by Marriott which was on the main highway and nowhere near a beach. Oh well, at least we ate at some nice restaurants, I read some magazines and painted my nails. We also visited Savannah and rented bikes one afternoon. All in all a nice trip. Got back home and there was a message on my answering machine saying that my surgery date is next Wednesday, March 15. Finally, a date. I burst into tears. I was uncontrollably sad. I cried for half and hour. I was grateful we hadn’t gotten the kids yet. I think it was the finality of a date that really hit me. This is going to happen. I got scared and sad and everything else all at once. Brant just left me alone to cry which was all he could do.

Monday, February 28, 2000

Chemo was 10 days ago and I’m feeling fine. It was kind of weird. The doctor just gave me the Taxotere instead of Taxotere and Adriamycin in order to keep the diarrhea from coming back. I had very little nausea, but all of the other symptoms I’ve had all along. Had the yucky mouth, the weird taste in my mouth, nothing tasted good (including water and juice), I couldn’t eat sweets, on day five had the swollen sore glands. Everything but the nausea. But, last weekend, I did have more diarrhea but this time I was able to control it with medicine.

Saturday (2 days ago) we attempted to go to the mall to shop for clothes for Brant and the kids. We made it from one department store to the sunglass place to another department store and I had to leave. My wig was soaking wet and it started curling up in the back. I practically ran to the car and tore off the wig and put on a hat. It was almost like an anxiety attack, but just the sweats. After I had some water, I started feeling better. But my stamina is gone.

February 19, 2000

Email to the IBC Support list

Hello everyone,

I am looking for a little support here. I was diagnosed 12/99 and just finished my last round of chemo yesterday. First three rounds were Adriamycin/Taxotere, yesterday's round was Taxotere alone because Adriamycin was causing severe diarrhea and I had to be hospitalized last week for it. So far, this morning I feel fine. What a difference!

Now, I know I will be facing surgery in about three weeks. When I had my initial mammogram the radiologist found microcalcifications on the other breast. I have not spoken to a surgeon since I began chemo in December so I have no idea what to expect, but I suppose I will have to choose between a single or double MRM. Do you have any good questions for me to bring up to the surgeon when I finally see her in another week? What can I do mentally to prepare myself for this? I'm only 34 and plan to live for a long, long time. I'm so afraid I will flip out after the surgery and will either have to be highly medicated or sent off to the funny farm. Are these feelings normal? Sorry I'm rambling, but I would appreciate responses either to the list or to me personally,

Thanks,
Debbie

Saturday, February 19, 2000

I’m feeling fine other than a little sleepy. I am not nauseous at all. I’m wondering if I’m going to be feeling great since there’s no Adriamycin to make me nauseous and give me diarrhea. Only time will tell. I’m now facing surgery in 3 weeks and I have so much going through my mind. I'm angry at the whole situation.

I think about how much I wanted natural childbirth with Christopher, went to classes, did the exercises, ate the right foods and still ended up with induced labor and pregnancy-induced hypertension which required some serious medications during delivery. Breastfeeding was hard for me at first with both children. I eventually made it work, and now it’s being taken away from me forever. I was told I had a 50% chance of going into early menopause so there is likely no chance for me to have any more children or to nurse one if I’m going to have a double mastectomy. It’s not fair.

Friday, February 18, 2000

This past week was filled with more GI problems, and slow healing.

I went for my doctor visit, lab and chemo #4. Mom wanted to take me, so we had lunch first then went to the clinic. Dr. Chapman is very pleased with my progress. I reminded him that I had a consultation appointment with Dr. Flippo on February 29. He said that would be good timing and with her I could discuss what type of surgery I would be facing and any other questions related to surgery including putting in a porta-cath for the later use of Herceptin. Dr. Chapman said I will probably be having more chemo depending what they find in surgery and when all the chemo is done, he will begin me on Herceptin.

Herceptin is the first drug in a new category of drugs called targeted gene therapy. Some aggressive breast cancers overexpress a gene, called HER/2, and benefit from this therapy called Herceptin. It is a once a week IV administered drug, and they don’t know how long women have to be on it since it is so relatively new. There are supposed to be very few side effects to this drug.

The doctor decided to omit the Adriamycin for this treatment after researching it and finding that it was probably the cause of my diarrhea, and I was to just have Taxotere. So we went over to the chemo room and I got looped on my meds as usual. Mom thought it was quite funny. It didn’t take so long because we only got the one chemo drug. I went home and slept as usual and woke up around 6:30pm when Brant had a pizza delivered. I went into the kitchen only to find a pepperoni pizza. None for me, thanks! He ended up making me some bland food around 7:30 and I stayed up with him until around 10:30 or 11:00. Took an Ativan, but still had a hard time sleeping.

Thursday, February 10, 2000

I spent the week healing from my GI problems. Went to see Dr. Chapman for a follow up visit. He told me he will be “tweaking” my chemo next week to see if we can prevent the diarrhea this time. Told me if I wasn’t doing better by Monday, he would do a sigmoidoscopy on me. I had one of those 10 years ago, and it wasn’t fun!!!!

Saturday/Sunday, February 5 & 6, 2000

Well, I called the doctor back because the diarrhea wouldn't stop. The doctor on call told me to come into the hospital (Carolinas Medical Center). I was admitted around 10:00 am. and they didn’t even start an IV until 2:30. They gave me IV meds and a series of injections to stop the diarrhea. I was in so much pain. Lying on my side took the pressure off of my bottom. I was also very concerned about germs and washed my hands constantly.

The doctor wanted to keep me there overnight so my own doctor, Dr. Chapman could see me. When Dr. Chapman came in the next morning, he examined me and said I could go home. Yay! That experience was not fun. They were drawing blood at all hours of the night, giving me injections, checking my pressure, and the IV machine would start beeping at the most inopportune times. Brant called me from home that Monday morning and asked how I slept last night. Ha, ha. There’s no sleeping when you’re in the hospital. Brant came and got me around 10:30 and took me home and I immediately washed everything I was wearing at the hospital including my slippers.

Friday, February 4, 2000

Went to Mom & Dad’s to celebrate Mom’s birthday. We had pizza and I was in the bathroom the whole time with diarrhea. I know you don't want to read about this kind of stuff, but it may help you understand the kind of side effects cancer patients have to deal with. It's kind of hard to leave the house when your bottom isn't cooperating.

I had to call the doctor because it didn't stop all night. He prescribed Lomotil and Immodium and told me if it wasn’t better by tomorrow, to call back.

Tuesday, February 1, 2000

It's four days after chemo round #3. Feel like doo doo. Mentally, I still feel good about what the doctor said about my improvement so far. But, the same old nausea has hit although I haven’t thrown up. And now I’m getting the swollen glands.

I called my mother to wish her a happy birthday and she’s sounding all concerned because she thinks I’ve got depression. I’m like, no, mom, I’m not depressed, I’m just sad as heck at all that’s happened to me and the fact that I’ve got to face this major surgery in six weeks. It’s been really hard with Christopher around because he demands so much attention. Brant's folks come and get him, but I feel guilty. They are so much older and Christopher is quite a handful.

Haley and I had lunch today with my dad. I convinced him to tell Mom that I am not suffering from depression, I’m just sad some of the time and feeling fine other times. I certainly know the difference between dealing with cancer and dealing with depression. I asked him to get her to lay off (in a nice way).

Tomorrow I go to the breast cancer support group and I plan to pick their brains about surgery, whether I should seek another opinion, etc. I’ve heard from three different women about a Dr. Flippo and I wondered if I should contact her since she is a female doctor and Brant & I aren’t 100% comfortable with our current surgeon. I just want to be certain I feel like the surgeon has my best interests at heart, and I’m not so sure that this surgeon could possibly have that.

Thursday, January 27, 2000

I haven’t written for almost two weeks. I will try to recount the past two weeks. I have felt like myself for the most part of the last two weeks. The only problem is that I’ve had gastrointestinal problems again. The doctor gave me some prescriptions to help. Last week, I began taking Metamucil and making sure I drink lots of water, but I'm still having problems. The doctor and I think that I am just slow in healing. He says that if I wanted to pursue an answer, I’d have to go back to my primary care MD and get a referral to another specialist and have tests run. But I’ve had this in the past, so I know what it is. The pain isn’t unbearable, so I’ll just deal with it.

The other symptom I’ve experienced is mouth sores. Chemotherapy attacks all fast-growing cells in the body, and that includes those lining the mouth and the GI tract. I’ve had a big ulcer under my tongue for at least 10 days now. Got a prescription for “Magic Mouthwash” that others from the breast cancer support group recommended, but I used it once before bedtime and had a horrible taste in my mouth for most of the night. No thanks, I’ll deal with the ulcers. That mouthwash was the pits.

I’ve had intermittent bone pain in my back. It’s like phantom pain where my epidurals from childbirth were. Lower back, pain when I walk. This is from the shots I get to stimulate my white and red blood cell counts.

I feel guilty when I complain, because none of my symptoms are debilitating, yet they’re a pain in the booty. Sometimes literally.

Most of the time, I feel like myself. Two weeks, normal except for some fatigue. The third week, awful.

I went to the doctor today and after he examined me said that I’ve had the best improvement he’s ever seen after two rounds of chemo. Yay! I can’t believe it. Sure makes me feel good. I go for my third round of chemo tomorrow. I asked the doctor about high dose chemotherapy with stem cell replacement and he said it may be a possibility, but we won’t know until after the surgery. He said we’ll do surgery after my fourth round of chemo, so in about six weeks. Six weeks left of having my breasts!!!!

I still have nightmares when I think about mastectomy. I know it’s coming and it seems like it’s happening to someone else.

January 13, 2000

Email Update to Friends and Family


"Life is what happens when you're busy making other plans" --John Lennon

I first heard this phrase a few years ago, and I said, "Yeah, that makes sense." But, if you stop and really think about it.... LIFE is what HAPPENS when you're BUSY making other PLANS.

It even has a lyrical rhyme to it.

This phrase is so true!!! How many of us are living life with "what if's" and "if onlys". You know,
"If I could only lose those last 20 pounds...." "We want to have a baby, but we need to get our finances in order ...." "I'd love to go on a nice vacation, but we're saving for retirement right now." This list could go on and on and on.

What I have learned on my short journey through cancer so far is that life will continue to go on, whether you want it to or not. If I step out in front of a truck tomorrow, the world won't end. But, how I live my life can change right now. So, if you've always wanted to take modern dance, call up a local class and go! If you've always wanted to be a published author, start calling publishing houses tomorrow!

I am grateful that Brant and I are already somewhat in that frame of mind. We would rather spend money on a nice vacation, than sock all of it away for a rainy day. Don't get me wrong, it's nice to have something there for a rainy day, but we do like to live a little, too. To that end, we've taken great vacations, eaten at every restaurant in town that we desire and have learned to live with that extra 20 pounds without regret. To live a life without regret has to be the most satisfying of all.

I remember when my beloved grandmother, "Mimi" died, I was devastated. But, I knew that she and I had had plenty of conversations and SHE KNEW without a doubt that I loved her, because I told her so with cards and telephone calls. So, once my initial grieving was done, I could comfort myself with the fact that I had no regrets about our relationship. I have tried to maintain that perspective with all of my relationships. It sure is easier than having guilty feelings!

I do not mean for this e-mail to be a lecture. I just wanted to put my feelings into words and share them with those that I care about. I am reading this great book now called "Chicken Soup for the Survivor's Soul." It is stories by and about people who have survived cancer. One in particular that struck me was of a woman who was complaining about her hip problems related to cancer and how she didn't want to even try to get out of her wheelchair when she saw a young man about 10 years old push himself up onto the parallel bars and walk on his one remaining leg with all the determination and grace a 10 year old can have. This has taught me that even though I now have cancer, I still have a lot to learn from life.

I wake up every morning and thank God for the blessings in my life. Those blessings include my family and you, dear reader as well. I have been surrounded by outpourings of prayer, goodwill, cards, flowers, and meals from so, so many people that I am truly humbled. How can I be angry at my lot in life when so many people care about me?

As to a brief update, I completed my second round of chemo last Friday. All other tests have come back clean. It appears that I have caught my cancer as early as I possibly could have. This is really good news. Another soldier in the battle against cancer. I will still be facing surgery, radiation and possibly more chemo several months down the line, but I choose to focus on today and getting through this chemo. Brant, Haley and Christopher have been great. The kids and I even laugh about Mom's bald head. I have been known to whip off my wig at a moment's notice. I was joking with Brant tonight that if a carjacker were to come up to my car, I'd just take off my hair and make a scary face at him!!!!! I laugh just thinking about that.

Well, this is a long enough e-mail for now. I want you to know that I sincerely appreciate all of your love and concern for me. I keep my cards in a basket so that I can re-read them when I'm feeling blue (but so far, haven't had to do that yet!). Take care, and I promise to keep all of you updated when I have more to write!

Love,
Debbie

Wednesday, January 12, 2000

Well, that Immodium I took a couple of days ago is really working. Having lots of problems with my gastrointestinal stuff. Ended up in the bathroom most of the night. I went to a breast cancer support group today. There was a man there with breast cancer, which really surprised me. I know men get breast cancer, but until now I’ve never heard of an actual case. Myra Johnston, director of the Buddy Kemp Caring House told me that WBTV is planning to profile someone with breast cancer and she thought of me. That’s in two weeks. I’m sure I’d want to do it because the more people I tell about breast cancer awareness, especially my age, the better. I’m still taking the nausea meds.

Tuesday, January 11, 2000

Today I started getting the swollen glands around my neck again. My neck and shoulders hurt to the touch, but not on the inside. Swallowing doesn’t bother me. Still some nausea, but nothing like the cramping and diarrhea I had last time. Had to take an Immodium yesterday.

January 8, 2000

Email to IBC list member

Hi,

I just received my second round of Adriamycin and Taxotere yesterday. The doctor was very impressed. The redness was almost gone and he said the tumor felt softer and smaller than when I was first diagnosed. They did find out on the pathology report that I am a strong candidate for Herceptin and for tamoxifen when this is all over. I am convinced that by trying to have a positive attitude every day (even if I have to force myself sometimes!) and having lots of people praying for me is really helping. I only gave myself a couple of days to cry and say why me. I have been such an advocate for breastfeeding and have been a volunteer breastfeeding counselor for 3 years and was nursing my second baby at the time of diagnosis last month. Life sometimes throws you quite a curve. So my outlook is now I will be a breastfeeding advocate and a breast cancer advocate. I gave a small talk yesterday at my church telling people my age (early 30's) to do their BSE's (breast self exams) and also since most of them are stay at home moms, to make sure they have adequate life insurance coverage—which we did not and had to pay a very high premium to get me covered.

So, I believe my life will be dedicated to advocacy for women in many ways. And I consider my self to be a lucky person.

My own experience with side effects from round 1 of chemo was 8 days of H.E. double hockey sticks. I had lots of severe stomach cramping and diarrhea which the doctor says may have been a stomach bug along with the chemo. He is not expecting me to have the same bad side effects this time, but has loaded me up with meds just in case.

Thanks for writing; it is good to talk to someone else who is going through the same thing. None of my support groups, doctors, etc. can hook me up with someone in my city who has gone through IBC. It really must be rare!

Take care,
Debbie

Friday, January 7, 2000

I went to the doctor today. He was pleased with my progress. The redness on my breast is practically gone. He also feels that the lump is smaller and softer. Very good signs!!!! The only bad thing was that my blood pressure was up. Dr. Chapman decided to put me on a beta blocker to get my blood pressure down. I’ll have to read more about that. I was very nervous all morning before going for the chemo. They say that’s normal, and I should take one of my anti-anxiety drugs before going next time. The chemo was basically painless and I dozed a lot. Brant was crawling out of his skin because we were there for a total of 5 hours for lab work, doctor visit and chemo. We went home and I crawled into bed around 5:30 and heard my parents pick up the kids but I was too out of it to do anything. I woke at 2:15 and saw the monitor next to my bed. I was wondering how Brant was sleeping in Haley’s room with both kids. So, I went in there and realized that the kids were at my parents’ house and the monitor was on so he could hear me! He gave me some antinausea medicine and I went back to bed until 8:30 this morning. So far, so good. I’m tired and a bit jittery. I guess because I know the worst is yet to come. But if last time is any indication, I won’t be sick until tomorrow morning. I don’t care because the chemo is WORKING!!! All of those people praying for me is really working! I love my life! God is awesome!

Wednesday, January 5, 2000

Boy, wasn’t that MUGA scan fun. First, they started an IV. Then the nurse withdrew some of my blood and put some magnetic tracers in my blood. About 25 minutes later, she put the blood back into my arm. Then I sat in this machine for 1 ½ hours while they took pictures of my heart. There is a real flu epidemic going on in Charlotte, so I am trying to be very careful with the handwashing, etc.

Tuesday, January 4, 2000

Yesterday, Vickie buzzed my hair down as much as she could, but there was some rough stubble left all over my head. Very uncomfortable. When I put the wig on, it was all I could do to keep from jumping out of my skin. Last night, Monday night, Haley had a fever. We gave her Motrin and it went down. Same thing today and tonight. Brant’s in with her right now. She has a fever of about 103 degrees. I feel so sorry for her. She’s crying. I made the mistake of telling her she wouldn’t be able to go to school tomorrow and they’ve already been out for over two weeks for the holiday break. I want to hold her so bad and smooth her hair, and kiss her forehead and tell her that everything’s going to be okay, and I can’t because I can’t get that close to her with her high fever. It is so unfair. It is really breaking my heart.

Tomorrow I am to go to Mercy Hospital for a MUGA scan which is some kind of scan of my heart. I’m going to have to ask Mom to stay home from work and watch the kids for me. This will be an all morning kind of thing and I can’t bring them with me. Brant has already taken off so much time from work, I don’t see how I could possibly ask him to take off more time. We really need his income, so I need him to go to work. I may really need him to stay home if I get more fatigued as they say I will as the chemo goes on.

Sunday, January 2, 2000

My hair is really shedding. Brant cut off most of my hair this morning. I now have a buzz cut. Some is cut closer than other areas. I look like an accident victim. I cried a bit yesterday, but today I can laugh. It really helps me to think that the medicine is working, that’s why I’m losing my hair. I have Brant to thank for giving me that way of thinking. I am truly lucky to have him for a husband. He really takes great care of me. I’m supposed to meet with Vickie tomorrow and have her shave my head. Brant tried to shave it, but it is cut too long for a straight razor to work.

Saturday, January 1, 2000

Did the Y2K bug get us? Nope. All that hype for nothing. Brant & I went out last night with my brother and sister-in-law for New Year's Eve dinner. Then we went back to their house where Mom & Dad were watching all four kids. Then, we all switched into our jammies for a New Year's Eve celebration. All the kids stayed up. This is a big celebration!

When I was growing up, I always wondered what I would be like in the year 2000. I figured out I'd be 34, but had no idea I'd be fighting for my life. In a way, it's depressing.

Treatment wise, everything has gone just fine this past week. I’ve felt like myself since Tuesday. Back to spending time with the kids and enjoying myself. This morning I woke up, ran my fingers through my hair and got a wad of hair out!!! My scalp hurts like I’ve had a ponytail in for too long. No one told me my scalp was going to hurt!!!! I called Vickie, my hairdresser, and left her a message. I’m ready to cut off my hair now.

Tuesday, December 28, 1999

I went to see Dr. Chapman (oncologist)today. He examined me and we decided that the symptoms I’ve been having: severe stomach cramps and diarrhea are due to a stomach bug. The only way to know for sure is after my next chemo treatment. I hope he’s right!

Monday, December 27, 1999

Overnight was awful. I had insomnia and didn’t get to sleep until 4:45am. Brant brought Christopher in at 6:30 and we were up for the day. Had at least 8 bouts of diarrhea this morning. Getting really tired of all this. I took Immodium and Brant had me take a nausea pill and I was feeling out of it for most of the day. My mom took off today and we took Christopher with us while I had blood work done at the doctor's office. My sis-in-law Becky watched Haley most of the morning. Mom brought me home and I took a nap. The oncologist called to discuss our concerns with us and we made an appointment to see him tomorrow. He doesn’t feel that the GI problems I’ve been having are associated with the chemo, and he wants to see if there are tests that can be run to help determine the cause. I also finally have a cold. Runny nose, little sore throat but no fever. Dr. asked me to take my temp a couple of times before tomorrow, but I don’t feel that I have a fever.

Saturday, December 25, 1999

I was able to sit up and participate in the gift-giving. I took a couple of naps and laid down a few times, but all in all it was a very enjoyable day. I had a Christmas dinner and everything. That’s where it all started going downhill again. I surmised that the medicine given to smooth my stomach lining also smoothed my digestive tract and I had severe diarrhea again. I felt like my insides were going to come out.

Friday, December 24, 1999 Christmas Eve

Today was the worst day yet. Stomach pains had me flat out in the bed. Called the doctor Friday afternoon before we went to my mom’s for Christmas Eve. Brant talked to a nurse and a doctor two times. Friday Morning, the doctor prescribed another nausea medicine and Friday evening, he prescribed a medicine to smooth the lining of my stomach that you use sub-lingually. This seemed to really help with the cramps. However, it was too late for me to enjoy the kids on Santa’s lap. I spent most of the time laying in a guest room bed while the festivities were going on downstairs. I was so out of it, that I didn’t even care! I had no idea what Santa brought the kids and no idea what foods they served, etc. Brant was really great this night. He kept waking me on a regular schedule to give me meds and they seemed to work. By Christmas morning, I was upright again.

Thursday, December 23, 1999

More stomach pain and diarrhea, but bearable.

Wednesday, December 22, 1999

I threw up again. Worst day I’d had since Sunday. Lots of nausea and diarrhea. Got another prescription for the nausea. Really regular stomach pains above the belly button. Nurse advises bland diet which we’ve basically been following, but follow more faithfully. I’ve had no alcohol or Diet Coke since chemo began.

Tuesday, December 21, 1999

I was determined to feel better, and I did for a while. It was the best day I’d had in a while. Brant & I went out to El Valle and had shrimp quesadillas to celebrate and finish up some last minute Christmas shopping. By the time we got home, my stomach was hurting and I had diarrhea. Maybe should have skipped the Mexican, hmmm?

Monday, December 20, 1999

Still felt bad, more meds, oohhhhhhhh.

Sunday, December 19, 1999

I will try to recall the events of these next few days, otherwise known as “Hell Week”.

Sunday, December 19, I threw up then we went to church to see Haley as an angel in the Christmas Nativity. I felt really out of it. Went home and went to bed. Lots of nausea. Took lots of meds round the clock for the nausea.

Friday, December 17, 1999 Chemo Day

Journal Entry

I nursed Christopher any and every time he asked for “nah nah” yesterday. Nursed him to sleep last night, and darned if he didn’t sleep through the night until 6:15, but I got to nurse him then. We then set about getting Haley ready for school and her Christmas pageant. Brant took Haley to school and I had some quiet time with Christopher. His weaning went this way:

About 9:45am, I was sitting on the sofa and he came up to me and said "nah nah". I smiled and said, "Do you want to snuggle? Okay." So I took a pillow off of the sofa and laid it on my lap and put Christopher on his side. I pulled up my shirt and offered him my left breast. He eagerly latched on and I watched his eyes roll back in his head as only breastmilk can do to a baby. What a wonderful experience watching this and knowing that it is my love, commitment and breastmilk that gives us such a close and loving relationship. As he settles down in to his familiar nursing pattern, he kicks me a bit as he quiets down. Then, he begins exploring my face with his free hand, fingers exploring my nose, lips and teeth. Then, I take that sweet little chubby hand and kiss it. I hold it to my mouth for a couple of seconds before he pulls it away.

I am trying really hard not to cry and just to enjoy this moment. As he continues to nurse and get sleepier, he puts his arm across his eyes I guess to shut out the world. I know then it won’t be long until he is completely asleep. I don’t want this to end. This will be the last time ever and I want to imprint every movement, every nuance on my mind forever. I’m crying now as I write this, but at the time I was savoring my last experience with Christopher. Finally, he falls off the breast and I keep him there next to me. I watch his phantom flutter sucks until they, too, go away. I tuck my breast back in my shirt and rub his head ever so softly. I never want this moment to end. I have always been able to calm him down by taking my index finger and placing it at the bridge of his nose and going up over his head. Then I rub his cheek. I thank him for this time together and promise that we will find other ways to snuggle and be close. Mommy’s milk just won’t be the way anymore. We’re off to a new phase of our mother-son relationship.

I wake him up so we can go to Haley’s Christmas pageant at church and then we come home. About five minutes before my in-laws are to come over and watch the kids so I can go get my first chemo treatment, I tried to get Christopher to latch on one more time. He nurses for a couple of seconds, pops off and goes after Christmas paper and bows that have been strewn about the floor by big sis Haley. I smile to myself saying that this was the way to do it. We will both be entering a new phase of our lives now.

I am so thankful to God for giving me this wonderful family and this extraordinary opportunity to learn what it is to mother through breastfeeding. If I had to do it all over again, I wouldn’t change a thing. Not even all the trials I went through just to get both of my kids nursing. I think those trials make me appreciate all the more what a special gift I have been given.

Brant takes me to the clinic and as the nurse prepares to insert the IV and fill me with chemo drugs, I tell her that I am still a breastfeeding mother until the time she puts those meds into my veins. I have no regrets, and now we enter this new phase of life.

The chemo treatment went fine. I am on Adriamycin and Taxotere. The needle hurt as it went in because Sharon the chemo nurse had to wiggle it around to find the best place. One of the meds stung as it went in, otherwise all was uneventful. Had to unhook and go pee, then all was okay again. Left feeling kind of woozy. Only slightly nauseous last night and today. Just a bit tired. I should be sleeping but I have too many thoughts running through my head.

Wednesday, December 15, 1999

Journal Entry

On Monday, December 13, I went in for a routine core biopsy to see if my tumor has the requisite estrogen receptors for hormone therapy after my treatment. My mom went with me. They told us that she could not stay for the procedure, she had to wait in the waiting room. The doctor tried four times to do the core biopsy, but he said he didn’t get the tissue sample he needed. The needle kept bouncing off of my tumor. Therefore, he did an excisional biopsy. I had my arm up over my head the whole time. Nothing but local anesthetic. He had to use two bottles of Lidocaine to numb up the area. I was shaking by the time he was finished. Mom said it took a total of 50 minutes. I was left with a 3-inch long scar under my right breast, but he got the biopsy he needed, and he also did a skin biopsy. I left that office pretty shaken up. They had the nerve to make me pay a $10 copay on my way out.

Mom dropped off my prescription for pain relief. Brant was to pick it up later. I got into bed between 7 and 8 and Brant came home from the store and gave me a small pill, which I took at 8pm. By 12:15, I was in a lot of pain. I went to look at the bottle of pain reliever, and it was Parlodel, a milk dry-up medicine that the nurse had called in for me a few days prior! I woke Brant up and asked where my pain medicine was, and he said they only gave him the one prescription. I took ibuprofen (which you are not supposed to take since it can cause bleeding) and was up until at least 3:00. I went to the 24-hour drug store to get some nasal spray thinking that to ease my congestion would help me sleep.

On Tuesday morning, Brant went to the drugstore and they told him they didn’t have a prescription for me. I was like, “what do you mean? I was right with Mom when she dropped it off!!!” Brant went back to the drugstore and they finally “found” my prescription and gave it to him. Mercifully it did help with the pain, but it made me feel kind of drunk.

Tuesday afternoon, I had the multidisciplinary breast cancer clinic at a local hospital where I met with three doctors (a radiologist, oncologist, and surgeon) and a nutritionist as well as a breast cancer survivor. The doctors were to give me a second opinion which turned out to be the same as the first and they also agreed on the course of treatment.

I went home tired that evening. I took more Percocet for pain and to (hopefully) help me sleep. Took it twice that evening during the night. I still kept waking and got an awful headache at the back of my head.

When I woke Wednesday morning, I had a terrible headache. I asked Brant to watch Christopher and I went to the kitchen and took 800 mg ibuprofen and 60 mg Sudafed. Less than ½ hour later, I threw it all up. Felt terrible.

I pulled myself together, ate something and got Haley ready for school. Then Christopher and I took a long nap together in bed while he snuggled.

This evening, Mom and Dad gave us Hornets tickets. We took Haley and left Christopher with Mom and Dad. It was a nice time together. However, on the way home I was crying thinking about tomorrow being the last day I will ever get to nurse Christopher.

I know already that it’s going to be a rough day for me. It is so unfair that I have to wean my baby. He and I both enjoy it so much. I have decided that I am going to nurse him whenever he says the words “nah nah” tomorrow and a few times on Friday morning, too, before I go for my chemo.

I want Brant to take pictures and video even if I’m crying. I want to remember this special time in my (and Christopher’s) life before it’s stolen away from me by cancer. This sucks so much I can’t stand it. My heart is shattered. I know in my mind that I have to wean, but it’s my heart that’s breaking right now.

Sunday, December 12, 1999

Journal Entry

I nursed Christopher this morning around 4:15. I felt like my breasts were going to explode. They are heavy with milk.

Later this afternoon, I got my period. I haven’t had a period in over 2 years (November 1997) and now I get it. I’m sure it has to do with cutting way back on nursing.

Our nursing days are numbered and I am so sad, angry, pissed off, melancholy, and on and on about it. It’s not fair!!!!!!!!

Saturday, December 11, 1999

Journal Entry

Had a bone scan yesterday. They injected some radioactive material in me and scanned my bones for abnormalities. I happened to ask about nursing the baby and the tech said they usually say no breastfeeding for 48 hours but I should be okay after 24!!!!! No one prepared me for the fact that I wouldn’t be able to nurse Christopher! Brant had to get Christopher to sleep last night and this morning when Christopher woke at 6:15, Brant had to go get him. He likes to nurse when he wakes up and when he goes to sleep. Poor baby, he’s going to have to find different ways to do both of these things. God, I wish I didn’t have to do this to him.

December 10, 1999

Email to Ann

Ann,

Thank you so much for giving me the thought that I can nurse him up until my first chemo. I most certainly can, can't I? I'm on a comfortable schedule of nursing to go to sleep and nursing first thing in the morning. So, roughly 12 hours apart. The affected side is manageable.

As far as drying up my milk, I tried putting sage in some vegetable broth. Almost threw up. I just can't do it. Maybe Brant will make me some turkey dressing with lots of sage!!! I also read that parsley is a drying agent. Will get some peppermint tea. Sounds soothing anyway.

I went around with some cabbage leaves in my bra the first couple of days, but now the swelling from weaning is really not so bad. It's something that I take Motrin for if it bothers me and I haven't done that for a couple of days now.

I go for a bone scan this afternoon, a core biopsy on Monday and a 2nd opinion review on Tuesday, so we'll be busy the next few days!

Thanks for everything,
Debbie

December 9, 1999

Email to Ann

Ann,

We saw the oncologist yesterday, and he put us somewhat at ease. He has a nice, very soothing, and not condescending bedside manner. Seems we caught the cancer early. Many women delay seeing doctors when they find lumps (God only knows why????) but I did the right thing by going in right away. And although it is an aggressive form of cancer, he plans to treat me with "curative chemotherapy" and he seems confident that we have a good chance of shrinking the tumor down to almost nothing with aggressive chemo. He told me I could delay until after Christmas, but why would I do that when the sooner I start, the better off I'll be in the long run. Brant and I both felt better after meeting with him and finding out that the liver and chest scans were ok, no cancer. Feeling a little better about my prognosis, but scared to death of IVs. I start chemo next Friday, Dec. 17. Four rounds with three weeks between rounds. After that, assessment, probably surgery, then radiation.

Now that I know I have a week left, I wanted your opinion on weaning. Christopher very easily has gone down to twice a day, roughly 12 hours apart. I have not nursed on the affected breast since diagnosis, since it is full and nursing would be painful. Nursing twice a day on other breast. I know I should knock it down to once a day and then wean completely, but unsure as to when to do both. Any thoughts?

Deb

Wednesday, December 8, 1999

Journal Entry

I woke up crying today. It was as though I thought I would wake up and this would be just a bad dream, but reality hit. It didn’t help me that I went to the IBC website and started reading other women’s stories. I realized how serious this could be and got scared. I cried a bit this morning, then got better.

We met the medical oncologist. Gave him my history and showed him the mammograms. He came up with the same prognosis as the surgeon. However, out in the hall, Brant asked about my prognosis and the doctor told him we caught my cancer very early and have a great chance of curing it with chemotherapy. He described a protocol of aggressive chemotherapy (4 rounds with three weeks between them) probably followed by surgery and then radiation. He called it a curative chemotherapy with a combination of some powerful drugs. Said the tumor was small and perhaps could go away by the time chemo was completed.

I begin chemotherapy next Friday. Will have a core or excisional biopsy within the next 2 to 3 days with time to heal before chemo starts. This is to determine whether my cancer is hormone positive and whether I overexpress the HER/2 gene. I was glad to hear that I don’t have to wean Christopher like by tomorrow or something. I have a week and two days to complete it.

My right breast is still very full and when the doctor examined me, some milk came out. This made me start to cry realizing that I wouldn’t be able to nurse my baby for very much longer. Cried a few times this afternoon. I had an EKG which was normal and the Dr. said my liver scan and chest xray showed no signs of cancer. Whew.

We left feeling better about my prognosis and treatment. Still a long, long road to go, but with a light at the end of the tunnel now.

Brant calls his human resources department sometime early after my diagnosis and finds out he only has $3000 worth of life insurance on me. He feels really bad about the whole thing. I want to yell at him “how can you be so stupid not to have taken care of this before” but he’s feeling bad enough.

Tuesday, December 7, 1999

Journal Entry

Last night I was diagnosed with breast cancer. But, we have to start at the beginning.

Five weeks ago, I noticed a bunch of what seemed like blood vessels underneath my right areola. It made it difficult to nurse Christopher. They seemed to come together as a mass or lump underneath my nipple which made it difficult for Christopher to latch on and made nursing on that side somewhat painful since his teeth were digging in. I called my lactation consultant friend, Ann Calandro who agreed to see me that week. She looked at it and we decided that it might be a galactocele. She said to treat it with rest and plenty of nursing and if it wasn’t better by weekend, to see my doctor. By that Friday, it wasn’t better so I made an appointment to see the doctor the following Monday.

That Monday, my OB/GYN examined me and decided to treat me for mastitis with a course of doxacillin. Told me to come back in a week. The antibiotics had no effect.

After I started on the antibiotics, I was laying on my back in bed, checking my breasts when I noticed a pea or marble sized lump underneath my right breast. There was also an area of tissue below the small lump that I can only describe as a ridge on the underside of my breast where my breast meets my chest wall. The collection of blood vessels slowly went away, but the lump and the ridge stayed.

Went back the following week. It’s been going on for two weeks now. She didn’t examine me; instead told me she wanted to refer me to a surgeon. I had to go back to the Nalle Clinic to my primary care physician for a referral to a surgeon. They scheduled me for the following Monday, but I went out of town to Grayton Beach, Florida for Thanksgiving with my mother’s family. So, it was rescheduled for the following Wednesday.

(Before Florida and while I was there, I noticed that the redness was still there, and the ridge of tissue underneath the lump was growing rapidly. It was moving from the middle of my chest under my breast toward the outside of my breast.)

That Wednesday was December 1, and I had had my symptoms for 4 weeks and two days. At first, my left breast had a small reddish area on the top part of my breast. I put it down to a breast infection probably caused by my sleeping on my stomach. The redness did go away in that area, but surfaced in the right breast a week later. I’ve had the redness ever since. The doctor did a manual exam and decided on a needle biopsy. There was no local given, he just maneuvered the needle all around to get tissue samples from different parts of my lump. He schedules me for a mammogram on the following Monday. I have to wait five days for the biopsy results and the mammogram. Those were five long days.

Yesterday finally came. I went to the mammography center and the tech took several views of my breasts and then had the radiologist look at the films. Then, she came back for more detailed views. Took nine mammograms in all. Then the radiologist came in and showed me an area on my left breast, which showed some microcalcifications. He also showed me the area on my right breast where the lump/ridge was. Said it was curious that this lump would be in the same spot where my third nipple had been. Told me the doctor would probably have me rechecked at six months for the microcalcifications on the left breast and I would have to wait for the biopsy results on the right breast. I think he knew, but didn’t want to tell me.

So, Brant and I take the films to the surgeon's office and wait. The doctor comes in and examines me again. He tells me to get dressed and goes out presumably to look at the mammograms. The radiologist from the mammography center had called ahead with his findings. The surgeon comes back in and says did we hear the results of the biopsy. We said no. He said he should tell us that the biopsy was positive and contained malignant cells. In addition, the mammogram showed significant calcifications indicative of cancer. My mouth dropped open and I began to cry. This can’t be happening to me! I’m only 34 years old. Cancer? This was a bad dream and I would wake up soon, right? He went on and on about treatment, chemotherapy, testing, etc. but my mind was reeling. I had the sudden urge to go to the bathroom and I excused myself so that I could focus on what he was telling us without worrying about having to go to the bathroom. When I got back he was telling us about how they have great results with the treatments and how the last three women he has treated were all able to keep their breasts. I was in such shock.

He told me that I would have to stop breastfeeding and I got upset all over again. I mean, we just moved last week, the baby has been especially clingy and has been nursing around the clock again and now I have to abruptly wean? The doctor goes on to say that my baby is a year old and has received most of the benefits of breastfeeding by now. I didn’t have the inclination to argue with him. I’ve just been dealt two devastating blows. I have to end my nursing relationship with my last baby, and I have cancer and have to worry about seeing his next birthday.

The doctor has his nurse come in and talk to us about scheduling a second opinion from a hospital review board for the next Tuesday. A liver scan, a chest x-ray, a bone scan. This is all so surreal. The nurse says she’ll call us tomorrow and the doctor reiterates that I need to stop breastfeeding.

We leave a darkened office as it is now after hours. All I want is to go home and hold my babies. I cry much of the way home. I vacillate between crying and being angry that this is happening to me. I didn’t get to have the birth experiences I had hoped for, and now my weaning experience was being robbed from me too. It is so unfair. Since Christopher is my last baby, I envisioned him weaning himself when he was ready. Now it is a matter of days and he’s not yet 16 months old.

We get to my mother’s house where she has been keeping the kids. I pull her into the front room and coax my dad in there too and break the news. Mom takes it pretty hard. Dad seems okay, but he’s always been good at hiding his emotions. I call my brother who starts crying, too. I’m still in shock. A 34-year-old breastfeeding mother with no history of breast cancer suddenly has to deal with chemotherapy, surgery, and radiation. Mom and dad offer to keep the kids a little longer so we can get something to eat and make a few phone calls. I yelled out of the car window on the way home “This sucks!” “This is unfair!” “I’m not letting this cancer beat me!” The yelling made me feel a little better.

We then go about the task of notifying family and friends close to us. We grabbed a bite to eat at a Mexican restaurant nearby and go back home. I go to sleep with my children by my side around 9:30pm. By 11:30, it is just Christopher and I in the bed and I move him to the crib. Of course by that time I can’t sleep so I go on the Internet to find out what I can about inflammatory breast cancer.

Seems IBC is an aggressive, fast moving type of cancer that strikes only 1 – 2% of all breast cancer cases. The therapy is immediate chemotherapy followed by surgery and radiation. The American Cancer Society shows a 5-year survival rate of 40% for this type of cancer. Reality hits. I could die.

I’m not going to die of breast cancer. We are going to lick this and get on with our lives. I feel sorry for my kids because this will not be an easy time.

On Tuesday, we field a lot of phone calls from La Leche League Leaders, church friends, sorority sisters and family. It makes me feel so good to know how many people are concerned. I went for a liver scan and chest x-ray today. Tomorrow I meet the oncologist and Friday I go for a bone scan. The second opinion will be next Tuesday. More later.

December 6, 1999 - C day

Ann,

I will call you tomorrow, but my worst fears have been realized. I was diagnosed with breast cancer tonight. Needless to say, it was quite a shock. I'm only 34 years old and have no history of breast cancer in my family. The doctor called it inflammatory breast cancer. I'm scheduled for a battery of tests later this week and a second opinion next Tuesday, but it looks as though I will be weaning Christopher immediately and starting chemotherapy very soon. As I said, I will be calling you tomorrow for ideas on helping wean my baby.

Take care,
Debbie

December 1, 1999

Ann,

I wanted to update you on my health situation. I met with the surgeon today and he did a needle biopsy and is scheduling me for a diagnostic mammogram. Said he could not rule out either an infection or a malignancy. I have a ridge of nodules under my breast now. It has grown over the past four weeks. The top of my breast continues to be red. Doctor said that if it was a true infection, with my breast symptoms he would expect more systemic symptoms as well, but I continue to have good health otherwise (no fever, chills, etc.) He is concerned about malignancy. I meet with him again on Monday for the results of the biopsy and the mammogram (which I should have before Monday). He has also put me on another course of antibiotics to see if it is an infection that it will clear up.

I'll keep you up to date. Write back if you have any more info for me.

Take care,
Deb

November 19, 1999

Ann,

I thought I'd follow up and let you know how I'm doing. I still have the lump or cyst under my nipple. My OB/GYN treated me with a course of antibiotics which did not work, and frankly, I feel that I have become immune to all antibiotics. She then said that she will refer me to a surgeon, but, first I had to go back to my primary care MD and he gave me a referral to a surgeon within the practice. I go on December 1 after we get back from Florida and after we move that Monday. I'm not sure how I feel about going to some nameless surgeon, and a MAN to boot. I can only hope that he has experience with women who are nursing.

I'm sure I'll talk to you again soon!

Take care,
Deb

[NOTE: Spent Thanksgiving week in Florida with my extended family, and moved to a new house the next Monday, November 29.]

November 9, 1999

Ann,

I went to the doctor yesterday and she put me on dicloxicillin. With a follow-up in a week. If it's still there, she suggests ultrasound. I looked up dicloxicillin in Dr. Hale’s Medications and Mother’s Milk and it says it's used for treating mastitis. I'd never heard of it. I'll keep you posted. Sounds like my doctor is on the ball!

Deb

November 6, 1999

Hi Ann,

I am feeling better, but the lumps have collected into a larger mass under my nipple. Nursing is not quite as painful and it makes the clumps much softer. The other breast developed a big red spot Thursday afternoon and although it is slightly tender, it is not too painful. I have an appointment with my doctor Monday morning and I will let you know what she says.

Take care,
Debbie

November 4, 1999

Ann,

I was getting Christopher ready for bed and Brant gave him his amoxicillin (for a 2 week old sinus infection) when I suddenly realized that it might be a reaction to the antibiotic!!! My other breast became very tender throughout the day. It is red on one fourth of the breast and areola although not the nipple and doesn't have the clumps like the other one. But.... I had a severe allergic reaction to Keflex four years ago and have since stayed away from any penicillins and cephalosporins, but I'm realizing that on a few occasions at least, I have nursed Christopher right after giving him his penicillin!!!!! There has to be a connection. I am probably going to call the doctor and schedule an appointment for Monday (and plan to cancel it if I get better).

Thank you for seeing me today and helping me try to find out what my problem is. I will keep you updated. Thanks a million!!!!

Love,
Deb

November 3, 1999

Follow up note to Ann

Ann,

I'm not sure what to do, but I have temporary relief because I got Christopher to nurse in the football hold on that side and the pain was minimized. Also, in the shower this morning, I noticed that I have a lumpy armpit like when my milk first came in (on a lesser scale). So, I think I must be dealing with a blockage of some sort even though I don't see one particular lump or spot. I keep hoping it's going to get better, but it hasn't and I'm stumped! I may take you up on your offer to visit tomorrow. I will call you Thursday morning, if that's okay?

Thanks,
Debbie

November 2, 1999

Welcome to my journey through breast cancer! I have included emails and journal entries in chronological order because I think it is important to share the signs and symptoms of inflammatory breast cancer, and the emotions surrounding diagnosis and treatment.

Email to my friend, Ann, a lactation consultant

Ann,

I have a question for you that concerns me! Here goes: for the last few days, my right nipple has been sore when Christopher latches on, then subsides as he nurses. But, there appears to be little lumps all around the areola on that side only when I push on it (like when you're trying to determine whether you have flat nipples). It seems like little blood vessels that have come to the surface. It's very lumpy and when I do touch the areola, my nipple swells up much larger than the other side. It's as though the area is inflamed. Surface color is normal and I've looked for bruising and don't see any. It hurt so much last night that I cried out when he latched on, and I haven't tried again since then (too scared!). Do you think I should go see my OB/GYN? This is really puzzling me.

Thanks for listening and I look forward to hearing what you have to say!

Love,
Deb

Sunday, February 29, 2004 4:56 PM CST

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