History

Friday, December 12, 2008

Donations in Christy's honor can be made to Turning Point: The Center for Hope and Healing (see address below).
http://www.turningpointkc.org/
___________________________________________________

Christy's children's music CD, Mud Pies and Sweet Dreams can be purchased at:
Turning Point
8900 State Line
Suite 240
Shawnee Mission, KS
913-383-8700

Money for CDs purchased goes to Turning Point

They are also available at the gift shop at –
Children’s Mercy Hospital
2401 Gilham Rd.
Kansas City, MO 64108

Money for CDs purchased at the hospital goes to programs at Children’s Mercy

If you're from out of town or unable to get to any of these locations, just drop me an email - boda@toast.net

___________________________________________________

Also, a nursing scholarship has been set up in Christy's memory. Donations can be sent to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, 3200 Broadway, KCMO 64111. This is an endowed scholarship. All donations are tax deductible and 100 percent of the money will go directly to the students.

Thanks,
Boda

April 20, 2008

It’s hard to believe it’s been a year since Christy died. It’s hard for me to think about those days from last year – it was such a difficult time – so hard to see Christy fading away. I’m not sure Spring time will ever be a happy time for me again. The memories are just too sad.

When people ask me how I’m doing I usually say “okay”, although most of the time it feels like I’ll never be “okay” again. And at the same time, I know that whatever I’m feeling is “okay”.

I hope you’re doing better than “okay”. Thanks for coming back here – enjoy the warm weather – plant some flowers for Christy – and for yourself.

__________________________________________________

When considering charitable donations, please remember the nursing scholarship set up in Christy's memory. Donations can be sent to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, 3200 Broadway, KCMO 64111. This is an endowed scholarship. All donations are tax deductible and 100 percent of the money will go directly to the students.
___________________________________________________

Donations can also be made to Turning Point in Christy's honor (see address below).
___________________________________________________

Christy's Mud Pies and Sweet Dreams CDs can be purchased at:
Turning Point
8900 State Line
Suite 240
Shawnee Mission, KS
913-383-8700
And at-
Darling Yoga
11711 College Blvd
Overland Park, KS 66211
Located at the southeast corner of College and Quivira
(913)498-1144
Money for CDs purchased at these two locations goes to Turning Point

They are also available at the gift shop at –
Children’s Mercy Hospital
2401 Gilham Rd.
Kansas City, MO 64108
Money for CDs purchased at the hospital goes to programs at Children’s Mercy

If you're from out of town or unable to get to any of these locations, just drop me an email - boda@toast.net
Thanks,
Boda

Saturday, October 27, 2007 1:15 AM CDT

October 28th is this weekend. It will be 6 months since Christy died. It's been haunting me all week. Other months have passed without me being so preoccupied with the 28th. I don't always dwell on it, or get overly emotional. Maybe it's the change of seasons, and the memories of autumn trips, or the big full moon in the sky. Whatever it is - I can't seem to think of anything else. It’s been heavy on my mind all week. I’ve been restless – feeling “lost”. So I'll take a walk in the woods on Sunday – where we walked a year ago. Maybe I won’t find any answers – but maybe I’ll find some of last year’s happiness still lingering in the air there.

___________________________________________________

During gift-giving season think about giving donations to Christy's scholarship in someone's honor. Donations can be sent to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, 3200 Broadway, KCMO 64111. This is an endowed scholarship. All donations are tax deductible and 100 percent of the money will go directly to the students.
___________________________________________________

Christy's Mud Pies and Sweet Dreams CDs can be purchased at:
Turning Point
8900 State Line
Suite 240
Shawnee Mission, KS
913-383-8700
And at-
Darling Yoga
11711 College Blvd
Overland Park, KS 66211
Located at the southeast corner of College and Quivira
(913)498-1144
Money for CDs purchased at these two locations goes to Turning Point

They are also available at the gift shop at –
Children’s Mercy Hospital
2401 Gilham Rd.
Kansas City, MO 64108
Money for CDs purchased at the hospital goes to programs at Children’s Mercy

If you're from out of town or unable to get to any of these locations, just drop me an email - boda@toast.net
Thanks,
Boda

Monday, September 10, 2007 6:35 PM CDT

On my birthday, August 28th, Scott (Christy's brother) and I hiked to the top of Mt. Galena near Leadville, Colorado and released Christy's ashes into the wind. Some fell on the ground, some into the air. We imagine that some will make their way into a mountain stream, a lake, and beyond. Some may be picked up by the clouds. And some may remain there on the mountain top. It was a beautiful day for a hike and it's a beautiful place - one where Christy and I had hiked together 6 years ago.

Earlier that morning (at 3:00 a.m.) Scott and I watched the eclipse of the moon. It had been cloudy and raining when we went to bed - but the sky was clear for the eclipse. It was a birthday gift from Christy - and a magical experience complete with several falling stars.

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Thanks to everyone's generosity over $10,000 was raised for the Christy Simpson Nursing Scholarship. The first scholarship was awarded this fall! The scholarship is now endowed and will continue from year to year. Keep it in mind. Future donations will enable us to award larger scholarships and more often.
Thank you all.
--------------------------------------------------------

I'll try to keep info here about Christy's CDs and the nursing scholarship, for those of you who are interested.

A nursing scholarship has been set up in Christy’s honor. Donations can be sent to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, 3200 Broadway, KCMO 64111. This is an annual/endowed scholarship. All donations are tax deductible and 100 percent of the money will go directly to the students.

Christy's CDs can be purchased at:
Turning Point
8900 State Line
Suite 240
Shawnee Mission, KS
913-383-8700

And at-
Darling Yoga
11711 College Blvd
Overland Park, KS 66211
Located at the southeast corner of College and Quivira
(913)498-1144

Money for CDs purchased at these two locations goes to Turning Point

They are also available at the gift shop at –
Children’s Mercy Hospital
2401 Gilham Rd.
Kansas City, MO 64108

Money for CDs purchased at the hospital goes to programs at Children’s Mercy

If you're from out of town or unable to get to any of these locations, just drop me an email - boda@toast.net

Thanks,
Boda

August 20, 2007

Thanks to everyone's generosity over $10,000 was raised for the Christy Simpson Nursing Scholarship. The first scholarship was awarded this fall! The scholarship is now endowed and will continue from year to year. Keep it in mind. Future donations will enable us to award larger scholarships and more often.
Thank you all.
------------------------------------

I'll try to keep info here about Christy's CDs and the nursing scholarship, for those of you who are interested.

A nursing scholarship has been set up in Christy’s honor. Donations can be sent to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, 3200 Broadway, KCMO 64111. This is an annual/endowed scholarship. All donations are tax deductible and 100 percent of the money will go directly to the students.

Christy's CDs can be purchased at:
Turning Point
8900 State Line
Suite 240
Shawnee Mission, KS
913-383-8700

And at-
Darling Yoga
11711 College Blvd
Overland Park, KS 66211
Located at the southeast corner of College and Quivira
(913)498-1144

Money for CDs purchased at these two locations goes to Turning Point

They are also available at the gift shop at –
Children’s Mercy Hospital
2401 Gilham Rd.
Kansas City, MO 64108

Money for CDs purchased at the hospital goes to programs at Children’s Mercy

If you're from out of town or unable to get to any of these locations, just drop me an email - boda@toast.net

Thanks,
Boda

Thursday, May 22, 2007

Christy's memorial service was beautiful. Thanks to everyone who participated, attended and helped out.

I've had questions about the scholarship and the music, so I thought I'd post answers here for everyone.

The proceeds from the sale of Christy's children's music CD, Mud Pies and Sweet Dreams go to Turning Point: The Center for Hope and Healing. If you're interested in one of the CDs, email me at boda@toast.net

The online pledge form to donate to Christy's scholarship fund is not working. If you've used it and nothing happened, you will need to contact them or send in your pledge by mail. Please note that even if the online pledge form "works", you would still have to follow up by mailing a check or calling in a credit card number to donate. See the bottom of the obituary for details on the scholarship.

Thanks all - love to you -
Boda
___________________

(Below is Christy's obituary, written by Lisa Lukaszewski)

Christy Simpson, a steadfast friend, talented musician, and patient gardener, savored her life for 50 years. She died peacefully in her home in Kansas City, Missouri on April 28, 2007.
Christy was born in Izmir, Turkey, on January 28th, 1957. She grew up in Tucson, Arizona and Salmon, Idaho. Christy’s love of nature, her musical talents, and her gifts for nurturing other people shaped her education and career paths. She graduated from the University of Idaho with a degree in zoology, and later from the University of Kansas School of Nursing. She lived her calling at the Children's Mercy Hospital pediatric intensive care unit, where she worked for 18 years, serving as co-manager of the unit for 5 years. She also served as a nurse on two medical missions of the International Children’s Heart Foundation to Serbia and China.
Christy’s life was full of song. She expressed her joy in life as half of the folk duo, The Neon Girls, until her singing partner, Joan Driskill, passed prematurely in 1998. Christy also recorded a collection of children's music which is enjoyed by “kids” of all ages.
Christy was diagnosed with cervical cancer in December 2002 and underwent numerous treatments and surgeries to prolong the life she loved so much. Christy did not want to be remembered only for the cancer, and nor was that how she lived. She continued to live life to the fullest. As she had always been, she continued to be a singing, traveling, folk-dancing, yoga-loving, laughing, insightful observer of the world. In the past few months, she celebrated two joyous milestones: her 50th birthday and her 20th anniversary with her partner, Boda. Quick to make friends and slow to lose them, Christy found immense joy in details that too many of us fail to notice—the unfolding of a flower, the grace of a hummingbird, the perfect pitch of a musical note, and the bubbling of children’s laughter. When spending time with her, others could not help but appreciate those things as well as her considerable grace.
Christy enjoyed traveling. She went rock climbing in Maine, hiked the Grand Canyon, sailed among whales in Alaska, snorkeled in Hawaii and the Caribbean, and climbed the highest mountain in Colorado. As much as she enjoyed those things, Christy’s favorite place was her own backyard, in the company of her loved ones.
Christy will always be loved by her partner of 20 years, Brenda (Boda) Klenke; parents, Roy and Dorothy Simpson of Albuquerque, New Mexico; brother, Scott Simpson of Depoe Bay, Oregon; and sister, Linda Johnson of Prineville, Oregon. Her legacy of song and spirit is carried on by the many whose lives are better because they knew her.
A celebration of Christy's life was held at 9:00 a.m., Saturday, May 12th at All Soul's Unitarian Universalist Church, Kansas City, MO. In lieu of flowers, please make contributions to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, an annual/endowed scholarship set up in her honor. All donations are tax deductible and 100 percent of the money will go directly to the students. (MCC Foundation, 3200 Broadway, KCMO 64111).

Saturday, April 28, 2007 10:51 PM CDT

Christy passed away peacefully, on a beautiful spring day - Saturday, April 28th at 3:05 p.m.

I had been spending so much of my time over the last several weeks preparing for her death – sorting through things, mailing things to people that she wanted them to have, making sure things were “in order” – Today I decided to concentrate more on “living” and I went outside and filled the bird feeders, mowed the lawn, and planted flowers. Within minutes after I had come inside – she was gone.

See below for details on the memorial service.

If you are considering sending flowers or remembering Christy in some other way, please see the bottom of this page for information on a nursing scholarship which has been established in her name

Thanks all – love, Boda

Christy Simpson, a steadfast friend, talented musician, and patient gardener, savored her life for 50 years. She died peacefully in her home in Kansas City, Missouri on April 28, 2007.
Christy was born in Izmir, Turkey, and grew up in Tucson, Arizona and Salmon, Idaho. Christy’s love of nature, her musical talents, and her gifts for nurturing other people shaped her education and career paths. She graduated from the University of Idaho with a degree in zoology, and later from the University of Kansas School of Nursing. She lived her calling at the Children's Mercy Hospital pediatric intensive care unit, where she worked for 18 years, serving as co-manager of the unit for 5 years. She also served as a nurse on two medical missions of the International Children’s Heart Foundation to Serbia and China.
Christy’s life was full of song. She expressed her joy in life as half of the folk duo, The Neongirls, until her singing partner, Joan Driskill, passed prematurely in 1998. Christy also recorded a collection of children's music which is enjoyed by “kids” of all ages.
Christy was diagnosed with cervical cancer in December 2002 and underwent numerous treatments and surgeries to prolong the life she loved so much. Christy did not want to be remembered only for the cancer, and nor was that how she lived. She continued to live life to the fullest. As she had always been, she continued to be a singing, traveling, folk-dancing, yoga-loving, laughing, insightful observer of the world. In the past few months, she celebrated two joyous milestones: her 50th birthday and her 20th anniversary with her partner, Boda. Quick to make friends and slow to lose them, Christy found immense joy in details that too many of us fail to notice—the unfolding of a flower, the grace of a hummingbird, the perfect pitch of a musical note, and the bubbling of children’s laughter. When spending time with her, others could not help but appreciate those things as well as her considerable grace.
Christy enjoyed traveling. She went rock climbing in Maine, hiked the Grand Canyon, sailed among whales in Alaska, snorkeled in Hawaii and the Caribbean, and climbed the highest mountain in Colorado. As much as she enjoyed those things, Christy’s favorite place was her own backyard, in the company of her loved ones.
Christy will always be loved by her partner of 20 years, Brenda (Boda) Klenke; parents, Roy and Dorothy Simpson of Albuquerque, New Mexico; brother, Scott Simpson of Depoe Bay, Oregon; and sister, Linda Johnson of Prineville, Oregon. Her legacy of song and spirit is carried on by the many whose lives are better because they knew her.
A celebration of Christy's life will be held at 9:00 a.m., Saturday, May 12th at All Soul's Unitarian Universalist Church, Kansas City, MO. In lieu of flowers, please make contributions to the Metropolitan Community College Foundation - Christy Simpson Nursing Scholarship, an annual/endowed scholarship set up in her honor. All donations are tax deductible and 100 percent of the money will go directly to the students. (MCC Foundation, 3200 Broadway, KCMO 64111).

Wednesday, April 25, 2007 10:35 PM CDT

I don’t have a lot to say, but I thought I should update this site more than once a week, as I know there are a lot of people who want to know how Christy is doing.

In the last couple days she has become almost totally unresponsive. She appears to be sleeping most of the time, but she is nearly motionless. There is an occasional squirm or arm movement. I’m sure that she can hear us, but she is not really able to respond except with maybe a yes or no, or something we can’t understand.

We’re not exactly sure how or why she is hanging on. She just loves life that much, I guess. There is a theory that she is waiting until the 28th – because all of our significant dates are on the 28th. Her birthday – January 28th; my birthday – August 28th; and our anniversary – March 28th. I guess we'll see.

Thanks again for checking in –
Love,
Boda

Sunday, April 22, 2007 10:45 AM CDT

Hi all,
As I’ve mentioned here before – Christy is getting weaker every day. At this point I am amazed that she is still hanging on. But, this is Christy we’re talking about.

Last Sunday there was a definite change. Her eyes looked different – like she was seeing something different than what we saw. Maybe she is, and maybe that’s a good thing. She started to become somewhat incoherent and talked as if she were putting a voice to whatever dreams were going on inside her head. Sometimes when we asked what she was saying she would smile and say that it was just shit she was making up in her head. Other times it was frustrating for her because she felt she was asking questions that no one answered, or answering questions that hadn’t been asked. She still had some lucid moments, but it was a definite change in her behavior. Here a week later, she is not able to really speak at all. She mutters things and I wish I knew what she was saying. Again, it must be frustrating for her as well.

I moved Christy to the couch in the living room last Sunday. I needed to have her in a place where I could keep an eye on her. It wasn’t safe to leave her in the bedroom on her own. She needed help to get up and use the commode and it was also becoming very difficult for her to even reach for a glass of water. Now, a week later, those tasks are also impossible for her. She had a catheter put in Friday morning, because the struggle to get her up to use the commode was becoming too difficult. It also seemed to be painful for her at times. Thankfully, pain hasn’t been a big issue for Christy and I hope that continues to be the case. She complained for a couple days that her side hurt when she sat up, but that has been her most serious complaint of pain.

Now she just seems somewhat restless – unwilling to let go maybe. I don’t really know. I tell her to just close her eyes and rest. And I tell her she can go if she wants – I’ll be fine. But, she continues to hang in there. Sometimes it seems like she could stop breathing any minute, but I also know that she might go on for days.

I know I couldn’t have done this alone. Thankfully, I’ve had some relief and been able to get out for a few hours each day. Our nurse friends make sure of that. I’ve been able to get away nearly every day to do “normal” things: work in the yard, take a shower, get groceries or just take a nap in a real bed. I even bought a new lawn mower. I love it, and don’t know why I waited so long to get it. Now it seems weird to be happy about a lawn mower, when Christy is dying on the couch.

Thanks to everyone for your continued concern –
Love,
Boda

Saturday, April 14, 2007 11:07 AM CDT

Hi all - Thanks for checking in.

It's been a fairly quiet week here. Christy continues to get a little weaker with each passing day. She has been napping more and coughing less. She isn't in much pain - weakness seems to be a bigger issue. Today is the first day that she has chosen to stay in bed (as opposed to getting up and moving to the couch).

Again, please remember that Christy doesn’t have energy to spare. She hasn't been returning emails or even talking on the phone. She does appreciate hearing from you, even if she hasn't been able to respond. If you feel a need to visit her, please call first to see if she is up to having visitors and keep your visit very, very short. Also know that she may not participate in the conversation or have much interaction.

Thanks everyone for your continued good thoughts on her behalf.

Boda

P.S. Ponder, my cat who has often been featured in photos on this website, was put to sleep this morning. He was a little wobbly last night and by this morning he had lost all use of his back legs. It was a quick and sad goodbye to a cat who was well loved - and loved us - for 18 years. I miss him. (See photo page)

Sunday, April 8, 2007 9:17 PM CDT

Well, it’s been a week since Christy put an update here. Last weekend she was still getting around a little – in a wheelchair for any distance – but getting around.

Monday was her last radiation treatment. They have finished treatments on the superficial tumors on her head. Other superficial tumors have popped up on her sides, along her ribs. The tumor above her hip, which they were treating, isn’t close to anything critical and she has opted to stop treatment on it. It has become too much of an expenditure of energy to get to the treatments, when they don’t seem to have any big payoff.

Christy has gotten significantly weaker since last weekend. By Wednesday she was barely eating anything and it was an effort to stand up long enough to brush her teeth. She still is dealing with the congestion in her chest. She is nearly constantly coughing up mucous and sometimes retching to clear her airways. She’s on oxygen 24 hours a day and does breathing treatments to help open up her airways. She is taking more narcotics to help with her breathing and to feel more comfortable.

She will probably not continue the vitamin C treatments either. It did seem to help her skin on her hands feel better (from the Doxil side effects) and helped some with the lingering sinus problems from a cold, but so many more tumors have popped up and the tumors that had shrunk from radiation seemed to stop shrinking, that the vitamin C seemed to be helping the cancer cells too.

Each day she seems weaker and she feels that she doesn’t have much more time in this world – it might be weeks, or days – we don’t know. Now that the end seems more imminent, we know that there may be people who want to come by to visit. Christy doesn’t have much energy to spare. Simple conversation takes a big effort on her part. She hasn’t had the energy for long phone conversations or to answer emails. If you want to come by, please call first and keep your visit very short. She doesn’t want to be inundated with visitors or have people hovering over her. Please know that this is a very private and sacred time for us.

Thanks everyone for your continued good thoughts and prayers on her behalf. We still can’t believe the huge outpouring of support at her 50th birthday party. It really was so good for Christy to see everyone who loved and cared for her. It made her feel that she really did get something right in this lifetime.

Happy Easter! Take a look at the photos of flowers here, because after a few nights of sub-freezing temperatures, the ones outside are looking pretty unhappy.
Boda

Sunday, April 1, 2007 0:28 AM CDT

Hi, and thanks for checking in. I can’t believe it’s been over a week since Boda posted the last update. Every day is it’s own little adventure, and time just marches on.

I am growing increasingly weak and short of breath with even the simplest activity. I still get around the house okay and feed my birds (slowly, very slowly, with lots of rests along the way). I use oxygen when I think it will help. I’ve got all sorts of medical gizmos and machines to play with. Boda and I just figured out tonight that we’d been leaving one small piece off of the albuterol nebulizer (for breathing treatments). Putting it together right made a huge difference – maybe it really will make me feel better now! (Yes, we feel a little foolish…)

My biggest challenge seems to be the congestion in my chest. Dr. Chapman and I believe the lung tumors themselves are producing this huge amount of mucous with occasional blood. I use a handheld inhaler, the albuterol nebulizer and take a fair amount of guafenesin (an expectorant better known as Mucinex) to help loosen things up in my chest so I can cough them out. If I don’t do everything I can to loosen it up and keep it moving, my airways start to fill up, and at some point my body does a little Heimlich maneuver on itself, and I cough so hard that I retch and throw up. It’s very unpleasant, but it does seem to help clear my airways. It’s also quite exhausting.

I have discovered more superficial tumors, most on my head and neck, but also one on my shoulder and a grape-sized lump above my right hipbone. These are all being treated with radiation. It is shrinking the tumors, but I know I’m just buying time – still hopeful about new drug trials.

I started getting high dose IV vitamin C again – this time at home. I’ve had two infusions, and I can’t really tell a difference yet. I’m hoping that it will at least boost my immune system and help me feel better. Time will tell, I guess.

My bigger problem lately has been eating. It’s just such hard work, and I hate it when I eat and then puke. I’ve lost a lot of weight and one might say that I’m a bit gaunt. I need to work harder on eating little bits of things all day long.

The spring here is incredible – magnolias and Bradford pear trees blooming – blossoms already falling to make soft pink and white carpets beneath their branches. Dogwoods and redbud trees are starting to bloom now. Forsythia bushes are covered in yellow blossoms. The crocuses and daffodils are beginning to fade as the tulips and hyacinths show off their bright blossoms. Lawns are green – Boda is mowing about every three days – our lawn is totally out of control. Our new rain barrel is already full – we need a back up tank for the overflow. The birds are crazy and the squirrels are playful and greedy. I love the spring!!

Boda and I celebrated our 20th anniversary this last Wednesday. It was low key, but quite wonderful. It’s been a great 20 years!!

So, I guess that’s about it for me. I hope all is well in your world.

I send much love.

Christy

Wednesday, March 21, 2007 0:28 AM CDT

It’s a lovely, foggy Spring evening. Okay, it’s nearly midnight, but that’s evening to me.

We’re doing okay here. Christy is dealing with worsening congestion and shortness of breath. Sometimes she barely has the wind-power to talk. She can still get out and about, but she doesn’t drive herself. We’ve resorted to using the handicapped parking spaces and if we’re going to be in a store for very long, she drives an electric shopping cart or I push her in a wheelchair. She loves driving the carts, but they seem to be made for very large people, and since she’s just a little thing now it’s quite a stretch to reach the controls. I like pushing her in a wheelchair because we’re likely to stick together. She can get away pretty fast on the cart. We’ve learned some interesting things on our excursions. Costco has the biggest wheelchairs - huge, double-wide models. And wheelchairs aren’t always available where you expect them to be. We went to the RV show last weekend and neither the convention hall people nor the people hosting the show had wheelchairs available. Christy would stay at the end of the aisle, while I ran up and down looking for RVs that we might be interested in. I think hospice may be getting her a wheelchair soon.

It takes Christy an hour or two to get going in the morning. She has to cough and clear out what has collected in her lungs overnight, try to eat breakfast and take her medications. It does seem that she has found a better way to manage it all. Last week she had some coughing episodes which caused her to throw up. I think she’s got a better handle on when to take the medication and when to eat so that isn’t as likely to happen. We also got an electric massager that we run up and down her back and that seems to help break up the stuff in her lungs and make it easier for her to breathe. She also has been doing albuterol breathing treatments a few times a day.

Last Thursday she found yet another lump on her head. That caused a bit of an anxiety attack which brought on more breathing problems, but after a phone call to hospice and more drugs, things were under control. The radiation has caused the bumps on her head to shrink somewhat, and they started treatments on the new bump yesterday.

I’m on a leave of absence from work so I’m around almost all of the time. Sometimes it’s all pretty overwhelming and I just want to stay in bed. It’s hard to see Christy feeling bad and getting worse. And sometimes it’s just a confusing process for both of us. In the same day Christy may be planning her memorial service in the morning, and in the afternoon she’s doing research on new, hopeful treatments. That was the case today. May your days have fewer contradictions –
Take care,
Boda

P.S. It just seems like I have so much I still want to do. Dying isn’t really on the top of my list right now. Thanks to everyone who continues to support and believe in all possibilities. Much love, Christy

Tuesday, March 13, 2007 11:09 PM CDT

Well, Christy has been meaning to update this website but hasn’t gotten around to it. Today she told me that I could do it if I wanted, so I’ll give it a try.

We took a trip to Albuquerque last weekend to visit with Christy’s parents and brother. We were there Friday through Monday. It was a good visit, but emotional as well. We also did some tourist-like stuff and drove the Turquoise Trail between Albuquerque and Santa Fe. It’s a two-lane highway that goes through some interesting small towns, with lots of shops and galleries. One of the towns is Madrid. It’s the town where the recent John Travolta movie, Hogs Wild, was filmed. There were some remnants of the movie set there. Christy had a great time shopping and buying gifts for friends. It was a beautiful day for a road trip.

The flight was kind of hard on Christy. Planes are pressurized to the equivalent of about 8,000 feet, so her already compromised lungs had to work all that much harder. She was worn out when we got there and rested most of Friday and Saturday. Kansas City Hospice had contacted hospice in Albuquerque and they were more than ready to help out. They were actually quite anxious to help. They said they hadn’t had anyone from out of town before. They came and checked things out with Christy and brought her some medications. (We’ve been pleased with the hospice care – in both cities.) Coming home Monday evening had the same effect. When we got home from the airport she was quite sick – coughing and heaving. She seemed to recover quickly, but had another such episode Wednesday night.

We decided that with these coughing, gagging episodes going on that she probably shouldn’t be home by herself, so we talked about me taking a leave of absence. It’s hard to find a balance. I don’t want to just be off work when she’s really sick. We want to have some good times together also. But the amount of leave I can take is limited and if she doesn’t survive the cancer, I’ll need to be here then. But, I went into work Thursday and requested a leave of absence. It was an emotional day for me and I cried a lot, but everyone was very understanding and supportive. My boss told me to “make some more memories”.

I started the leave this week. It seemed that once I decided to take off work, Christy was feeling quite good. Maybe it also had to do with the warm spring weather, but she felt pretty well over the weekend, and yesterday too. I was even wondering if I really should be taking a leave right now. Then this morning she had another coughing, gagging, puking episode and we were both glad I was here. It seems that maybe the tumors are secreting into her lungs and in the morning she spends quite a bit of time coughing. She takes a cough medicine that has an expectorant. The expectorant works by causing her lungs to secrete more and it loosens things up and she coughs it out. Sometimes it’s just too much or too thick and it becomes hard for her to breathe. She coughs pretty violently and sometimes throws up, either from the coughing or from the medicine upsetting her stomach. Anyway, it’s scary and somewhat unsettling for both of us. It seems to help if she lies down, and I pound on her back to loosen things up a bit.

Other than that, she’s getting along pretty well. Her hands and feet are still peeling from the chemo that she had 6 weeks ago. They don’t hurt anymore but they don’t look that great. She’s had a week of radiation treatments for her head bumps. Those treatments started the day after we got back from Albuquerque. I had to cut the hair around one of the bumps so that they could do the treatment. I was amazed when I saw how big and nasty looking it had become. It was the size of a small marble and it looked as if it might burst. I did leave some hair above it so that Christy can do a little “comb-over” to hide it. She’ll have 4 weeks of radiation on the two bumps, so we’re tied to the hospital again. Maybe when these treatments are done we can take a little road trip in the van. We’re hoping to go to the RV show this weekend!

We continue to make “preparations” for dying. It’s not that much fun – cremation planning, lawyer visits, banking stuff, etc. Hopefully we’ve just about finished that kind of thing and we can spend our days doing other things - like planting flowers, sitting on the new front stoop, and watching the world turn green. And even though we’re doing that planning, and Christy is in hospice care, she has a hopeful eye on a clinical trial that is on the horizon. You never know…

We hope you’re enjoying the change of seasons wherever you are –
Thanks for checking in –
Boda

Friday, February 23, 2007 9:06 PM CST

Hi, how are you?? (Just send me a little update through the invisible thread that holds us together – no need for anything more concrete unless you feel like it.)

I am doing a little better, I think. My hands and feet are so much better. It’s such a relief. Some of the skin has peeled off my hands, but my feet are just sort of healing up without the skin loss. My mouth is a lot better, and I’m starting to be able to eat more and different things again. The Doxil is finally finding it’s way out of my body. Thank god!!

Hospice is good. I like everyone I’ve met, and they are very responsive about doing what they say they will do. I am now on a long acting oxycodone (narcotic) around the clock, plus I take a little extra if I have break through pain. They sent me a “comfort kit”, which includes all kinds of medications for emergency pain or nausea or anxiety. It came Fed Ex, so there were narcotics sitting on my front porch for who-knows-how-long Wednesday afternoon. It’s just so weird. We are such fanatics in the hospital, worrying that someone might get into our narcotics, but they just ship it and let it sit on your porch through Hospice. This world we live in is just plain weird sometimes.

I met with my radiation oncologist this morning, and he told me he thinks he can irradiate the two new little lumps on my head and neck without really hurting any of the surrounding tissue, and because they are so superficial, he doesn’t think I’ll really have many side effects at all. So, after a quick visit to my parents in Albuquerque next weekend, I’ll come home and start 20 rounds of radiation. It’s palliative (not a cure), so I can stay in hospice even as I receive these treatments. I hope it shrinks the little devils. I really don’t like them at all. They don’t feel like friends.

I have been feeling OK for the most part, but I can tell I am sicker. I get tired and out of breath with very little activity. Today, I started coughing up just a little blood. I’m very very thin and don’t seem to be able to gain weight no matter how much I try to eat. I have intense and horrible coughing spells occasionally. It’s a little bit of a roller coaster. Sometimes I think I could live for months, and sometimes I wonder if I’ll be here next week – fairly unsettling.

I have been taking care of “things” – getting my finances in final order, cremation shopping, going through my things yet again, trying to make decisions about who I’d like to have what. Stuff like that. I remain very grateful for the years I’ve been given since I got this cancer, and I’m still open to a miracle, but feeling pretty realistic about the directions things are heading.

So, again, thank you so much for your love and support. And thank you for hanging with me all this time. It’s a great gift!

Take very good care. Sending much love,

Christy

Friday, February 16, 2007 10:19 PM CST

Hi, and thanks for checking in.

A week ago, I was miserable with side effects from the Doxil (chemotherapy) and worried about two new lumps I had found – one on the back of my neck and one on the back of my head.

I am still moderately miserable from the Doxil – my mouth sores are a little better, but they are still there and making it difficult to eat. My hands hurt a lot!! I slather on Biafine cream and vitamin E cream, and then wear white cotton gloves. Grasping anything hurts – even turning the door knob is painful. My feet are very raw now as well. I have three fairly large blisters on the ball of my left foot. I also slather the creams on my feet and then put gauze on the blisters and wrap my foot with a soft ace wrap. I have to hobble to get around. It sucks. The other sores are still there, but I just put cream on them a few times a day, and, mostly, they don’t bother me too much.

As for the lumps, it turns out that they are both cancer. I saw my neurosurgeon yesterday. She removed the rest of my giant scab, and then had pathology come and do fine needle aspirations on my lumps. They could see that it was cancer right away. I’ll find out the actual pathology sometime next week.

I wasn’t really surprised, but I really wanted to be wrong. The neurosurgeon told me she could remove the lump on the back of my neck without too much trouble – might have to remove some muscle as well. But the lump on my head is very similar to the one I had before that had ‘fingers’ extending from the mass itself. That lump required the removal of a large piece of my scalp, the rest of which then had to be stretched tightly to close everything up. She doesn’t feel I have enough scalp to do that again. This lump is very near the first incision, which is still healing. She doesn’t think surgery is a good option. She will do it if I request it. It is her opinion that I should do more systemic chemotherapy.

My oncologist really doesn’t have much more chemotherapy to offer me. I have tried eight different drugs – none have worked, and with each new drug presented, the tumor becomes more resistant. My doctor feels that the toxicity of Navelbine (the only other drug she has mentioned) would outweigh any possible benefit. She said, as she has said all along, I should seriously consider how I want to spend the time I have left. She will order more chemotherapy if I ask her to.

It seems that it is time for my body to rest. I will talk to the radiation oncologist next Friday about the possible benefits of radiating the new lumps, but even that would be considered palliative. So, I am entering into hospice care. Hospice care is palliative or “comfort” care. It focuses on improving the quality of life when you have advanced disease and choose to stop aggressive treatment. They focus on pain management and symptom control rather than a cure. It will provide a way for me to stay at home and be comfortable. They interface with Dr. Chapman and will come to me, instead of me having to go to Dr. Chapman when things come up. We will learn more about it tomorrow when we speak to the KC Hospice nurse. I can still see Dr. Chapman if I feel that I need to – she remains my doctor. And, I can change my mind if at some point, a therapy becomes available that offers me some new hope. A girl can always change her mind!!!

This has been a very long journey – I am ready for the next phase. Maybe it will be a very long one. It could be weeks or months – years might be pushing it, but you never know. Entering hospice care does not mean I am going to die imminently. It’s more a matter of switching gears. Hopefully, I will get over all these nasty side effects from the Doxil and feel good for a long time – time I want to spend with my family and friends.

Thanks so much for your continued support and love. Take very good care.

Gratefully,

Christy

Sunday, February 11, 2007 11:49 AM CST

In many ways, this has not been a good week for me. The side effects of the Doxil seem to be much worse and last much longer with this second dose. My mouth became so sore that I could barely talk or swallow, and I couldn’t do either without a great deal of pain – no matter how much magic mouthwash I used (magic mouthwash is lidocaine, benadryl and Maalox – to numb and protect your mouth and esophagus). I started to wonder if I could overdose on the magic mouthwash, but I didn’t really care.

Not only did I have horrible mouth sores and thrush in my mouth, I also had little sores developing all over my arms, hands, legs, chest and the back of my neck. The worst in terms of functioning are on my hands, especially in the webbed area between my thumb and index finger. All of them hurt when anything brushes over them. I also found them on my butt from where I sit on the seam of my underwear. I thought about not wearing underwear, but sometimes when I cough, I have a bit of stress incontinence, and there’s got to be something there to catch it!

By Wednesday afternoon, I was in tears and could barely function. So, I called my oncologist’s nurse and cried on the phone. (I hate it when I can’t control my crying.) She ordered some Nystatin swish-and-swallow for the thrush and told me to come in the next morning anytime – they would squeeze me in during clinics.

My parents called to see if I’d heard anything about the MRI I had on Monday evening, and all I could do was cry and tell them how miserable I felt. My dad suggested I take whatever pain meds I have and a sleeping pill and crawl in bed. It was the best advice of the day. I had a couple oxycodone left over from my surgery. I took them and a restoril, and for the first time in days, I got some relief. It’s amazing how pain can color your whole world.

Thursday, Boda took off work and went with me to see my oncologist and hopefully find out about the MRI results. My mouth was still hurting a lot, but I was more functional. It was very validating to see the look on my doctor’s face when she looked in mouth – it was obviously quite bad. She put me on another medication to get rid of the thrush and ordered more pain medication for me. When I asked about the MRI, she went and looked, and came back to say it’s “fine”. How could it be “fine” when I have two visible, palpable nodules on my head and neck? I just didn’t get it. Anyway, my oncologist wanted to see what my neurosurgeon planned regarding the nodules on my head before proceeding with a new chemo plan. I told her that I couldn’t do any more Doxil – I’m too miserable – it’s not how I want to live. The toxic effects far outweighed any possible benefit, especially if the nodules on my head and neck are my cancer. It means they grew right through the Doxil – it’s not working. She mentioned hospice care.

From there, I got a copy of my MRI report, so I could see for myself that it was “fine”. And, that’s pretty much what it said… So, I thought I’d try to catch my neurosurgeon during her clinics – just for a minute, just to see if there’s a plan. She was so busy, and her nurse so focused on his job, that I only got a few words with him. He reiterated that the MRI was “fine” and my doctor had no plans to biopsy or remove the nodules – that I should continue with systemic chemotherapy. By then, I was feeling pretty blown off and getting angry. I said something along the lines of: “So, because the MRI report says everything is fine, we’re just going to ignore the lumps we can see and feel? Pretend like they’re not there??” I wasn’t very nice. At that point, I realized we just needed to leave.

Boda brought me home, and I tried to eat some soup and jello. Then, I took pain meds and got in bed and tried to rest. A friend called, and after telling her my story, she asked if I had called the radiologist who read the MRI. I hadn’t even thought of it. What a good idea! So, I called and left a message with his secretary, not knowing if he’d return my call or not.

That evening, he did call me back. I told him I didn’t understand how I could have visible, palpable nodules on my head and neck and they not show up on an MRI. He re-looked at the scans, and when I described where the lumps are, he did, in fact, find them on the scans. They are both small, but definitely there. (It doesn’t give you a lot of faith in the medical system, does it?? Makes you wonder what else he might have missed.) He said he would amend the report and notify both my neurosurgeon and oncologist. While he couldn’t say what they are, he could recommend further investigation based on my history. He was quite apologetic. And, maybe the work “lawsuit” ran through his mind a few times – who knows?

Friday morning, my oncologist called me to tell me she had spoken with my neurosurgeon, and they would do a fine needle aspiration on the nodule on my head next week. My neurosurgeon’s nurse also called and told me it would either be Monday or Thursday – he’d let me know. I picked up a CD with the MRI scan on it and looked at it myself – I’m weird in that I like to do that. The lumps are very small and sort of hard to find.

By this time, I’m taking pain pills around the clock and feeling better. It’s still hard to eat, and now I’m getting sores on my feet, so it hurts a little to walk, but overall I’m better.

Saturday, Boda and I went to my friend, Evan’s birthday party at a place called “Jump it Up” (or something similar) where kids bounce and crawl and slide on these big inflated, enclosed arenas (for lack of a better word). It was great fun. I did two of the slides and one bouncy thing, but that was about all I could manage. Just watching the kids was joy enough! In the evening, we had dinner with friends and played Scrabble and a game called “Ugly Dolls” (which is just as much fun as it sounds!!). It was a late night, and Boda was worried I’m not getting enough rest, but it ended the week on a very bright note for me!

I am feeling much more at peace with the idea that I may not win the cancer game, but I’m still very open to all the possibilities. I’m working on getting IV vitamin C at home, and I’m making plans to see my family and maybe take a long trip with Boda.

Oxycodone is fine with me!!

So, if you got through this entire update, you are to be congratulated. It’s way too long. I’m really doing OK, and I thank you for checking in on me.

Take very good care.

I send much love,

Christy

Thursday, February 1, 2007 10:25 PM CST

I had the best 50th birthday ever!!!!!!! It lasted an entire week. It started on my brother’s birthday when we had beautiful, wet snow perfect for making a snowman. We made a delightful snow person (or “person of snow” if you prefer). It was very fun. Wednesday evening, we had a party at a local restaurant to celebrate both Scott’s and my birthday. I had a great time, and I figured that was my celebration. It was perfect. Then, Boda really topped it off with an incredible party at Turning Point – a SURPRISE party. And, it really was a surprise. Boda made a tiny slip the day before – made me a titch suspicious, but I never came close to imagining what she had planned. I was overwhelmed, astounded and amazed by the generosity and love that my friends went out of their – your – way to share with me. Friends and family came from very long distances to share a few hours with me. It was a beautiful cross section of the friends I’ve had and have in my life, and they were all together in one room. I still sit in amazement as I think of it. Part of my birthday gift was that donations be made to Turning Point. As of today, $8000 has been donated! Thank you! Thank you! Thank you!!

Monday and Tuesday, I was still basking in the glow of being “the queen”. Wednesday, I really overdid it – shoveled snow, took Evan to play for a couple hours, went out for lunch with a friend – anyway, I felt pretty bad yesterday evening, and then the party almost seemed unreal to me. I have a beautiful book and now photos to remind me of a wonderful birthday!! Thank you so much!!

I’m still trying to kick this cold I’ve had for nearly 5 weeks. I still get so congested and cough so hard I think I might puke. I have a few hours each day when I think maybe it’s letting go it’s hold, and then each evening I have some sort of relapse. I’m relying heavily on Benadryl and Restoril to sleep at night. I’m seriously contemplating restarting the IV vitamin C – not so much to get rid of the cancer, but just to boost my immune system. The doctor in integrative medicine at KU left a message today and suggested I might be able to do it at home. I’ll call back tomorrow and see what’s possible.

Today, I had appointments with both my neurosurgeon and my radiation oncologist. Both were supposed to be routine follow up appointments. But….Friday I found a small lump on the back of my neck, and then Monday, I found a hard, very tender lump up above my incision. I have another MRI of my head and neck scheduled for next Monday, and hopefully will know more by next Tuesday. My neurosurgeon trimmed some of my gnarly scab away and debrided some of the dead tissue. She said it looked “angry” and started me on 14 days worth of cephalexin (an antibiotic). I had Boda take a picture of the wound, and it’s nasty looking. (Don’t worry. I won’t put it on the website – too gross.)

I’m mostly tolerating the chemo OK. I get mouth sores and my tongue is starting to hurt and swell. I also have a bit of problem with swallowing, so eating isn’t that much fun lately. I have to work pretty hard to get the calories in, but I’m trying.

My brother flew back to Oregon on Tuesday – he is missed. We had some very good brother-sister talks about things that really matter. It was a really good visit.

So, thank you again. People said that I’ve touched many lives. Well, all of you have touched mine and given me sustenance to enjoy my life. You are all a blessing.

Take very good care.

I send much love,

Christy

Saturday, January 20, 2007 4:02 PM CST

Hi. It’s Saturday and it’s snowing pretty white flakes straight down from the sky. It’s quite lovely. It’s a day to enjoy being inside looking out.

Well, I have better news this week than last.

On Thursday, I had an MRI, and then I saw my neurosurgeon. I was a little worried about being able to lay flat on my back for the MRI, since lately, I’ve had so much nasal drainage that every time I lay down, it runs down my throat, and I start coughing uncontrollably. But, it went fine. And, better than that, there is no sign of any metastatic disease in my head. That is excellent!

A couple days before this appointment with the neurosurgeon, I found two more staples in my head – far to the left of my incision. I’m not really sure why they were there, but the resident removed them. Then the neurosurgeon “trimmed” my scab – around the edges and through some of the thickness. It’s still pretty big and has a hunk of hair hanging on for dear life. Scott took a couple pictures, so I could see it, but they’re way too icky to show anyone else!

Then, Friday, I went in to see my oncologist. As you may or may not know, I’ve had a horrible cold for the last three weeks. I was on an antibiotic for ten days, and I still have an incredible, uncontrollable cough, nasal congestion, and my lungs don’t sound very good. Last week, when I went in, they told me (based on chest x-rays) that it was not pneumonia but rather disease (cancer) progression. I felt bad enough that I believed it could be true, and in my lowest moments wondered if I really would live to see my 50th birthday (a week from tomorrow). Emotionally, I have not been so well lately. So, anyway, my oncologist said that she does NOT believe that it’s disease progression. She feels there’s no way they could make that call from x-rays since I don’t have recent x-rays to compare. She also felt my lung sounds could be from whatever virus I am still struggling with. So, she put me on a new nasal spray (Flonase – a steroid to help decrease swelling and inflammation in my sinuses) and on an inhaler (Combivent – a combination of albuterol and a steroid to open my airways and decrease any inflammation). I still cough uncontrollably at times, but my sinuses are less congested, and I don’t feel so “toxic”. More important, I am so relieved that my lay-it-on-the-line oncologist doesn’t think my tumors are growing out of control.

I am hoping to be well enough to get my next scheduled chemo this coming Thursday. This time they will give me Neulasta to keep my immune system (white blood cells) more intact.

I don’t remember if I mentioned it in my last update, but I also developed mouth sores and a swollen, sore tongue after the last chemo (in the middle of my cold-from-hell). It made eating very unappealing. They gave me “magic” mouthwash to numb and protect my mouth. They told me to swallow it since I probably also have sores down my esophagus. The sores in my mouth are much better, and my tongue is back to normal. I may still have sores in my esophagus though, as swallowing has been difficult lately. I’m still relying heavily on soft stuff that just slides down my throat. I’ve even started drinking Ensure, because I’m very near my model weight, and it’s just too thin.

So, overall, I am feeling better both physically and emotionally, and I’m looking forward to celebrating both my brother’s and my birthday. Scott’s birthday is tomorrow (I won’t tell you how old he is, but he’s five years older than me). Mine is a week from his – the big 5-0. Amazing!

I hope this finds you well and enjoying whatever weather you may be having wherever you are. I’d like to again express my gratitude for all your kindnesses and love and prayers. Take very good care.

Much love,

Christy

Friday, January 12, 2007 11:20 PM CST

Welcome to 2007 and yet another update.

As for my head… that tight feeling is pretty much gone. That’s a good thing. My head is still pretty sensitive on the crown, even just to touch the hairs, and it's numb right in back. I still have a rather large scab – I seem to grow them sturdy. I’m ready for it to be gone. Once it goes, I believe I will also lose the rest of the hair on the lower half of the back of my head. Right now, I have two large bald spots on either side of the incision. I did get Boda to cut my hair, and it looks much better (at least in the front – not much she could really do with the back).

As for my guts, they are behaving rather well the last few days. I don’t know why, and I don’t really care. It’s just a nice change. I have even eaten some ice cream lately without any ill effects. (Sometimes it’s the small things that can mean so much.)

The downside is that I’ve been really sick since just before New Years. It started with an earache, headache and drainage all on the right side of my head. Because it was only on the right side, I got worried that maybe something was wrong with my head related to the surgery. I even called my neurosurgeon. Boda finally convinced me that maybe it was a cold (where’s the drama in that???), so I started taking cold medicine. For a day, I felt a little better. Then, I seemed to relapse. My throat burned. My sinuses were raw. My head was so congested, I couldn’t breathe with my mouth shut. I developed an uncontrollable cough and wheezing. My head hurt. (Pathetic, huh?) Then, I started feeling like it was moving into my chest, so I called my oncologist and she prescribed an antibiotic just in case it was a secondary infection (not just a virus, but a bacteria taking advantage of my weakened condition). I started taking the antibiotic on Tuesday. Thursday, I was feeling worse. Boda convinced me to listen to my lungs with my stethoscope, and they sounded bad – like maybe I had pneumonia. So, Thursday, I went in to the Cancer Treatment Center at KU to be evaluated. They did chest x-rays and then a resident came in and listened to my lungs. She told me I probably did have pneumonia and would likely be admitted for IV antibiotics. I didn’t really want to be in the hospital, but I was prepared for that if it happened. Before they decided for sure, she needed to see my x-rays. An hour or so later, the nurse came in, handed me a prescription for cough syrup and told me I could go home. “What??? Isn’t the doctor going to come talk to me about this? I have a few questions.” So, she went and got the resident, who then told me that my x-rays didn’t show pneumonia. My lung symptoms are due to disease (cancer) progression, so I don’t need to be in the hospital. She agreed that I do have a head cold and should continue the antibiotics. She also said she’d set up an appointment for me to see my oncologist next week.

I know I shouldn’t be surprised by this news, but I really wasn’t prepared to hear it. I was really hoping for pneumonia. I was ready to deal with pneumonia. I also know that I have been incredibly lucky through all of this -- I haven’t had symptoms or been in pain from the cancer. It has allowed me to remain in a healthy sort of denial for a very long time. I don’t like being snapped out of it so suddenly.

On top of that (can you believe I’m not done yet?), I now have mouth sores and a swollen tongue from the chemo I received two weeks ago. I rinse my mouth and swallow a “magic” mouthwash that numbs my entire mouth so I can eat. I don’t need it for ice cream and Jello, making these popular choices these days.

So, for now, I’m trying to just be in the moment and get rid of this head cold. My brother, Scott, and I do Origami everyday – our dining room table is cluttered with folded birds, flowers, paper furniture, boxes, bowls, elephants, a dragon, etc. And there is a family of Origami pigs on top of our TV set. I feed the birds and squirrels and watch them flit and race about the back yard. We watch movies and stupid TV shows, and I continue to do my regular stuff (laundry, cleaning…stuff like that).

The pictures I’m putting on the website are courtesy of Boda’s sister, Arlene, who lives out in western Kansas (Montezuma to be exact). They had a big ice storm out there, and she took the picture of the pine needles in ice (at the top of this page). She also took the picture of the thermometer in ice with the windmills in the background – very cool. She sent me the picture of the cow, taken by someone she works with. It’s pretty amazing – thought you’d like to see it. I’m not sure what the third picture will be – maybe just sun glinting off the windmills out in Spearville at sunset. (I guess you can tell I’m pretty taken with the windmills…)

Well, I’ve rambled long enough. I’m pretty scared about the lung stuff – seems like dying is a bit more imminent – but I’m mostly doing OK.

Thanks for reading all this, and for all your caring thoughts and prayers.

Much love,

Christy

Friday, December 29, 2006 5:02 PM CST

Hi, and thanks for checking in. I hope you have had pleasant and safe holidays and are ready for 2007. Yikes!

I’m doing OK. My head is better. The someone-pulling-my-non-existent-ponytail- continuously has decreased significantly. It only feels that way occasionally now. The radiation burn on my neck and scalp is much better as well. The scab is still there – no big surprise. That puppy is going to take awhile to fall off, I think. The Friday before Christmas, my hair started coming out in clumps where my head had been irradiated, so I have a nice bald patch on the back of my head. I’m pretty sure all that’s holding in the rest of the hair on the back of my head is the scab. Time will tell. I’m thinking maybe I should get a haircut. I’m pretty tired of feeling like I need a lint roller with me at all times to pick up the falling hairs. (Of course, even with a hair cut, the hairs would still fall – they’d just be tiny short ones that might not be as noticeable.)

My bigger health issue right now seems to be my disruptive digestive system. I’ve lost nearly 15 pounds in the last 4 – 6 weeks, and not because I’m not eating, though eating is less and less pleasant as this goes on. I get horrible gut cramps that sometimes turn into nausea, and sometimes they last for hours. I haven’t thrown up (oh, except for once in the back of my throat, but I’m not sure that counts). But, boy, it really comes out the other end. Probably enough about that… I’ve been on antibiotics, and I’m really hoping that once I’m done with them, my guts will get back to normal. I certainly hope so.

I saw my neurologist last week, and she was very happy with how things look. I will have another head MRI and meet with her again on January 18th.

I also saw my oncologist last week, and then had CT scans of my chest, abdomen and pelvis. Considering my weight loss and GI problems, she wanted to make sure there wasn’t something else going on in my abdomen or pelvis. She also did a pelvic exam (my first in a couple of years). I was afraid it would really hurt, but it was OK, and she didn’t find anything. The scans showed increased size of my lung tumors, but no other spread. So, bad news/good news.

I started a new chemo drug yesterday – it’s a red-orange color and watching it being pumped into your body is a little freaky. The drug’s name is Doxil -- a gentler, kinder form of Adriamycin (for those of you who are familiar with that drug). One of the toxic effects can be to the heart, so last week I also had a cardiac ultrasound done. It entails having a probe with a lot of goo on it placed in various locations on your chest to check heart function. Normally, I think of it as a simple painless procedure. But, the tech pressed the probe so hard into my ribs that I have a bruise! So much for painless… Anyway, when they started the Doxil, I did have a rather sudden reaction including dizziness and blurred vision. They stopped the infusion for a while, and when I felt better, restarted it at a slower rate, and it went OK. My head always felt fuzzy, but that cleared up after the infusion was over.

So far, I’m feeling OK. I didn’t sleep very well last night, but I never do after I get one of the medications (Decadron) before the chemotherapy. I was awake at 3 am, and finally got up around 5:30 and did some meditation, tai chi and yoga. It was actually very nice – candles, soft music, my little table fountain running. But, now I’m tired and ready for a nap.

Our trip out to western Kansas was good. We took lots of pictures of the windmill farm out there (which provides electricity for Kansas City), and on the way home, we saw a field just full of geese. It was nice to spend some time with the Klenke family.

So, with that, I wish you a good New Years celebration. Whatever you decide to do, be safe. Take care. See you in 2007.

Much love,

Christy

Wednesday, December 20, 2006 7:58 PM CST

Welcome and thanks for checking in.

I finished my radiation treatments yesterday. I’ll put a couple photos of the radiation mask and what it looked like in the treatment room. It’s good that I’ve spent some time learning to meditate and breathe for calming. I can see how some people would need sedation to have that thing placed over their face and then bolted to a table. Luckily, once it’s on, the treatment only takes about 2 or 3 minutes. But, I’m all done with that!

My head still hurts most of the time – like someone is pulling my hair in the back and won’t let go. It gets old. I think it sort of wears on me. I also still have what feels like a giant scab in my hair, and it’s starting to annoy me on a more regular basis. I’m ready for it to be gone, but I don’t think it’s going to be that easy… And, lastly, I have a bit of radiation burn to the skin on the back of my neck and head. Except for all of that, I’m doing pretty well with the recovery from the surgery on my head.

I see my neurosurgeon and oncologist tomorrow morning to see what’s next. I won’t start any new treatment until next week at the earliest, and maybe wait until after the first of the New Year.

My brother, Scott, has been my chauffer during the time I was restricted from driving, as well as helping me bake and make peanut brittle and dip pretzels and cookies for the holidays. I’m lucky he’s here. And Boda, has spent some time in western Kansas helping to care for her mom post hip replacement surgery.

Boda and I are heading back out to western Kansas this weekend for Christmas. Scott is caring for Ponder and the home front. And life goes on.

I went to a preschool Christmas program this last Monday evening, and it was about the cutest thing I’ve seen in a long time! The kids ranged in age from 2 to 5 years, and they sang and danced and made a train and got presents from Santa. It was very sweet and uplifting, and yes, funny. I totally enjoyed it!

Hope your holidays are happy, peaceful and fun. Take good care. Safe travels for those of you who will be driving or flying anywhere.

Always,

Christy

Monday, December 4, 2006 9:08 PM CST

Welcome and thanks for checking in.

In my last update, I mentioned how very tired I was – just dragging all the time in spite of naps and lots of sleep. Well, last week, when I saw my oncologist, she had some blood work checked and decided I could use some extra blood, so we spent the afternoon at the cancer treatment center while I received 2 units of red blood cells. It must have helped some, because I’m not quite so draggy, and I’m not near as short of breath as I was before. Blood can be a good thing.

My oncologist also made it clear that she didn’t think my having radiation treatments would be compatible with getting chemotherapy, so I will finish my radiation treatments before resuming chemotherapy for the tumors in my lungs.

I saw the neurosurgeon today, and she took out the rest of the staples and sutures, and cleared me to start radiation tomorrow. She said the incision looks good. There’s a rather large scab that I need to leave alone until it just naturally falls off, and I shouldn’t use any lotions or conditioners – baby shampoo only!! It still feels very tight. I decided it feels like I have long hair in a ponytail, and someone is pulling on it as hard as they can all the time. It’s a little different than pain, but definitely right up there in the high level of discomfort zone. Oh, well. I did forget to ask the neurosurgeon a couple things about the pathology reports, but I’ll see her again in a couple weeks and I can ask her then.

So, tomorrow, I go to radiation oncology for my first radiation treatment. Then, I’ll have a total of 10 treatments (every day Mon-Fri) for two weeks. I am a bit leery of the radiation, but it makes sense to me to do it. I just hope that it does its work without much collateral damage to my nearby brain tissue.

Scott arrived last Wednesday night – traveling through ice storms and snow storms – arriving only a couple hours late. Thursday, we got about 8 inches of snow, and it’s been very cold here since. We put Scott right to work taking us to appointments both Thursday and Friday. Over the weekend, we spent some time at a local holiday craft fair and went to a few places on the annual pottery tour – even bought a few things – maybe presents, maybe to keep. It was nice to get out.

Today it was bright and Sunday – still very cold – but great to see some blue sky and bright sunshine. Hope there is sunshine where you are.

Take good care. Always,

Christy

Tuesday, November 28, 2006 9:47 PM CST

Another update. Oh, goody!!

I’m actually doing pretty good. I’m still so tired so much of the time, and it doesn’t take anything to wipe me out. I nap every day, sometimes twice a day, and then, I sleep at night. It’s incredible. I’m really not taking much pain medication anymore. They said I could go back to taking Aleve twice a day (for hip pain) and that seems to be helping with everything else as well.

I saw my neurosurgeon on Monday, and she removed every other staple and every other suture. I’ll see her again in a week, and she’ll decide then whether to take the rest of the staples and sutures out or leave them in another week. I don’t think I’ll start radiation until the incision site looks pretty well healed up, so one or two more weeks. I’ve already been to radiation oncology where they made a couple masks they use to mark and hold your head in place to more precisely aim their death rays. One was too short, so they let me have it – I’ll post a photo.

Thursday, I see Dr. Chapman to see what else we can do about those persistent pesky little lung tumors. At this point, I’d be happy if we can just slow down or better yet, stop their growth. Getting rid of them seems a little unrealistic right now. But then, who knows what’s really possible?

For my general emotional health, I went folk dancing one evening. I mostly did the easier dances – only cheated and really kicked up my heels a couple times. It was wonderful! Then, this last Sunday, Boda and I drove up to Squaw Creek Wildlife Refuge to see the migratory birds and eagles. What we ended seeing the most of were frogs – thousands of frogs. It was incredible and totally unexpected. Tomorrow, I’m hoping to go to yoga.

My brother, Scott, arrives tomorrow evening to stay and haul me around for the next few weeks. I’m excited he’s coming. I hope he really knows what he’s getting into.

I wish I had more room to post pictures, but since I don’t, I’m opting for the Squaw Creek pictures and one of the rad/onc mask. Enjoy.

I hope everyone had a good Thanksgiving – thank you Sandy and Mary Ann for including us in your family celebration.

Take good care. Always,

Christy

Sunday, November 19, 2006 9:57 PM CST

Hi, and thanks for checking in.

I’ve been home for about a week now, and I’m just beginning to feel a little more normal. My head still hurts most of the time, but not as bad as it did. Plus, I’ve cut way back on the narcotics, so my head’s not quite so fuzzy. I still sleep a lot – take a sleeping pill at night and nap a couple times during the day – your late mid-morning nap and your late mid-afternoon nap – both of which can range anywhere from 2 – 3 hours. Reading is really a struggle for me – things just blur up and my attention span is very short. I do my very best when I’m just listening to new age sort of music. To that end, Boda got me an iPod Nano, which I have to admit, I love.

I’d like to thank all the people who volunteered their time to stay with me during this last week in case I might need something or just have an emotional meltdown. It was good not to be alone. Plus, I got some beautiful flowers and some great food! Thanks.

I am happy to say that I can take a shower on my own. I can go on short walks (with an escort). I can do little household things that make me happy. My appetite is good. I got to go to folk dancing tonight for a couple of hours. Things are looking up.

When they discharged me from the hospital, they put me on an antibiotic called Augmentin. Well, it gives me fairly horrific liquid diarrhea, and my butt really hurts. I’ve taken lots of Imodium with little relief. Luckily, today was my last dose, so I’m hoping all the gut stuff will resolve in the next couple days. If not, I’ll be checking for C. diff – that horrible bug I had the first year I was sick. Keep your fingers crossed (or maybe more appropriately, your legs) that it’s not that!

I have an appointment this Tuesday, November 21st at radiation oncology to begin planning for my radiation. Then, the following Monday, November 27th, I’ll see my neurosurgeon to remove some of the staples.

Time just marches on, doesn’t it? In the meantime, some of my friends have been dealing with their own difficult crises. So, thank your for keeping this circle of love intact. The ripples are endless and amazing.

All my love,

Christy

P. S. Ponder is doing much better. He’s just an old guy and needs a little extra loving.

Friday, November 17, 2006 11:38 AM CST

Hi all,
Christy has been home from the hospital since Sunday and she is doing very well. The pain in her head has subsided a bit. It still hurts, but she is able to turn her head a little more and she can bend over without it hurting too badly. She’s got a few other things to deal with; of course, her guts are in an uproar over the big-gun antibiotics that she’s taking. She’s got a couple more days of that and then hopefully things will improve. She will likely be starting radiation in a couple weeks. We’ll know more about that next week.
Thanks to everyone for all your good wishes, bringing food, sending notes or flowers. A special thanks to those who have come to sit with Christy while I go to work. It’s a huge relief to know that there is someone there with her in case she stumbles or needs some emotional support to help her through her day. Thanks!
Have a good Thanksgiving –
Boda

Monday, November 13, 2006 11:06 AM CST

Well, we’re home – Christy, me and Ponder – All feeling a little wobbly and all suffering from sleep deprivation I think.

I now have two patients to take care of – Christy and Ponder. When I came home briefly on Saturday I discovered that Ponder was barely able to move his back end and was having trouble getting in and out of the litter box. Since I was going back to the hospital and wouldn’t be able to keep an eye on him, I took him to the vet. I picked him up this morning. He’s doing a little better I think, but is still a little wobbly in the back end. We’re not sure if it’s just old age or if he’s thrown a clot or what.

At least we know what Christy’s problem is. Her head went through a lot of trauma in surgery – not only were the two tumors removed, but also a portion of the skull, parts of her neck muscles, and a section of her scalp. The dura (brain sheath) was also “burned” to kill any lingering tiny cancer cells. Her head was not shaved at all and the incision was pulled together to cover the part of her scalp that was removed. To look at her you wouldn’t notice anything right away. There isn’t even a bandage. But she is still experiencing a fair amount of pain and is not too steady on her feet. She is moving pretty slow and isn’t able to turn her head much. She seems to be doing okay at managing the pain with the oral pain medication. I think we both got some uninterrupted sleep last night – for a few hours at a time – and she is resting now. Hopefully each day will bring a little more relief from the pain and a little more mobility. (For both her and Ponder).

Thanks again to everyone –
Boda

Sunday, November 12, 2006 2:53 PM CST

It's nearly 3:00 p.m. on Sunday and we just got home from the hospital. It's not the Sunday morning release that we'd hoped for, but we're home! We had to wait for the doctor to get out of surgery to come and write the release orders. Then we had to wait until they deaccessed her port. Then we realized they hadn't given us the antibiotic prescription. But - we were finally on the way.

Christy is sleeping in her own bed. I'm sure it's not "comfortably" - she is still dealing with the pain and will be for a while. But she's happy to be home.

Thanks everyone!

B.

Sunday, November 12, 2006 9:10 AM CST

Christy did fine through the night with oral pain meds. We managed to sleep in 2 hour time increments instead of 1 hour at a time. Right now we're pretty sure that they will be sending her home this morning. As a matter of fact, we're just waiting for the resident to come by and write the order for us to go. Bags are packed, loaded and ready to go.

The next time you hear from us we should be at home.

Thanks again for everything - thoughts, prayers, visits, food, etc.
Later,
Boda

Saturday, November 11, 2006 6:23 PM CST

Christy has had a pretty good day today.

There was a period of time this morning that was pretty difficult when she was feeling quite a bit of pain but then the resident came by and removed the compression bandage from her head. That seemed to make her feel a little better. Her incision looks good. It's about an eight inch incision with staples every 1/4" or closer. It's amazing. I didn't know what to expect when they took off the bandage. I thought there might be a bloody mass of hair, but it really looks fine. Her hair does look like it's been in a stocking cap for 2 days, so that's kind of amusing. But the incision isn't nearly as scary as I thought it might be.

She had her last IV pain meds at 2:30. Since then they have been giving her oral meds. If that manages the pain okay, she will go home tomorrow morning - we hope.

We'll see how we do through the night.

Thanks everyone for all the support. We're feeling grateful to have gotten through this surgery in such good shape and we're grateful for all of you.

Boda

Saturday, November 11, 2006 8:12 AM CST

Friday was a pretty good day. Christy had finally gotten some sleep Thursday night and she managed to get several naps throughout the day on Friday.

Friday night was a little restless for the two of us, with many trips to the bathroom. At about 4:00 a.m. we were wandering the hall - and wondering if we'd be able to get back to sleep. Christy's head was hurting and she was having a hard time getting comfortable. So we just ended up taking a stroll. We did get eventually get back to sleep for a couple more hours.

The pain is pretty persistent but it may be manageable enough by tomorrow for her to go home. She pooped this morning, so the guts are working. So she's met one of the criteria for release. Now if the pain can be managed by oral meds, we may head home tomorrow.

Christy has had a compression bandage on her head since surgery that looks like a stocking cap. They are planning on taking that off today. Depending on how things look, they may or may not replace it with another bandage. They did not shave her head. They just parted her hair and held it out of the way. The incision is held shut with sutures and staples. Those will remain for at least two weeks or more. They are planning on starting radiation in 3 weeks.

Visitors would probably be okay today - brief and not big groups would be best.

Thanks everyone for the emails, calls, and concern. We were pretty stressed out about this "brain" surgery thing. It was much scarier to think of them cutting around in there than it was with the other surgeries.

Well, I feel that I'm starting to ramble - and I need to poop myself!

Boda

Friday, November 10, 2006 12:08 AM CST

Christy is doing pretty well today. She did manage to get some sleep last night - a couple hours at a time. They are doing a good job of supplying pain medication on a regular basis but her head has been through a lot and the pain will be quite persistent for a while.

She got a chance to talk to the doctor herself last night, so she heard all of the details of the surgery and got a chance to ask some questions. That gave her a better understanding of just what went on and I think it has helped her understand the pain and not feel so anxious about it.

Christy is okay with visitors but she would prefer that you keep your visits short and that there aren't large groups of people at once.

We're still hoping to get out of here by Sunday but that depends on the pain - and how well her guts are working.

Read journal history for past updates.

Thanks for all your support -
Boda

Thursday, November 9, 2006 11:36 PM CST

Christy moved from ICU to a private room tonight at about 10:30. After some muscle relaxers and pain medications, she finally started to fall asleep. Hopefully she will sleep through the night without too much pain or worry.

Her neurosurgeon came by this evening and said that she thinks Christy is doing great. The MRI that they did this morning shows no problems. It was her hope that Christy would get better rest in the private room, away from the bright lights and bustle of the ICU. We hope so too.

Our hope is that Christy will be able to come home on Sunday. That will depend on if the pain is under control. Oh, and she has to poop on a regular basis. Pain meds can really slow down the guts.

Read previous entries in the Journal History for more info on the surgery that you might have missed.

The next several days will be tough - in terms of pain, swelling, sleep deprivation, etc.

Goodnight,
Boda

Thursday, November 9, 2006 5:33 PM CST

Christy got to the ICU at about 3:30 a.m. Unfortunately she did not get any sleep. She had a pretty good morning and early afternoon - sitting up eating breakfast and lunch. We tried to shut off the lights and see if she could get some sleep this afternoon but I think the only sleeping was me in the chair.

This afternoon at about 4:00 the pain really took hold. Crying made it worse. And of course there was worry that something was wrong. The doctor told us that the 2nd and 3rd days would be very difficult. Christy is worried that she won't get any sleep tonight either. She is really hurting.

If you're considering visiting you might wait until tomorrow when she is in a private room. She will probably move to a room soon. Right now one is not available. Christy appreciates all your love and support but also realizes that she needs to get some rest. She hasn't slept at all since surgery.

Thanks for all your support.
I'll try to keep you updated -
Boda

Wednesday, November 8, 2006 10:30 PM CST

Surgery is over. Christy's neurosurgeon came out and talked to us a few minutes ago, and I just got back from seeing Christy in recovery. Things ended up being a bit more involved than the report that we heard earlier.

The tumor was quite large, and they had to remove some of the muscles from her neck. The tumor had eroded a hole in her skull and they had to remove additional bone that was infiltrated and unstable. But, the best news is that the tumor did not go into the brain and the dura (sheath of the brain) is intact.

We had thought that the smaller tumor would be easily removed, but it had infiltrated the skin and they had to remove a large portion of her scalp. We didn't expect that.

Christy was awake and talking but she is in a lot of pain. Her face was quite puffy and swollen. She will be in the ICU for a day or two. According to the doctor, the pain will get worse before it gets better. It's going to be pretty difficult for a few days I'm afraid.

Thanks for checking in - I'll try to keep you posted.
Thanks for keeping us in your thoughts.
Boda

Wednesday, November 8, 2006 7:28 PM CST

Christy is still in surgery, but Dr. Chapman (her cancer doctor, not the brain surgeon) came out and gave us an update.
She said that everything went very well. They removed the tumor. It had not invaded the brain. The dura (brain sheath) was intact. This is all great news.
They are in the process of putting her back together - putting a mesh over the hole in her skull.
We're feeling good here that they have removed the tumor without too much trouble and that the brain was not involved.
I'll try to write more after the brain surgeon comes out and talks to us.
Christy will be in the Neuro ICU for a day or so before going to a regular room.
Thanks everyone for the the love and support.
We're feeling quite relieved here.

Thanks,
Boda

Wednesday, November 8, 2006 4:27 PM CST

Just a quick update.
Christy's surgery didn't really get underway until about 3:00. There's not much to report - things are going fine at last report.
More later,
Boda

Friday, November 3, 2006 11:03 PM CST

In my last exciting update of “Christy’s Great Medical Adventure”, it was verified that the lumps on the back of my head are, in fact, metastatic tumors. (Dramatic music plays in the background.) This Tuesday I had a CT scan of my head and neck. Wednesday morning, I saw the ENT doctor who ordered the scans to get the results.

It’s not good news. It’s downright freaky. (Music continues, becoming more intense.)

The CT scan showed that the smaller, more tender tumor is well contained, and it is all outside the skull. (Okay, so that part isn’t so freaky.) The larger squishier tumor behind my right ear is both inside and outside of my skull -- it probably started inside my skull, but it eroded part of my skull away and popped to the outside. Inside, it is right up against brain tissue, and outside, it's under the skin where I can feel it. It's fairly large, and the hole it punched in my skull is about the diameter of a ping pong ball. I haven't had any neurological symptoms because the hole it punched allowed the tumor to grow outward and prevented pressure on the brain. Without that hole, as the tumor increased in size, pressure would build up in my skull, and nerves and blood vessels would be compressed, and ultimately, I’d start having symptoms (problems with balance, headaches, facial numbness, possible vision problems, etc). With the hole there, the tumor can take the path of least resistance, and not cause all that compression and pressure.

So, I met with my oncologist Wednesday afternoon. She was very surprised about this tumor. She couldn't believe that it would have grown that large and eroded a hole in my skull without any pain. She wasn't very positive about prognosis -- pretty much told me I probably wouldn't live to see my 50th birthday at the end of January. I cannot wrap my mind around that, because I really don't feel bad now. So, how can I be dead three months from now?? She referred me to radiation oncology.

I went directly from the cancer center to radiation oncology, where they were waiting for me. That’s the first time in four years that there’s been a doctor waiting for me instead of me waiting for them. The radiation oncologist said he thought I should have the tumor removed and then radiate the area. Irradiating such a large mass would take a large dose of radiation and would likely cause swelling of the tumor and/or brain which could cause major problems. If they could remove some or all of the tumor first it would not require such a large dose of radiation. He said he would consult with the neurosurgery folks. He wanted me to have an MRI, but when they called to make the appointment, it seemed the earliest they could get me in was November 14th. So, Boda and I headed back to the cancer center to get my lab results and head home. As we were about to leave the hospital we stopped to dig through a candy bowl in search of chocolate. While we were doing that the receptionist received a phone call and told me to wait “right there”. Somehow, someone moved my MRI up to “30 minutes from now” that very afternoon. At 6 pm, we finally left the hospital.

Yesterday (Thursday), I got a call from the neurosurgery department at KU, requesting that I be there today (Friday) at noon. I met with the neurosurgeon today. She spent a lot of time with me showing me the MRI, and explaining what everything was and what significance it held. The tumor is more impressive on the MRI than the CT scan, partially because of its size, and partially because of where it is and what it’s close to. She talked about what removing it would entail and what possible outcomes there could be. I liked her a lot. It is all very scary to me, but it seems like my best option right now. I am scheduled for an “occipital craniotomy with tumor resection, possible skull reconstruction and possible placement of lumbar drain” (brain surgery) next Wednesday afternoon. I will probably be in the neuro ICU for a couple days and then in the neuro unit for a couple more days. Did I mention that I’m really scared??

So, in a week, I’ve had fine needle aspirations, a CT scan, and an MRI. I’ve met with an ENT doc, my oncologist, my radiation oncologist, my primary care doctor and a neurosurgeon, and scheduled a surgery for 5 days from now. And, I still have to go in for a pre-anesthesia appointment and have another CT (to better look at the blood vessels in my brain and around my tumor). Sometimes the wheels really do turn at KU.

My oncologist decided to stop the Avastin (she believes the tumor grew right through the treatments I've had). I also decided to skip my Taxol chemo treatment this week. I probably won't continue the Taxol without the Avastin. I've had Taxol before, and it obviously didn't get rid of the cancer, so without the Avastin, I don't really think there's a point to it. Also, I had planned to fly to Albuquerque on Saturday to visit my mom and dad, and I wanted to feel good for the travel and visit, not be feeling tired and punky from the chemo. But then today the neurosurgeon advised against flying. Flying is apparently not such a good idea when you have a brain tumor because of the pressure changes in the plane. So, I’m staying here and laying low. Folk dancing isn’t even allowed and I’ve been told not to drive.

As to how I'm feeling, I am really emotionally exhausted right now. I go from feeling hopeless -- better finish getting my things in order -- to feeling like "Who knows? I might do OK if they can get rid of this thing" -- to feeling just sort of in a panic about everything, totally overwhelmed. Oh, and did I mention I’m really scared?

So, it’s been quite a week. Thanks for taking the time to check in. It means a lot. (music fades)

Always,

Christy

Thursday, October 26, 2006 9:09 PM CDT

Hello.

My latest news is not so good. You may or may not have read the last update (about a week ago). Well, I developed a couple of odd lumps on the back of my head – one is sort of big and boggy, located behind my right ear, doesn’t hurt. The other is smaller and firmer and located in the center of the back of my head and is very tender. Well, I told my oncologist’s nurse a few days after I found the larger one, and then a week later, I stopped by and my oncologist looked at them. After having a colleague also look at them, she opted to just watch them for a while.

At my last appointment, Boda asked her what she was going to do about them, and she made a referral to an ENT doctor. I saw the ENT doc yesterday, and he had pathology come and do fine needle aspirations of both lumps. They called around 5:30 this evening with the final pathology results. It turns out they are both metastatic disease from the primary cervical malignancy. Crap!

Somehow, it just seems wrong and a little disgusting that I have cervical cancer on the back of my head!

Anyway, a little while ago, my oncologist called me at home to talk about this new information. She recommends continuing with the chemo as planned unless the head and neck CT scan next week indicates more disease. I have that CT on Tuesday morning, and then I meet with the ENT doc Wednesday morning. Depending on the results, I may meet with my oncologist next Thursday.

My oncologist did say that they could remove the tender lump if it really bothered me. I think she sort of likes having the lumps on my head – easier to evaluate than hidden lumps in my chest. She also said radiation might be a possibility depending on the CT results.

Now I have about a week to worry all this information to a little nub or maybe into submission. And I probably will. It’s just hard not to. I did have Taxol today, so maybe I’ll just sleep my way through the week.

All in all, none of this seems to bode very well for my overall prognosis, but shoot, as long as I feel OK, it doesn’t really even matter. Denial is my friend – we have grown quite intimate.

So, that’s what I know. I’ll probably update this again next week when I know more. Thanks for checking in. Have a great fall weekend.

Always,

Christy

Thursday, October 19, 2006 8:01 PM CDT

Hi, and thanks for checking in.

I met with my oncologist today after having a chest CT scan done last Thursday. The CT scan indicates progression of disease, as there was some growth of the larger tumors and lymph nodes. There were also smaller tumors that showed ‘cavitation’ – tumors becoming hollow on the inside. That seemed like a good thing to me. Cavitation of tumors generally means that the tumors are dying from the inside because they’ve essentially outgrown their blood supply. I couldn’t get my oncologist to really comment on this, but she did describe my disease as being stable at this time.

So, the plan now consists of adding the chemo drug, Taxol. I will receive a low dose of Taxol every week, and continue the Avastin every other week. There are studies that indicate that the Avastin can enhance delivery of chemo drugs to solid tumors. That’s what we’re going for now.

I received Taxol with Carboplatin back in the fall/winter of 2004. Taxol is a drug whose common side effects include decreased blood cell counts – decreased immunity, decreased energy and potential for bleeding problems – and hair loss, as well as nausea, vomiting, etc. So, they’ll monitor my blood counts every week, and give me Procrit to up my red blood cells (and energy). We didn’t talk about getting a drug to boost my white blood cell count (immunity), but I suppose it’s possible I could get Neupogen after each treatment if necessary. We’ll just have to see how it goes. I had my first dose of Taxol today, along with my fourth dose of Avastin.

The biggest impact this will have relates to me working. I’ve worked a few shifts in the pediatric ICU doing patient care. It’s been mixed for me. I really like being there and doing something that feels more like a “normal” life. It feels more positive than always concentrating on the cancer. On the other hand, the 12-hour shifts are too long, I think. It takes me a couple days to recover after I work 12 hours. And, I don’t like feeling the stress of the job. It’s all harder for me than it used to be. I don’t remember things as well. I worry I might miss something important. It scares me. So, for now, I’ll continue attending some committee meetings and doing some paperwork, but I won’t be doing patient care while I’m on the Taxol. I may also look into other part time clinic jobs at Children’s Mercy Hospital, and see how that might work out for me.

The only other medical deal I have going are a couple of lumps on the back of my head. One of the lumps is behind my right ear and is pretty large and sort of boggy. It doesn’t hurt at all. The other bump is in the middle of the back of my head. It’s smaller and harder and pretty tender. They are very different beasts. My oncologist doesn’t really know what they are and she doesn’t feel comfortable biopsying them, so she’s referred me for an ENT (ear, nose & throat) appointment next week.

On the home front, we’ve been doing some yard work in preparation for winter. We dug up some old and very well established peonies and moved them. We’re planning to extend our front stoop and have the front section of our driveway and the walkway re-poured. We’re also adding a little section of walkway to make it easier for visitors to get to our house, as well as adding a stair step. The peonies were right where we wanted to extend the stoop. I hope they survive. We also moved some other flowers and trimmed some branches off the cedar trees on the north side of the house. We pulled out our tomato and pepper plants, and Boda tilled our veggie garden. I took two rose bushes out, not knowing what to do with them. So, now one is in a pot, and the other bigger one is living in one section of our compost pile. Hmmmmm…

So, that’s about all I know. Take very good care. Christy

P.S. I added more pictures from Alaska. Enjoy.

Thursday, September 21, 2006 9:01 PM CDT

Hi, and happy autumn.

It’s been about 5 weeks since I last updated this website. In that time, I started receiving a new drug, Avastin. I received one dose in August, before we left for our trip to the northwest, and I received the 2nd dose the week I got back. It seems I’ve experienced some new skin problems, but I’m not entirely sure they aren’t things I would have had anyway. I had a rash on my arms, but maybe I’m allergic to something about the sleeping bag I slept in while on the boat in Alaska. I had a patch of what looked a lot like shingles (but hasn’t really acted like shingles) on my leg. My face has gotten really dry and peeled with both doses, but then, I spent time out in the wind and the sun after both doses. So, who knows? None of it has been unbearable, so I’m pretty happy with how I’m feeling.

Our trip to the northwest was good. We spent a weekend in Seattle visiting friends and enjoying really beautiful, sunny weather. We did a little shopping at REI – Seattle has a great store. We went to Gasworks Park early one morning and watched the sea planes taking off – very cool. We went to the locks and fish ladder for an afternoon. We ate great food – thank you Maud and Alayne!

From there, we flew to Juneau, Alaska to meet up with my brother, Scott, and his boat, Querida – a 26 - foot sail boat/motor boat. We made a similar trip about four years ago – the boat seemed smaller this time around, at least, initially. The next 11 days, we spent on the boat with short excursions to shore. Before leaving Juneau, we went out to Mendenhall Glacier -- a glacier that’s receding at about 300 feet per year (increased from 60 feet/year back in 2000). Perhaps global warming is real… We saw it 4 years ago, and we could really see the difference. The next day, we did a little grocery shopping, returned the Rent-A-Wreck, and then headed out.

The high points for me were about the incredible beauty and the wildlife we encountered. On two different occasions, we found ourselves in our little boat, surrounded by humpback whales. You could see spouts and whale tails and backs all around. As Boda has so beautifully put it, it was like the ocean was breathing. At times, we could even hear the whales singing – amazing! We also spent some time at a Forest Service bear observatory, where we did, in fact, see black bears catching salmon in a raging creek. Almost more amazing than the bears, were the fish themselves, swimming and thrusting themselves upstream. Every now and then, we’d see a fish jump some 10 feet in the air to move forward only about 2 feet. We also saw many eagles, porpoises, sea lions, seals and sea birds. Nature is amazing. We had hoped to see tidewater glaciers, but the weather didn’t cooperate. The icebergs were good though – so blue.

We had a very rainy time of it, which made the 50 degree weather seem colder. We also had a couple days when we couldn’t really go out due to rough seas. We did a bit of kayaking in Scott’s two person kayak, and on shore, we did a bit of hiking on plank trails through very lush forests. We stopped in both Petersburg and Wrangle – small fishing communities, each with it’s own personality. The day before we needed to get to Ketchikan to make our flight home, the waters in the main channel were very rough – too rough for Querida. As luck would have it, Scott got us a ride on a 50-foot yacht, named Brave Spirit. The ride was still fairly rough, but we felt safe, and, dang, it was a yacht!! We did feel bad leaving Scott in Meyer’s Chuck, but dang, it was a yacht! It might be my only yacht experience. It was exciting!

So, we’re home, and the weather has been great. Last weekend, I participated as a member of the medical crew in the Susan Komen 3-Day Breast Cancer Walk. It was a great experience, but fairly exhausting.

Since we came back from our trip, I’ve been making a concerted effort to go back to work. I’ve worked two 8-hour shifts in the pediatric ICU. I was pretty nervous after not working for two years – had very weird dreams the nights before I worked. So far, it’s gone OK. I get very, very tired, and my lower back screams loudly. I’m thinking maybe I can work up to doing the 12- hour shifts. I’ve been teaching and going to some meetings, as well. I guess I’ll just have to see how things go. It’s been great being back. I work with wonderful people.

Next week, I get my 3rd dose of Avastin and meet with my oncologist. I’ll find out then when I get scans done again to see what’s happening inside. And the journey continues….

Thanks for checking in. Take very good care. Always,

Christy

Wednesday, August 16, 2006 10:54 PM CDT

Hello, welcome, and thanks for checking in.

It’s been a roller coaster month for me emotionally. In my last update, I talked about two clinical trials my oncologist recommended. It turned out that both trials are closed, meaning they are not enrolling any new patients. That was disappointing, and left me wondering what I would do. The drug my doctor has wanted me to try is called Avastin. It’s the drug that stops blood vessel growth to the tumors – an anti-angiogenesis drug. She submitted it to my insurance company over a year ago, and it was denied. She submitted it again, but I didn’t really have much hope they’d change their minds. She also said that if nothing else came through, she would give it to me anyway and make the drug company pay for it – sounded a little hot-airish to me, but I guess you never know.

So, I’ve been feeling up in the air and down in the dumps. I don’t deal so well with just sitting and waiting. I deal much better with this whole cancer thing when I feel like I’m doing something about it.

Last Friday at around 6 pm, we got a call from my oncologist’s nurse to let me know that the insurance company had indeed approved payment for the Avastin. I could hardly believe it! So, I paged my oncologist right away, ‘cause I had some questions for her. It turns out that she was out of town. But, when she got back to town on Sunday afternoon, she called me up, and we talked about starting the Avastin.

Monday morning, I called to see when I might be able to begin the new treatment, and they got me in on Tuesday morning. So, I’ve had my first infusion of the Avastin, and so far, I feel fine.

Boda and I delayed a trip we’d planned in order for me to get the Avastin, but we’ll still get to go this Friday unless some sort of unexpected side effect pop up before then. I seriously thought about waiting until we got back from our trip to start the Avastin, but I really wanted to get started, and I’m feeling like it was the right choice. We missed celebrating a good friend’s 50th birthday at Discovery Bay near Port Townsend, Washington. That sucked. But, we will still have the weekend in Seattle and then ten days or so on the boat with my brother exploring between Juneau and Ketchikan in Alaska. It will be wonderful to be rocked to sleep near the mountains and glaciers of Alaska.

In September, I will be helping with the Susan Komen 3-Day Breast Cancer Walk as part of the medical crew. I am attempting to do some fund raising as I believe the Foundation is a great cause not only for folks with breast cancer, but for anyone with cancer. I am looking forward to being a part of the event – just feeling the energy created by the walkers (60 miles in three days!). Thanks to all who have donated to this cause. I have been truly touched by the generosity you have shown. If you’d like to donate, check out my website: www.the3day.org/KansasCity06/christysimpson.

So, once again, thanks for checking in. The fact that you still check in to see how I’m doing after all this time means a lot to me. Sometimes, I feel as if I must be like one of those stores that has a Going Out of Business sign up for years, and you drive by, and think “yeah, yeah, whatever”. Anyway, thanks.

Enjoy the rest of your summer. I send love.

Christy

Thursday, July 13, 2006 10:00 PM CDT

Hello. Thanks for checking in. It’s sort of hard to believe that it’s already mid-July. Time just keeps marching onward, eh?

In my last update, I mentioned a trip I was planning to Oregon the first two weeks in June. Well, it was a good trip. I drove from Portland to Milton-Freewater to Bend to Depoe Bay to Portland – visiting friends and family along the way and taking in the beautiful sites.

I caught up with an aunt and cousin that I haven’t seen for over 30 years. I really enjoyed it – wished I’d spent more time there. I got to see my sister’s new house and spend time with her and her great dogs. I got to see my brother before he took off on his boat up the inside passage to Alaska. I had a nice visit with his wife, her mom and sister, and her sister’s kids – got to ride a scooter and play with super hero action figures. And, I met up with three of my high school friends at the beach for a weekend of laughing, eating, walking on the beach, and general catching up.

I suppose my favorite place to be was the coast – walking on the beach, hearing the waves and watching the tide roll in and out. Exploring tidal pools to find starfish, sea anemones, mussels, barnacles and a sea cucumber. Coming upon a harbor seal on the rocks just up the beach from the house. The ocean truly is awesome.

The day before I drove home, I spent an afternoon in Washington Park in Portland wandering through the Japanese Garden and the Rose Garden. It was a relaxing way to spend an afternoon. And by then, I was ready to come home.

I’ve continued getting IV vitamin C infusions twice a week, and my chemotherapy every other week. Last Thursday, I had CT scans done to see if my cancer is susceptible to the chemotherapy. Today, I saw my oncologist and got the results. The results stink. My tumors are growing and there are more of them. There are also two enlarged lymph nodes in my chest, which makes the likelihood for spread to other organs (especially my liver) greater than before.

What that means in terms of treatment is that I’m done with the Gemzar (most recent chemotherapy). My oncologist presented me with two clinical studies she thought I should consider – both involve the use of anti-angiogenesis drugs – drugs that are intended to prevent the formation of new blood vessels in the tumors, so that they can’t grow. Do you remember the Avastin? A year ago, my oncologist recommended it, but I didn’t qualify for any clinical trials with it and my insurance wouldn’t pay for it, and I couldn’t see paying $10,000 a dose for it. That is one of the drugs being used in one of the trials. The other trial is for a drug that has a similar goal, but works in a different way. It’s called VEGF Trap. I spoke with the investigator for one of the trials today and will submit information to see if I qualify. I hope to speak with the investigator for the other drug tomorrow. Both clinical trials will require that I travel for treatment – either to Maryland or to New York. So, I will get more information and then try to figure out what to do.

The appointment today felt a little deja vu-ish. A little over a year ago, I was told I had 40 some tumors in my lungs and my treatment options were limited. It’s when I started the IV vitamin C and wondered how long I’d live. As my oncologist said today, I’ve defied the odds. I’m alive. I’m basically in good health. I must still have some living to do. So, I will pursue these clinical trials, travel with Boda to Alaska for a couple weeks in August and be well until I’m not. Wish me luck.

Thank you to all of you who continue to support me in the myriad of ways that you do – even if it’s just an occasional thought. It all adds up.

Enjoy the rest of your summer. I send love.

Christy

Friday, May 26, 2006 3:36 PM CDT

Hi. Thanks for checking in. I guess it’s been awhile since I updated this website. Sometimes, it doesn’t really seem like there’s much to say. In this case, that’s really a good thing.

Anyway, I have been getting chemo treatments (Gemzar) every other week since the end of March. I mostly do OK with it. I usually feel OK the day of chemo and the day after, and then I feel pretty tired and yucky for 3 or 4 days. My hair is not falling out in clumps, but it is definitely thinning. Lucky for me, I started out with some extra.

Besides the chemo, I also have labs done every week and get IV vitamin C twice a week. So, I spend quite a bit of time at the hospital. I saw my oncologist yesterday, and I will have scans done the first week in July, and then meet with her the next week to see where things stand.

When I was on the Prednisone, my doctor took me off a number of drugs in order to figure out what was causing all my nasty symptoms. One of those was Prozac, which was fine with me. But over the last few weeks, I found myself feeling fairly depressed and quite irritable – another reason why I haven’t written for awhile – who wants to read a lot of boo-hoo or a string of cuss words or name calling?? Anyway, I’m back on the Prozac, and I have, in fact, felt better. So, that’s good – good for me and good for Boda and just good all the way around.

I think I’m finally gaining back some of my strength since being off the Prednisone. That feels good, too.

Next week, I am taking off for the great northwest – Oregon, specifically. I will be there for two weeks, which means I get an extra week reprieve from chemo. I’m going to visit friends and family. I’m looking forward to it.

So, that’s what I know. It’s getting hot here, and we could use some rain. A friend of mine from Seattle called today. She’s planning to go camping this weekend, and the forecast is for snow. Wherever you are, I hope you have a lovely weekend, and a great summer.

Always,

Christy

Sunday, April 2, 2006 4:21 PM CDT

Hi, and thanks for checking in.

The good news is that I am officially off the Prednisone. My face is a bit smaller, though still rather pudgy. My legs are still skinny, but I don’t feel near as weak. My blood pressure this last week was 88/57 – a bit low, so now I’m off the blood pressure medication. I am very glad to be off that darned medication.

I saw my oncologist this last Monday and decided to resume the chemotherapy – Gemzar. I started this last Thursday. I started with a fairly low dose, which will be increased if I tolerate it OK. I felt pretty good on Thursday and Friday, but yesterday and today, I haven’t felt so great. My head hurts a lot, and my guts aren’t very happy – I feel so bloated. And, I’m also feeling very achy. I probably felt all of this before, but it’s been long enough ago that I don’t really remember. I’m pretty good at denial. My oncologist seems fairly concerned that I won’t tolerate this chemo as it has as one of its side effects, lung toxicity. Time will tell. I still have a cough, but who knows what that’s from??

I’ve decided to restart the IV vitamin C infusions while I’m doing chemotherapy. I don’t really know if it works, but there’s enough of a “maybe” that it’s worth it for now.

I’ve been singing a bit more lately. I sang for a friend’s birthday and another friend’s 20th anniversary. My favorite gig, though, was singing at a preschool for 30 kids, age 2 – 6 years. They were so attentive, and sang along even when they didn’t know the words. It was quite fun.

It’s been a lot like spring here – lots of flowers blooming and trees budding. I’ve wandered through the neighborhood taking pictures. Boda has mowed our yard at least twice already. It seems like winter is pretty much over.

I hope all is well with you. Take good care, and enjoy the spring.

Christy

Monday, February 27, 2006 9:11 PM CST

Hi, and thanks for checking in.

Since I last wrote, many of the side effects from the Prednisone that I was experiencing have magnified. My face is getting bigger by the day. My cheeks have gotten so big, I have ledges under my eyes that I swear I could put little figurines on. I'm getting a fine layer of hair on my face -- luckily it's very blonde and not that noticeable. I'm not sleeping well, and the sleeping pills I've tried make me dizzy and loopy during the day -- so I don't take anything and just don't sleep much. I've lost a lot of muscle mass from my arms and legs, and I'm very weak and shaky most of the time. I can walk OK, but getting up and down out of a chair or going up and down stairs is really hard work. My blood pressure is high -- like 160/100 -- and my heart races. My head is fuzzy/foggy most of the time, and I have headaches fairly frequently. I bruise like a big dog. I feel like I'm about 90 years old. It sucks.

I had CT scans of my chest, abdomen and pelvis, and an MRI of my head last Wednesday, and today I met with my oncologist. The news is mostly good. The cancer hasn't spread outside my lungs. Some of the tumors in my lungs are slightly bigger, and the report isn't very clear about whether or not there are more tumors, but it doesn't specifically say there are, so we'll assume there aren't.

So, that means that all these symptoms I'm having are not related directly to the cancer. I asked them to check my blood to see if I'm getting too much synthroid (a drug I take as a thyroid hormone replacement that helps regulate my metabolism). It seems that perhaps I am taking too much. That could contribute to a high blood pressure and heart rate. They are running a couple more tests on blood they collected today and will adjust that drug dose.

All my other symptoms seem to be related to the Prednisone. My oncologist consulted an endocrinologist about all the symptoms I've been having and how they might relate to the steroids (Prednisone). Now he wants to see me and is making noises about me staying on low dose Prednisone for an extended period of time. He will have to have some damn good reasons for me to stay on it any longer than absolutely necessary. When the receptionist went to make the appointment with this endocrinologist, they said something about an opening in June. Yeah, right. Like, I'll just keep taking this until June waiting for an appointment. They're supposed to call me at home to make an earlier appointment. If it's not in the next 2 weeks, I won't be taking the drug anymore anyway.

In the meantime, I am starting on a blood pressure medicine, and I'm stopping the Coumadin (blood thinner that might be contributing to the bruising). She's also having me stop taking Prozac just to rule that out as something that might be making my head fuzzy/foggy.

So, there we are. My biggest fear was that the cancer had spread outside my lungs, and it hasn't. So, I am very happy about that. I'll just have to keep dealing with the effects of the Prednisone, knowing I WILL get off it at some point.

Again, thanks for checking in. I’m hanging in there. Hope you are too.

Christy

Thursday, February 9, 2006 9:50 PM CST

Hello.

It’s a month and another doctor’s appointment later. It’s not been a particularly good month for me, so if you don’t want to read about my many woes, maybe just skip this update and try again later.

(Music, please. ♫ Let the whining begin.)

So, I’m still on the prednisone, and the side effects seem to be getting more pronounced and harder for me to deal with all the time. I think that what’s making me feel the worst right now relates to muscle wasting. My legs are incredibly weak. When the resident tested my strength today, he commented that my legs are weaker than my arms, and trust me, my arms are nothing to write home about these days. It’s an effort to get up out of a chair. I’m also not sleeping well or much, so I’m very tired/fatigued these days. All in all, I’m just dragging.

Now, let’s paint a little picture of how prednisone has affected my appearance. I have a big fat face, chicken arms and legs, fuzz on my face, little squishy fat pads on my shoulders, and I’m developing a little fat pad hump at the base of my neck. Let’s just say that the mirror is not really my friend these days.

On a sadder note, my dog, Daisy, was hit by a car and died about three weeks ago. I really miss her. A few days later, I sliced one of my fingers on a sharp kitchen knife. It bled and bled. A couple days after that, I realized that I had thrush (a yeast infection) in my mouth (not uncommon when taking prednisone). Then, this last weekend, I had some sort of virus or bug and felt like crap. Now, I seem to have a bit of a cold.

(I warned you that there would be whining.)

Now, maybe you’re wondering what my doctors had to say today. My oncologist has some concerns that my cancer may have spread as I’ve been losing weight even with a good appetite, so I will have more scans in about 2 weeks, and then figure out where to go from there. The radiation oncologist feels that I can continue to wean the prednisone as long as my respiratory symptoms remain stable. That’s a good thing. (See, there is a good thing!)

On a brighter note, I had a really nice birthday – good food with good friends. Lots of cake. My brother was here in town for about 10 days – good visit.

So, thanks for checking in. Things will perk up for me. They’re just bound to.

Take good care.

Christy

Thursday, January 12, 2006 10:38 PM CST

Hello, and thanks for checking in.

I met with both my radiation oncologist and my gyn oncologist this week to follow up with my radiation pneumonitis (lung ‘burns’ from the radiation I had in September). I had a chest CT last week, and the news on that is good. The large tumor that I had radiated has shrunk considerably. It went from being about the size of a large lemon to the size of a large walnut – fairly amazing, eh? And, none of the other smaller tumors have increased in size. All of that is good news. (I had sort of hoped to hear that some of the smaller tumors had shrunk or gone away completely…. But, OK, lets not be greedy.)

Last week, my breathing seemed so much better that I started decreasing the prednisone (the drug I’ve been taking to decrease the inflammation in my lungs). Within a couple days, my symptoms were coming back, and now I’m back on the same dose as before. My lungs are just not healed yet. I get short of breath just walking to the basement – that’s discouraging.

So, the chemotherapy is still on hold, and it looks like I’ll be taking the prednisone for awhile. For those who are unfamiliar with prednisone, it has some rather icky side effects. I wake up numerous times during the night sweating, sometimes soaking wet. So, my sleep isn’t too whippy. My cheeks are growing larger each day – called “moon face” and not particularly attractive – just imagine chipmunk cheeks gone out of control. I look in them mirror and think my mouth is getting smaller, but really, my cheeks are getting bigger. I’m hungry most of the time. My moods are a bit more labile and unpredictable – that’s always fun. And, then, there are things like high blood sugar and a depressed immune response and etc…. I don’t want to take it any longer than I need to, but it looks like I need to for awhile longer.

I know that I’m very lucky to be here three years later and to have the life I have, but today, I’m just tired of having cancer.

On that happy note…. thanks so much for taking the time to check in. I really do appreciate it. Take good care.

Christy

Tuesday, December 27, 2005 9:42 PM CST

Hello again.

Well, I’ve met another little bump in the road with my treatment. I started having more difficulty breathing and a fairly consistent dry cough and fevers every evening. All this was consistent with symptoms described to me as radiation pneumonitis. So, I called my radiation oncologist, and I tried a week of ibuprofen around the clock. That didn’t do much, so now I’m on a month of Prednisone – a steroid which has anti-inflammation effects along with a few side effects. Within a few days, many of the symptoms were relieved, so that was good.

I met with Dr. Chapman the following week, and she felt strongly that I should take a break from the chemo until my lungs cleared up, and maybe even change the chemo after that. I was and am a little nervous about this chemo break, since it seemed we’d just found a drug that my tumors were sensitive to, but she was adamant that my lungs heal up first.

As it turns out, I’ve had really nice holidays – no chemo! Some gifts are just so unexpected. Boda and I traveled out to western Kansas to spend a little time with her family. It was quite nice, and I’m really glad we got to go.

So, next week, I have another chest CT scan and some pulmonary function tests. The week after that, I meet with both my radiation oncologist to determine if I can start weaning off the Prednisone, and then with Dr. Chapman to see about resuming chemo.

It’s been three years since my diagnosis. On the one hand, I just want it to go away, and it doesn’t, so then I just want to cry. On the other hand, I’m still here and living a good life – not the life I expected, but, hey.

So here’s to another year and more lessons learned, and some good belly laughs.

With much love,

Christy

Monday, December 12, 2005 10:21 PM CST

I realized that I haven't updated this since my last chemo treatment. Thought maybe I should.

The chemo itself seems to be going OK. I get achy and tired and my guts sort of shut down for a few days, but then things get back to normal.

It seems that right now I'm dealing more with the side effects of the radiation I had to the large tumor in my left lung. I've got a somewhat worsening cough. I get more short of breath doing less stuff. And I have fevers nearly every evening. That part makes me feel fairly crappy. I don't like it. One night, even my teeth ached.

I don't really feel as whiny as all that sounds -- at least most of the time. Sometimes it just all sort of gets old....

Here in Kansas City, we had 10 inches of snow last week, and then cold weather, so it stuck around for a little while. It's mostly melted now, but it was quite beautiful while it lasted.

Take good care and enjoy the holidays, however and wherever they take you.

Always,

Christy

Thursday, November 10, 2005 9:02 PM CST

MY TUMORS ARE SHRINKING!!!!

I got my CT scan results today, and yes, it’s true, my tumors are shrinking! Now, as you may remember, in September/October I did five weeks of chemotherapy and radiation with the intent to shrink the “big honkin’ tumor” in my left lung. The radiation was targeted at that tumor, and the chemotherapy was to enhance the effects of the radiation. The “big honkin’ tumor” did shrink some – I sort of expected that. What I didn’t expect is that some of the smaller tumors outside the radiation field also decreased in size AND there are no new tumors. That would indicate that my tumor cells are susceptible to the chemo drug I received with the radiation. None of the other chemo drugs I’ve received have had any effect on the tumors – they’ve just grown even as I’m receiving the drugs. This is new and good.

So, next week, I will start more chemo treatments using this same drug – Gemsar. This time, the dose will be higher than I received with the radiation, and instead of getting treatment every week, I will get it every other week. I’m also going to resume the IV vitamin C treatments – who knows? Maybe it’s the combination of the two. I’m not taking any chances.

Having said all of that in my current state of excitement, I feel that I should also say that to truly be realistic, I know that these cancer cells can mutate and become resistant to the chemo, and I also know that it could spread elsewhere. I am not blindly optimistic. But, for today, I’m doing a dance and celebrating the first good news I’ve had in quite some time!

Feel free to do your own little dance and celebrate with me. And, thank you so much for your continued support, caring, thoughts and prayers.

With much love and gratitude,

Christy

Wednesday, November 2, 2005 10:51 PM CST

Hi, and thanks for checking in.

After finishing five weeks of chemo and radiation to shrink a big honkin’ tumor in my left lung, Boda and I went on a three week road trip to the northeast part of the country. We spent time at Niagara Falls, in Vermont, in Maine, in Cape Cod, and came home via Pennsylvania, Virginia, West Virginia and Kentucky. The most distinctive characteristic of the trip was the rain. There were times that it seemed ceaseless. There was also incredible beauty, from autumn colors of the tree covered hills to mist hanging down in the valleys, to incredible water falls, made more incredible by all the rain.

From Niagara Falls to Maine, there was nearly constant rain wherever we were. We still managed to do a little hiking in the White Mountains and visit good friends in Vermont, but, oh, it was wet! In Maine, we had three days of sunshine, which was fabulous. We hiked, and we went on a whale watching trip where we saw finback whales very close to the boat! And, I spent half a day rock climbing at Otter Cliffs right at the ocean. I had never been rock climbing before – just scrambling on rocks and boulders – always sort of fascinated by it. Anyway, I picked up a brochure about rock climbing classes, and called them up (with much encouragement from Boda) and then, there I was rappelling down the cliffs and climbing back up. It was great and challenging and exciting. I really do wish I’d known more about it thirty years ago, when I was a brave and foolish teenager. Anyway, our time in Maine was good. The day we headed down the coast of Maine, it was once again, raining. When we got to Cape Cod, where we’d hoped to ride bikes on the dunes, visit the Cape Cod Potato Chip Factory, and visit the cranberry bogs, there were predictions of 60 mph winds and 2-5 inches of rain, as hurricane Wilma made her way up the coast. So, we headed inland, through rain and even a little snow. We did spend some time at Monticello – Thomas Jefferson’s home in Virginia – we both really liked that – more than I thought I would. We drove part of the Blue Ridge Parkway – beautiful, and then we headed towards home, across West Virginia, Kentucky, Indiana, Illinois and finally Missouri.

The trip reminded me a little of the past three years – lots and lots of rainy times. We had a couple times where decisions just seemed impossible, because it seemed as though whatever decisions we made about what route to take or what plans to make, they would be the wrong ones – it would just keep on raining. But, then there was always beauty around us if we could only remember to look for it. There were low points and high points and challenges along the way. It just was what it was, and overall, it was a good trip. (So much for my attempt at poetic metaphors…)

So, in my last update, I mentioned that I’d developed a rash on my back (from the chemo). That persisted for about two weeks, but resolved after that. I had also started having pain swallowing, and that lasted about 10 days. It worried me a little, in that I wasn’t sure how bad it would get before resolving, but it was never too awful – I could always eat and drink. No breathing problems at all.

Today, I had another CT scan of my chest, and I’ll find out the results a week from tomorrow – November 10th. Ah, the waiting….

Thanks for checking in. Take good care. Remember to look for the beauty – it’s there.

Christy

Saturday, October 8, 2005 10:00 PM CDT

Hi.

Monday, I got my last chemo treatment, and yesterday, I finished my last radiation treatment. Those five weeks came and went pretty quickly. I really tolerated it all very well.

This last week, I developed a rash on my back, which is a side effect of the chemo drug I’ve been getting – very itchy! And, I’m having a little trouble/pain when I swallow – a potential side effect of the radiation. So far, I’m really not having any problems breathing or any of the other symptoms that go along with radiating part of my lungs. But, I’m pretty tuned in to them, so if something should come up, I’ll know to check it out.

Tomorrow, Boda and I are taking off in Vincent (our van) for a three-week trip to the northeast part of the country. We managed to get just about everything packed up today. Tomorrow morning, we’ll put the bike rack and the bikes on the back of the van, and pack up the cooler and be off. I’m very excited! It should be beautiful just about everywhere we’re going.

That’s about all I know. Thanks for checking in. Take good care.

Christy

Monday, September 26, 2005 7:36 PM CDT

Hi. Thanks for checking in.

Well, I’ve completed 3 out 5 weeks of my current treatment. Week #3 chemo was not given due to low platelet count. I still did all the radiation treatments that week, however. So, that just leaves this week and next week. Isn’t that amazing? It was nice not having chemo last week. I was still pretty tired, but no other side effects to speak of. I did all the treatments today, so we’ll see how the week goes.

My next scan in November 2nd, and I meet with my oncologist again next week and then the week after the CT scan. That will be when I get some notion about whether or not this treatment is affecting my cancer, or I’ve just managed to really piss it off. (I can’t help it – I just have those thoughts.)

For now, we’re slowly getting ready for our road trip – hopefully heading out the weekend after my last radiation treatment. We don’t have firm plans, just a general direction. We’ll do a little more research before we actually take off.

Not much other news about me. It’s starting to feel like autumn – cooler and a little less humid. I am enjoying it. Hope you are too.

Take good care.

Christy

Wednesday, September 7, 2005 6:39 AM CDT

Hello and welcome.

Well, I started this next leg of the journey – more chemotherapy and radiation. Yesterday was my first chemo and radiation treatment. It all went fairly smoothly –no big delays or snafus (isn’t snafu an odd word?). I found myself very weepy in the cancer treatment area – no particular reason – just reality tapping me on the shoulder again.

I haven’t really noticed any side effects from the chemotherapy. I’m not really surprised – usually the day you get the chemo is a breeze – it’s a couple days later you start to feel yucky. Time will tell. I took some zofran (an anti-nausea medication) before I went to bed, just to ward off the nausea and vomiting demons – so far, so good. I smeared pure aloe vera gel on my chest and back to help protect the skin from the radiation. It’s a good thing I do yoga, so I can reach all the way back there!

I am amazed and appalled at the devastation from hurricane Katrina. It makes my situation look like a piece of cake. Nurses from Children’s Mercy Hospital (and many other places, I’m sure) are volunteering to go to areas where they are needed for a couple weeks at a time. I feel rather selfish doing treatment instead of going, but I don’t really think the stress and physical conditions would be that great for me anyway – still selfish, I know. I guess I will have to look for other ways to help – sending money sounds a little impersonal, but it might be the best I can do for now. Of course, there is always sending love, energy, prayers, whatever feels right and makes sense – it’s a little ethereal for me, but I do it anyway.

Take care. Don’t forget to enjoy your lives.

Sending much love,

Christy

Wednesday, August 31, 2005 7:13 PM CDT

Hi. Thanks for checking in.

Well, it looks like I’m set up for my chemo and radiation treatments. They will start this Wednesday morning. I’m starting out with a single chemo agent – Gemcitabine (Gemsar) – which I’ve never been exposed to before. If I tolerate that, they will add Cisplatin – which I have received a number of times.

Tonight, I was reading articles about this combination and there is some evidence that the Gemcitabine improves efficacy of Cisplatin in people who have platinum-resistant tumors (which I do). One article described it in the following way:

Cisplatin causes a change in the DNA of cells, which results in the inability for those cells to continue to divide. When those cells become resistant to the Cisplatin, the tumor cells seem to figure out how to go in and repair that section of altered DNA, thus allowing unrestricted growth of those cells – the tumor continues to grow. The Gemcitabine potentially prevents the tumor cell repairs from occurring.

Anyway, it sounds like a good idea. The side effects vary a bit. Immunosuppression – low white blood cell count, anemia – low red blood cell count, low platelets, and nausea are the main ones. Other bonus side effects include flu like symptoms – fever, muscle aches, head ache, etc. ; mouth sores; rash; shortness of breath; maybe hair loss (maybe not); neuropathy in your hands and feet – numbness/tingling; changes in hearing; edema – swelling, usually in the face or arms/legs; sweating (I need more sweating….. like a hole in the head); constipation or diarrhea.

Of course, I might not get any of the less common side effects. That would be good. I’ll just have to deal with it as it happens.

So, this might be more than you really wanted to know. I’m very nervous, but still, perhaps foolishly, optimistic. I don’t know when my next scans will be. I see my oncologist a week from this Thursday – September 8th.

Again, thanks for thinking of me and checking in. It is truly appreciated!!

Take good care. Much love,

Christy

Sunday, August 14, 2005 10:40 PM CDT

August 14, 2005

Hello. And thanks for checking in.

I am feeling good these days. I had a good trip to Albuquerque to visit my family. I walked in the “Race for the Cure” this morning. I’ve been rehearsing with Rosy’s to sing in September. And, just today, I finished making a soft vinyl cover for one of our van cushions. Speaking of the van, she has been christened “Vincent” – as in Vincent Van Go.

As for my most recent CT scan. It’s not so great. The tumors in my lungs to continue to grow at about the same rate they have been. The largest is now about the size of a lemon (increased from the size of a golf ball at the beginning of June).

You know, it’s not like I didn’t know the results might be what they are, but when I actually heard the news, I felt like I’d just learned that I have cancer and might die from it. I was even a bit stunned – like, “What? Me? There must be some mistake!” I so wanted to hear something different. I so believed that it was possible. Every time I get my scan results, it just kicks my ass right out of denial. I hate it.

Anyway, because of the location of the largest tumor, my oncologist recommends that I receive radiation just to that tumor, along with some chemotherapy that will enhance the effects of the radiation. The tumor is very near my spine, and she is concerned that if it impinges on my spine, it will be very painful. The radiation/chemo might prevent that from happening, at least for a while. I need to meet with the radiation oncologist to learn more about it and find out if it is even possible to radiate only the tumor without damaging my heart, which is also very close to the tumor.

After learning my most recent scan results, I spent a couple days thinking maybe I should do more systemic chemotherapy, and wondered if I’d made a mistake by not doing it after the last chemo drugs didn’t work. Maybe a different chemo drug would get rid of the cancer. Maybe… But do I want to be that sick again not knowing if it will make any difference at all? The decisions are all so hard – harder than they might seem from a distance. I wonder sometimes if my doctor looks at me and thinks, “Man, she just doesn’t get it.” I look at myself and wonder that very thing. Anyway….

I also need to have a colonoscopy in a couple weeks to see what’s causing the bleeding and see if there is anything they can do to stop it. My oncologist won’t do more chemo unless my guts are healthy enough to tolerate it – no infection, no ulcers, etc.

So, that’s the news. I’m pretty sure I’ll do the radiation and chemo to try and control the largest tumor. I doubt I’ll do any more systemic chemo to try and eliminate the cancer. I don’t know what to do about the IV vitamin C. I guess I’ll do it for another 6 weeks or so – give it a fair chance to work.

Except for the emotional impact of all of this, I’m really doing very well. I may be able to slide right back to my land of denial – it’s happier there.

Take good care. Sending love,

Christy

Wednesday, July 20, 2005 9:10 PM CDT

Welcome.

It’s been about a month since I wrote last. I’m doing well overall.

I’ve had ten infusions of the IV vitamin C, and I’ve been taking all the supplements and doing my healthy diet for about 4 ½ weeks. The only real affect that I’ve noticed is that my GI tract is not entirely happy about all the changes. I don’t know if it’s the oral vitamin C or the ‘lots-of-fruits-and-vegetables’ diet or what, but I’ve experienced some rather embarrassing and disgusting episodes related to my gut of late. You know, the sort of things that make you not want to spend time in public or in a group of people – you just want to stay home alone. I know I can be rather descriptive at times – this won’t be one of them…. Actually, I’m managing pretty well with it all. It can just be so unpleasant.

I met with my oncologist about 1 ½ weeks ago. She scheduled a chest CT scan for August 8th. I meet with her again August 11th to see what’s happening inside these lungs of mine. At that point, I’ll try to decide about doing more chemo or not. I’m still quite a yo-yo in terms of that decision.

It’s feeling very much like summer here in Kansas City – hot, humid, windy. We’re supposed to see temperatures up around 100 degrees over the weekend. Boda and I finally put up the “pool house” last week. For those who aren’t familiar with this annual ritual, it amounts to a screened tent over the top of a blow up baby pool and a couple of chairs. It’s fabulous when you just want to cool off, lounge around, and not go far from home. I’ve been in it a number of times already.

Our gardens are good. We’re eating fresh green beans and tomatoes these days. The cantaloupe vine is big, but I haven’t seen any flowers, so we may not see many cantaloupe. Oh, well…. My flowers are lovely. The photos now are ones I took of my flowers. It’s nice to have the time to really look up close at the beauty around you – a gift, really.

So, that’s what I know. Thanks for checking in. Take good care.

Christy

Tuesday, June 21, 2005 8:45 AM CDT

Hello.

I have some new information and another plan of action.

In the last update, I mentioned that my CT report indicated "increase in number and size of pulmonary metastases". Well, that seemed so vague.... So, I called the radiologist who read the CT and requested that he review it with me. He very kindly did that just yesterday. It turns out that "multiple nodules" in my case, means about forty (not fourteen.... yes, forty -- YIKES!). Most of those are less than 1 cm (<1/2 inch) in size, but they are scattered throughout both lungs. I say to myself, "This cannot be good." While I'm there looking at my scans with this kind doctor, I ask about other stuff just for fun. He showed me where all my organs are and where my liver cyst is, and my adrenal adenoma, and my sacroiliac insufficiency fractures, and some surgical clips left from my surgeries. It was very interesting. I really enjoyed it. But, still, there are about 40 nodules lurking in my lungs, one the size of a golf ball. That so sucks!!

Last Friday, before I even knew this information, I went to KU to talk with a doctor in their integrative medicine department about their IV vitamin C protocol. They are currently enrolling women with ovarian cancer in this study. Some preliminary information indicates that it can slow tumor growth and sometimes even stop growth or get rid of existing tumors. I don't qualify for the study, but I can receive the same therapy. It's not covered by insurance, but it's available to me. It involves receiving megadoses of IV vitamin C twice a week, as well as taking mega oral supplements (mostly antioxidants). It also means eating no sugar or white bread/rice/etc and eating protein every time I eat anything. The diet sounds the hardest to me. What do I mean by "megadoses"? Well, normally, a person would take maybe 1 gram of vitamin C in a day. I will be getting 75 - 100 grams IV each week, as well as about 15 grams orally. It's A LOT. Anyway, I decided this would be a reasonable route for me to go. It means I'm once again tied to the hospital twice a week for a few hours at a time, but the side effects are generally minimal. In fact, I was told that many people feel better in this protocol. It is recommended that chemotherapy be given during this protocol. I haven't decided what to do about that yet.

Yesterday, I received my first vitamin C infusion, and I started taking all my supplements. So, far, so good. Keep me in your thoughts and prayers and hope that my tumor cells really are foolish enough to take in more vitamin C than they can stand, and that my normal cells are smart enough to just take what they need and pass on the rest.

Enjoy these summer months, take care, and thanks so much for checking in.

Always,

Christy

Thursday, June 9, 2005 10:28 PM CDT

Hi, all.

I know that it’s been a long time since I updated the site. I’ve been feeling good and didn’t really think you’d want to hear about my day to day escapades. Now I have some health news – not such good news – and I’m sort of wishing I’d been telling you all the happy little details of my life the last few weeks. In a nutshell, my travels were good. I loved having company. My garden is doing well and the birds are well fed and very happy.

So, you’re wondering about my health news. I met with Dr. Chapman on May 26th. The only thing I had decided for sure was that I wanted to have another CT scan to see what has changed in the last 3 months. It’s a little silly, but I had even entertained notions that perhaps the tumors were gone. I just wanted to know. So, I had CT scans done last Friday, June 3rd, and I got the results a couple days ago. There are “increased number and size of multiple pulmonary (lung) metastases” since the February scan. The largest tumor has grown from about the size of a large marble to the size of a golf ball. Needless to say, my maybe-it’s-gone bubble was quickly burst.

I thought that knowing the results of the scans would make it easier for me to decide what to do. I was wrong. Nothing is as simple as I’d like it to be. Boda and I are planning to travel sometime this summer or fall – that will be good. In the meantime, do I pursue further treatment to possibly extend my life? And at what physical and emotional and financial cost? Lucky for me, I really do believe it will all work out.

So, that’s where things stand right now. Yes, I’m a bit depressed, and trying very hard to remember that the only thing that’s changed since last weekend is that I have a little more information. I still feel good, so I might as well enjoy it.

More later. Take good care.

Much love,

Christy

Wednesday, April 27, 2005 11:13 PM CDT

Hi all,
Just thought it was time to put something new out here - even if there isn't anything new.

It's a cool, damp week here in Kansas City. It's hard to get in the mindset that summer is on its way when the weather is like this. But the spring flowers - lilacs, tulips, and redbuds - have come and gone. Early summer is on its way.

Christy is currently visiting her brother and sister in Oregon. Hello to them, if they’re reading this. I hope you’re having a great time together.

We’ve been busy with our own version of Spring-cleaning, which has involved trying to rid ourselves of clutter and excess stuff. But in the midst of that, we are also getting some new stuff – grownup living room furniture. Time to retire the futon to the guest room.

When Christy gets back she’ll have an appointment with her doctor again, but I don’t know what that will bring (other than having to deal with the cancer on some level). Mostly we’ve tried to take on the attitude that we’ll just act like everything is fine, until it’s not. I don’t suppose that is much different from how we all live. Denial is a wonderful thing.

Like I said, no news here – just a quick hello.
Thanks for checking in – check out the new photos.
Boda

Thursday, April 7, 2005 8:04 PM CDT

Hello, hello.

Just checking in to let you know that I am enjoying this reprieve from chemotherapy.

Boda and I flew to Seattle for about a week to visit friends (and Boda went to a computer class). It was a lot of fun. We went to the aquarium where they have a baby sea otter – very cute, riding around on mama’s chest. Did you know that they are so buoyant when they’re babies that they can’t dive? And, they really don’t learn how to swim until they’re 2 or 3 months old? They just ride around on mom’s chest or take a break on the shore, nap and eat. They have a lot of fur that helps keep them warm riding around up in the wind – their adult fur starts coming in as they learn to swim and dive. Very very cute.

We also ate good fresh seafood -- yummm. We went to see the tulip fields north of Seattle – lovely. We spent some time at Pike Street Market. While Boda was in class, I played tourist a bit – toured the new downtown library, went for a nice walk around Green Lake. I got to visit with friends who moved from KC a few years ago. All in all, it was a really good trip.

We were only home one day before taking off to Nebraska to see the Sandhill Cranes on their migration north. They spend time on the Platte River resting and eating waste grain from nearby fields (from the previous year). In the evenings, we watched as they flew over to gather at the river amidst beautiful sunsets. The second evening, we also saw a number of deer frolicking and heard owls and turkeys nearby. It was fabulous. Early Monday morning, we went to a blind at Rowe Sanctuary before dawn, and watched as the sun came up and the birds began stirring and flying back to the fields or further on their journey. The estimate was that there were about 100,000 cranes still in the area – the peak is about 350,000 to 400,000. Many had already left and headed north. But, it was great just the way it was. I loved it! Maybe next year, we’ll go a little earlier and see more of the masses of birds.

I met with Dr. Chapman today. She had been to a national conference, but she didn’t learn of any new clinical trials or promising therapies. I have my same options that I had before. I have decided to wait to do any more treatment until after mid-May. I feel good now, and I want to have some nice time in Oregon with my brother and sister. Come the end of May, I’ll see where I’m at, and decide whether or not to pursue the vitamin C therapy and/or one more round of chemotherapy. I see Dr. Chapman again May 26th.

In the meantime, I’ll be working in the garden and flying out to central Oregon. Hope you are enjoying the springtime.

May you be free of fear
May you be happy
May you be well
May you live in peace.

With love,

Christy

Thursday, March 24, 2005 9:57 PM CST

Hello, and thanks for checking in.

There isn’t really any news, but I have been feeling differently lately. It’s like I’m having a lovely reprieve. From the chemo. From the cancer. From the fear surrounding the cancer. I seem to be in a “feel good as long as I feel good” mode – deal with being sick if and when I get sick. I’m trying to worry less about what might happen in the future, and spend more time enjoying what I have right now.

You see, for me, it’s never been the cancer that makes me feel sick – it’s always been the treatment – the chemo, the radiation. So, now, six weeks with no standard treatment, I’m feeling pretty good. I have more energy. I’ve even been able to work for a few hours a couple of days this week – actually doing nursing work, not just paperwork. (I was very tired with sore hips and sore feet after 4 – 5 hours of work, but it still felt good to be there.) And, I am so looking forward to warmer weather and working in my garden.

I really don’t know how long this feeling will last – the fear can creep in so easily. But, I hope to enjoy this reprieve for a very long time.

Enjoy the spring, and take good care.

Always, and with love,

Christy

Tuesday, March 15, 2005 10:39 AM CST

Welcome, and thanks for checking in.

I have been trying to come to some sort of peace with the news about my cancer and the narrowing options for treatment. Physically, I feel good. Emotionally, I feel like I’m on a scary roller coaster. It’s not that much fun. Although I feel just fine during my moments of healthy denial.

I spoke with Dr. Chapman last week on the phone. She didn’t have anything new to offer, but she is going to a gynecologic oncology conference next week and will meet with others who might have other ideas regarding treatment. I meet with her again on April 7th.

I got some information about an alternative therapy being studied at KU, involving mega-dose vitamin C given intravenously (twice a week), along with other oral supplements, and dietary recommendations. It could potentially slow or even stop the growth of the cancer, though it is not expected to get rid it. And, the side effects are generally fairly minimal. It’s something to think about.

As a distraction, Boda recently tripped on a sidewalk (while we were out walking) and broke two of her fingers. She now wears a lovely purple splint with decorative black Velcro strips. We can’t decide if she looks like a professional bowler or some sort of super-hero. She sure is taking this distraction thing seriously!

I’m doing some traveling and enjoying the transition from winter to spring. I even put shorts, a tank top, and sunscreen on Saturday and cleared out a lot of the dead plants in our garden left over from the fall. It felt good. I spent a few days in the Ozarks last week visiting friends – it was a good trip. Next stop, Seattle. Then, a road trip to Nebraska to see the Sandhill cranes. Traveling seems like a good idea these days.

I hope this finds you well and making some fun plans of your own. Take good care.

Christy

Friday, February 25, 2005 11:39 PM CST

Hello, and thanks for checking in.

I had CT scans on Monday of my chest, abdomen and pelvis. Today, I met with Dr. Chapman to find out what the scans showed. The most telling part of the report states: "There has been interval increase in size of the multiple bilateral pulmonary and pleural based nodules." It’s growing. The chemo isn’t killing the cancer cells or even preventing their growth. Heavy sigh…. On the other hand, it hasn’t spread to other organs, and I have no symptoms. I can’t even tell that it’s there.

My options are really not great. There are chemo drugs that I can try, but each round is likely to be less effective. I feel worse with each treatment and it takes me longer to recover. I don't think that I want to continue the chemo drugs. Surgery might be an option. It wouldn't save me, but I might live a few months longer if they removed the largest of the nodules. It’s not really possible to remove all the nodules as they are spread throughout the lung tissue. Surgery would not result in cure, and it might even stir the cancer up. Not knowing if it would give me more time or how much more time it would give me, I'm not sure I want to undergo another major thoracic surgery. Another option is a clinical trial for an immunotherapy drug that targets receptors on the tumor cells, hopefully preventing further growth. Dr. Chapman is going to call and see if I meet criteria. Then, I'll have to decide if I really want to do it. And, finally, I could opt for no treatment and enjoy feeling good for a while. Right now, I don't really know what I want to do.

Other advice included telling me to look in the mirror and ask myself if there's any one thing I want to do before I die. And if there is, go do it now. (Now, that might sound a little harsh, but really, it’s good advice for everyone.) Unfortunately, I'm not sure what that one thing would be. I am going to see the Sandhill Cranes the first part of April up in Nebraska. And, I'm still planning to go to central Oregon towards the end of April to visit my brother and sister -- maybe check out the bird migration there. I think I get the most enjoyment out of the little things I get to do -- taking Daisy (my dog) for a walk.... planting flowers..…. feeding and watching the birds.... doing yoga... baking. Maybe I'm lucky that way.

I will keep on doing acupuncture, and maybe more seriously take the Chinese herbs to boost my own immune system. I'll keep doing yoga, meditating, and getting exercise. Eastern medicine may truly have more to offer than I can really understand. So, don't think that I will sit idly by and wait to die. It may just be time for me to switch gears a little and look at a more gentle holistic approach to having cancer.

My hair is growing back ever so slowly. That will be fun – to see how it grows in – blonde or dark, curly or straight, coarse or soft.

Enjoy the Spring flowers –
Christy

Sunday, February 13, 2005 9:51 PM CST

It is Sunday evening. I spent this last Monday, Tuesday and Wednesday at KU receiving my Cisplatin and Ifosfamide. I felt sicker sooner – nausea and just a sense that my guts might not really be working at all. I seem to have a lot more hot flashes with the chemotherapy, and the first day in the hospital, they hydrate me so well -- and follow it up with mannitol (a diuretic) -- that I’m up peeing constantly. It doesn’t allow for very good sleep. I don’t really know how to explain it all or describe it all. On paper, it doesn’t really seem like that big a deal…..

I was very lucky to have people stay with me much of the time. Emotionally, I do better when people are around. Thanks to everyone who came to see me. I really, really do appreciate it.

I am feeling a bit better now – not quite “good”, but better. I did yoga today and only napped an hour or so. I will have more scans done February 21st, and then meet with my oncologist February 25th to see where to go from here.

In the meantime, the daffodils are beginning to pop their sweet heads up, and spring is just around the corner. Enjoy!

Much love,

Christy

Monday, February 7, 2005 9:05 AM CST

Hi all,
Just a quick update for those of you who come here to check on things.
Christy will be at the hospital this week getting her third round of Ifosfamide/Cisplatin chemo. The first couple rounds went okay, although last time she was feeling pretty icky by the time she came home from the hospital and it took about a week for her to get back to feeling very good. So, she’ll be getting lab tests Monday morning and if all is well, she’ll check into a room and start chemo. After a couple days of different chemicals infusing, she’ll come home sometime Wednesday.
So that’s the plan for this week – infuse the drugs, and then just take things easy.
Thanks for checking in –
Boda

Thursday, January 27, 2005 1:15 PM CST

Hello again. Thanks for checking in.

I am feeling much better than the last time I wrote. If you didn’t read it, well then, don’t worry about it. If you did, then you’ll be glad that I’m better. This cancer thing can definitely be a roller coaster.

I am a little concerned that I don’t really have new pictures for the website. A couple weeks ago, Boda did a little flying thing off the back porch when it was iced over, and she had a great bruise on her thigh. Terri, our chiropractor, said that the last time she saw anything that grand was after someone had been hit by a bus. It was incredible. We do have a couple of good pictures of the bruise, but Boda’s not really up for putting them on the Internet. You’ll just have to use your imaginations.

I’ve a had a nice week. I went to the park with friends and their newly adopted son – he had a grand time on the slides, and even warmed up to the swing on the second trial run. I went in to work for 8 hours yesterday – caught up on some stuff and got a little ahead on some other stuff. And, tomorrow, it might snow! I’m sort of wishing for about 6 inches of snow in about 2 hours, before they let all the kids out of school, so I can have some quality adult sledding time for myself. OK, I guess, I shouldn’t really wish for that much snow in that short a time – erase, erase. Can I still wish for the ‘quality adult sledding time’??

Thanks for checking in.

Christy

P.S. Thanks, Boda, for putting new pictures up!

Saturday, January 22, 2005 9:41 PM CST

Well, I’ve finished chemo treatment #2 of the Ifosfamide and Cisplatin. I was admitted to KU on Tuesday, and came home Thursday around noon. It’s been harder than the first go round. I just feel worse in general, both physically and emotionally. My guts are unhappy; I’ve had headaches; and I’m sooo tired. I could hardly wake up Thursday morning. Then, I slept all Thursday afternoon. Friday morning, I got up at 7 and took a nap between 9 and 11. Today (Saturday), I got up at 9, and then napped from about 11 to 1 pm. Now, that’s a lot of sleeping. Oh, and to top off my physical complaints, I believe I’m a bit constipated (and you thought I’d have diarrhea). You just never know.

On the emotional end, I just don’t like feeling so bad. It brings me closer to the reality that I have cancer. I start to wonder how much treatment is really reasonable. I get scared about dying. I just begin to spiral downwards emotionally, and it’s hard to turn things back around.

I am beginning to feel a little better, I think. It helps having blue skies and sunshine. I wish it wasn’t quite so cold, but then, it is January.

So, take good care. Thanks for checking in.

Christy

Monday, January 10, 2005 5:14 PM CST

Hi, again. The best part of this update is that it will be short.

I’m doing really well. I can eat. I can drink. I have pretty good energy. My blood counts are pretty good. Round one of the new chemo regimen has, at least on the surface, gone very well. Let’s hope those tumor cells are more miserable than I am right now!

Last week, we had an ice storm here in the Midwest. It was quite cold for a number of days, but it was also beautiful (in it’s own way), so I went out in search of some good photo opportunities. Check out the new pictures on the website. Sunday, when I took Daisy out for a walk, it was “raining” under the trees. Everything was melting so quickly that it really felt and sounded like a rainstorm under the trees. I thought it was very cool. I had not experienced anything like that before.

So, I have another week before round #2 and another short stay in the hospital.

I hope this finds you very well.

Sending much love,

Christy

Saturday, January 1, 2005 7:36 PM CST

It’s 2005... Isn’t that just amazing? And, I am feeling ever so much better. Mid-day Thursday to Friday was my worst time. I couldn’t eat or drink without feeling pretty nauseated. Mary Ann came over Thursday afternoon and encouraged Kim (at the cancer center) to arrange for home health to bring out IV fluids. I think that helped a lot. I also slept a lot.

Yesterday evening, we went to friends’ house for the evening. It was relaxing and fun, and I was able to eat much more than I would have thought. (I know. It shouldn’t be about eating, but I am still so grateful to be able to sometimes.) We didn’t stay out late, but I did manage to stay awake until midnight to welcome in the New Year properly.

Today, I went to an open house at the Yoga Gallery. I had it my mind that it would be a relaxed way to see the different types of yoga offered there – maybe eat a few snacks…. In fact, it was a 2-½ hour yoga marathon, much of which I don’t have the flexibility or strength to do. But, of course, I tried and tried and tried….until I was sweating all over my yoga mat, and my legs felt rather jelly-ish. It was in a very crowded and very hot room. I was glad that I couldn’t see myself in the full wall mirrors – not pretty. I felt pretty puny afterwards. I think I really dehydrated myself. I came home and ate some chicken soup and did some more fluids. I’m feeling much better now.

Even as I’m feeling OK and wondering what 2005 will bring, I also find myself unable to truly take in the tragedy and horror people are experiencing in and around the earthquake and tsunami sites. It all seems so unreal. And, yes, so unfair. My wish would be that we somehow provide the aid and hope needed to rebuild lives, and the grace to grieve for those who have died – each in our own way. And, even as I see such a huge tragedy, I know that every minute of every day brings a human tragedy to someone somewhere in the world. Just because we don’t see it in the media doesn’t mean that it isn’t occurring. We all just go on doing the best we can.

So, hang in there, and keep doing your very best. It’s the greatest gift you can give, and no one can ask for any more than that.

I thank you for keeping track of me over the last couple of years. I am grateful for your thoughts, your prayers, for you. I am truly blessed.

Christy

Thursday, December 30, 2004 5:52 PM CST

Hi again,
Well, Christy came home from the hospital on Wednesday as planned. Everything in the hospital went fine and she was sent home at about noon. Her doctor stressed the importance of drinking plenty of water, so as not to get dehydrated. She was feeling pretty good the rest of the day – not great, but okay. She took Daisy for a short walk and we went to the grocery store to get some things that she might like to eat.

Today she went to the hospital for her Neulasta shot (keeps her white blood cell count up and makes her less susceptible to infections). After she got home she wasn’t feeling that great. She didn’t feel like she could drink water at all, because she felt like she’d throw up if she did. Mary Ann came to check on her. She called the doctor’s office and requested that home health come out with IV fluids. The nurse actually wanted Christy to come into the cancer center for the fluids, but since there is a holiday coming up and the cancer center would be closed over the weekend, Mary Ann convinced them that setting Christy up to get fluids at home was a better idea. So, now Christy has some fluids going into her and she’s resting. She still feels nauseous, but she hasn’t gotten sick. I think she’ll be doing a lot of resting and napping – trying to ward off that icky feeling.

The plan is for her to have this chemo treatment every 3 or 4 weeks, depending on how her guts are tolerating it, and how her blood counts are holding up. Chemo doesn’t sound like something that anyone would look forward to having, but Christy usually does. It makes her feel like she’s doing something about the cancer.

It was two years ago today that Christy got her cancer diagnosis. That year we spent our New Year’s Eve at a party with friends – there were tears, but more laughter.

Last New Year’s Eve she was just getting out of the hospital, after a particularly painful bout of C-diff infection. Then we spent New Year’s Day in the emergency room because her port had gotten infected.

So, if this year is spent just laying around the house trying not to throw up – it will be an improvement!

We hope you find a better way of bringing in the New Year!
B.

Monday, December 27, 2004 9:42 PM CST

Hi all,
Just a quick update for those of you who might be checking the website, knowing that Christy was going into the hospital for chemo this week ---

Christy checked into KU this morning, thinking that she would be spending most of the week getting a continuous infusion of chemo drugs, hydration and other meds. As it turns out, she will likely come home on Wednesday. She is getting the Ifosfamide drug in 24 hours, not over the course of 3 days. Prior to that, she is getting the Cisplatin, and after the Ifosfamide she will get a drug to help avoid side effects. So we're hoping that she'll get through by Wednesday. Of course, things always seem to take longer than they should. Even though she checked in at 9:00 a.m., they didn't get anything started until mid-afternoon. She had gotten pre-hydration and other meds, and was just getting started on the Cisplatin at about 7:00 p.m. When I left the hospital she was pretty sleepy (from the Benadryl). I left her in good hands - with Mary Ann watching over her - and came home to take care of things here.

We're hoping that the side effects of this new chemo are no worse than the previous treatments, and that she will be home soon -
Thanks for keeping us in your thoughts -
B.

Monday, December 13, 2004 11:14 PM CST

Hello, and thanks for checking in.

Last Monday, December 6th, I had CT scans done of my chest, belly and pelvis. On Tuesday, I flew to Albuquerque to see my folks for a few days. We had a good visit. One day, we drove to Bosque del Apache (a wildlife refuge south of Albuqerque) to see the sandhill cranes, snow geese and ducks. Amazing to see wetlands and so many birds in the desert. We also spent an evening at the botanic gardens to see what is called “A River of Lights” – fairly spectacular. It was a nice trip.

Today, Boda and I met with Dr. Chapman to get the results from the scans done last week. I did the usual checking in and waiting, and I answered the resident’s questions, and he listened to my heart, lungs and belly. He briefly told me the scan results, and then we waited a little longer to see Dr. Chapman.

The good news is that there are no more nodules in my lungs. The not so good news is that the ones that are there are all a little bit bigger. The bad news is that I now have an enlarged lymph node somewhere under my left clavicle (between the left common carotid and brachiocephalic arteries, in case you’re wondering). Sooooo, the chemotherapy that I’ve been receiving is not preventing the cancer from growing, though it may have slowed the growth, and possibly prevented the growth of new tumors.

Now, I have many choices – too many choices – and none of them seem very appealing.
· I can continue the same treatment, but it’s not stopping cancer growth.
· I can start a new chemotherapy – Dr. Chapman recommended a drug called Ifosfamide (Ifex), which requires that I be hospitalized for 4 – 5 days. I would get the drug through my port-a-cath continuously for about 4 days, along with hydration and a drug to protect my bladder. I would also continue to get cisplatin, which is the primary drug used for cervical cancer, along with other drugs. The theory is that it potentiates the effects of other agents, so while I’ve already been treated with it twice, it may still be effective.
· Dr. Chapman is still very interested in treating my cancer with Avastin – the really expensive drug that my insurance won’t pay for. She gave me forms to complete to apply for funding, so we’ll see how that goes.
· I can also stop treatment if I choose.

Right now, at this moment in time, I think I will try the ifosfamide and cisplatin, and try to get funding for the Avastin. My first treatment will start December 27th, the Monday after Christmas. I’m not looking forward to spending time in the hospital, but I’m also not really ready to stop treatment. If I am unable to get financial assistance for the Avastin, I will probably pay for the treatment myself to see if it works. I’ll get scanned again in about three months.

All in all, it feels like I’ve been ripped from the snug security of denial back into the real possibility that this cancer might be more aggressive than I am. It’s a sucky feeling.

OK, enough of that.

On a brighter note, Boda and I got a Christmas tree tonight and spent a good part of the evening decorating it. We’ve talked about getting a tree for years, and every year, the holiday season would go by, and still no tree (even though, yes it’s true, Boda makes Christmas ornaments for a living). Well, this year, Boda bought lights, and somehow that just made me want a tree. So, voila! we have a lovely Christmas tree. Ponder – our cat – isn’t quite sure about it. Daisy – our dog – couldn’t care less.

So, I will spend the next couple of weeks baking and enjoying the holiday – mailing packages and spending some time with friends. I hope that you will be enjoying the holidays as well.

Take very good care, and be safe in whatever you do.

Much love,

Christy

December 6, 2004

I hope everyone had a really nice Thanksgiving. Thanks to good friends, Mary Ann and Sandy, for having us to their home for dinner. It was excellent and required no preparation on my part.

I was very tired after my last chemo. In fact, it seems like I slept practically the entire weekend after the holiday. Sometimes just rolling over wore me out, and I’d just fall right back to sleep. It’s a little unnerving to be so exhausted. And, in some ways, a little scary to think I might not get my energy back. And, besides the fatigue, I also just didn’t feel very good – had some abdominal pain and lower back pain. I started feeling much better by this last Monday/Tuesday, and now I’m back to pretty much feeling fine.

Today, I had scans of my chest, abdomen and pelvis. I had to drink the nasty contrast, only this time, I did get the kool-aid stuff instead of the thick white crap that makes me gag. I’ll get results next Monday when I see Dr. Chapman.

In the meantime, I’m flying to Albuquerque tomorrow to see my folks for a few days. It’s been a long time since I’ve seen my parents, and even longer since I’ve been there. I’m looking forward to it.

A friend told me that I put incorrect information on the website last time – oops. If you are interested in the CD, “Mud Pies & Sweet Dreams”, please e-mail me using the link below. There is no website. (I don’t know what I was thinking. Sometimes I’m an idiot!)

I finally got tired of little curly hairs all over the house and the car and everywhere else I went, so I decided to get rid of what was left and shaved it off. I'm pretty close to hairless. It's not entirely attractive, but it did put an end to all the little curly wiry hairs scattered about.

There’s not much news from me. I’m doing pretty good. Thanks for checking in.

Take good care. Much love,

Christy

Thursday, November 11, 2004 6:16 PM CST

Golly, I read last week’s update and think, “Huh.. was I feeling that icky??”

I actually had a very good week.
-- I didn’t have any of the severe abdominal or lower back pain that I had after the first chemo. I don’t understand why, but why really isn’t important, is it?
-- My hair is falling out in smaller amounts, and it seems that I might even keep a fair amount of it. It feels very thin to me, but it many people can’t even tell any has fallen out (makes getting a little sympathy a lot harder!).
-- I had a really good visit with my sister who came to see me from Oregon.
-- George Bush is still the president, but I’ve even gotten a little perspective on that.
-- Boda is coming home tomorrow (Friday, November 12th)!! Yeah!!

On top of all of that, I have another week off before my next round of chemo – another week to feel good. It sounds fabulous. My next chemo is scheduled for the week of Thanksgiving – Monday, Tuesday, and Wednesday. Then, I’m planning a trip to Albuquerque to see my folks two weeks after that.

Yesterday, my sister and I went to see the movie, Shall We Dance?. Makes me want to take Ballroom dancing lessons! Maybe I will.

So, thanks for checking in. Check out the photos of Hong Kong. Take very good care.

Much love,

Christy

Wednesday, November 3, 2004 7:07 PM CST

Hello. This is day #3 of chemo cycle #2, and I’m feeling sort of yuk. Besides the poison coursing through my veins, venules, capillaries, and into my cells, it doesn’t help that the weather is gray and cold and rainy. It doesn’t help that my sweetie is far far away. It doesn’t help that Bush won the presidential election. It doesn’t help that when I take a shower, my hair clogs up the drain so bad that the water won’t drain without cleaning it out 2-3 times.

Last week, all my aches and pains and general feeling yuk dissipated from the first chemo round, and I could almost forget that I’d ever felt bad. I went into work a couple times; I went to some friends’ pumpkin carving party and carved two pumpkins for Halloween; I went to folk dancing and danced my little feet off; I spent time playing dominoes with friends, and I just had some pretty normal sort of days. It reminded me that I can get through this.

So, even as I look around and feel rather glum, I have great friends who are spending a great deal of their time hanging out with me during my treatments – Monday was nearly 12 hours long. Tuesday and Wednesday went a little more smoothly – about two hours each day, and I was so groggy from the premedications that I just came home and napped a couple hours. Yesterday, I received a card from a very dear friend, along with a gift that blew me away and touched my heart to the core. Today, I received an e-mail from a friend who is doing missionary type work in Africa with news of amazing people and heart warming generosity to help two girls receive heart surgeries that would have been impossible had she not been there, and had not people been there for her. (That was a horrible summation of an incredible story – you’ll just have to trust me that wonderful things really do happen in this world because a few people really care.)

So, lately I find I am drawn to eastern philosophy – the notion of balance –

To build up, dismantle first
To expand, contract first
To attain clarity, allow confusion
To become civilized, first live in the world.

The balance of all things is in their opposites
The truth points in both directions
Thus the clenched fist holds weakness within
And the open hand offers the hidden power of suns.

Thanks for checking out the website and for writing in this journal or sending me e-mails. It really does brighten my days and reminds me that I’m not all alone, that I’m loved and supported. Some days, that makes all the difference.

Take good care.

Christy

Sunday, October 24, 2004 5:40 PM CDT

Hi again,
Just a quick update for those of you looking for “news”.
It was a dreary, damp week, but it’s been a beautiful autumn weekend – I hope those of you in the area were able to enjoy it. We spent most of the dreary week attempting to rid our house of clutter. There’s just too much “stuff”. It became quite a tedious process when it came down to sifting through collections of seashells. There were numerous little bowls and jars of treasures from different vacations. Most of them will be scattered in the garden and only those that made the cut will reside in the house from now on.

Christy is doing fine. She has another week before she has chemo again, and she’s feeling pretty good. She still has abdominal pain and lower back pain – she’s learned to live with it. The occasional narcotic helps with that. They will do a bone scan tomorrow.

I’m trying to get ready for my trip to Hong Kong. I’m nervous about the long flight, the food, and leaving home for two weeks. The two weeks after Christy’s chemo seem to be pretty tough for her, and I’m worried that I won’t be here. Hopefully it won’t be any worse than last time.

There’s really not much news from here – just felt a need to update the site. I wish we could include more photos, but were limited to three at a time.

Thanks for checking in –
Boda

P.S. Don’t be alarmed that Christy is not doing the “authoring”. She’s doing fine – and generally feeling pretty good. I just happen to be the one who’s felt like writing lately, and I have to admit – I’m a computer nerd.

Saturday, October 16, 2004 10:38 PM CDT

Hi again,
I thought I should put an update here, for those of you who might be checking to see how things are going.
Christy started her chemo Monday. We were at the treatment center from about 2:00 p.m. until 10:00 p.m. She had fluids and some pre-meds (anti-nausea drugs and such) and then had the chemo drugs – Cisplatin and Topotecan – then more fluids, and a shot of Procrit (to increase red blood cells). It was a long day, but things went well, we had a great nurse, and I got a lot of work done on my laptop. Dr. Chapman came by to check on Christy while we were there. Tuesday and Wednesday she went back to the cancer center for additional doses of Topotecan. Those were relatively short days – only two or three hours. The anti-nausea drugs are different than what she got last year – and they seem to work pretty well. Last year she took Zofran – this year she gets Aloxi and Emend. On Thursday it was back to the treatment center for a shot of Neulasta – to help build up her white blood cell count.
She felt pretty well, until the last couple days. She’s had some pretty bad abdominal cramping – not sure what’s causing it – her guts, bladder, or what. The Neulasta also causes some bone and muscle pain – so she’s been pretty uncomfortable, and not sure what to do with herself. Hopefully she’ll feel better soon so that she can have a couple good weeks before she has to go through it again.
In two weeks she’ll be having her second treatment, and I’ll be in Hong Kong (for work). I’m worried – but there are lots of folks here to look after her and her sister will be visiting for a week while I’m gone.
Enjoy the cool fall weather – Thanks for checking in –
Boda

Wednesday, October 6, 2004 10:44 PM CDT

We’re back from the trip to the Mayo Clinic – for a second opinion on this whole cancer thing. We had two clear, sunny days on the road - two beautiful, cool days in Rochester - several hours inside the bright, shiny Mayo Clinic – and in a few dark moments we found out that there is no magic “fix” for this cancer. Not even within the marble halls of Mayo.

Mayo is very efficient - Christy got a schedule of her appointments for the two days. She had blood work, chest x-ray, CT scan and a doctor's consultation. Everything was on time, or earlier than scheduled. The doctor there reviewed Christy’s case, did an exam, and discussed treatment options. He told us that he knows of no other research going on, or clinical trial, or treatment. He thinks Christy is getting good care here in KC and her treatment options would be no different anywhere else. He did not see Avastin as a good option, as it has terrible side effects (bleeding, perforated colon!!). He did think that she should go ahead with the chemo treatments that Dr. Chapman has proposed. Maybe there will be a good response, as the nodules in her lungs are still relatively small. He did not see any reason for any further surgery, as there are many tiny nodules that would be undetected. His words for her situation – “between a rock and a hard place”. So, it seems that the reason for the trip was just to find out for sure that all options were covered – to convince us that what we’re getting here is the best that we can get.

Monday Christy will start chemo treatment. The plan is for chemo every three weeks – a total of 6 treatments. After 3 treatments they will do a CT and see how things look. Whether or not they would continue with treatment would depend on how Christy is tolerating the chemo and how the cancer is responding. Right now she feels great. Sometimes it's hard to believe that there is anything wrong at all. Certainly not anything as serious as this. This is right up there in the "bad dream" category.

Even with the not-so-encouraging news from Mayo, it was still good to get out and travel. We laughed so hard while singing along to golden oldies that my face hurt. We saw a couple buildings in the middle of small town Iowa that were designed by Frank Lloyd Wright. I got a not-so-great clip at Great Clips – only reinforcing my do-it-yourself haircare philosophy. And we spent some time at the Spam Museum (not the junk emails, the “meat”) – very entertaining – with a great gift shop. And, of course, Mayo Clinic, where we spent most of our time, was just amazing - so big, but beautiful and efficient.

Here’s hoping you’re finding some entertainment in your life,
Boda

Thursday, September 30, 2004 10:35 PM CDT

Hello, hello. When I last wrote, I felt that I had a number of possible options:
* vaccine trial in Arkansas – I don’t meet criteria
* access to Avastin – insurance won’t pay
* out-of-pocket pay for Avastin – costs $10,000/dose – recommended every two weeks (YIKES!)
* possible use of drug called Iressa if CD117 marker positive – it’s negative
* obtain 2nd opinion – earliest appointment at Mayo October 26th.
* Start chemo treatments before going for 2nd opinion – scheduled to start October 11th – after trip to Albuquerque to visit family.

It seemed like one little bubble after another just popped in my face. My medical karma seemed to be gone. Crying came easy.

Then, Tuesday, I got a call from the Mayo Clinic asking if I’d like to have an earlier appointment – “but I thought October 26th was the earliest appointment”. As it turns out, they can see me just about any week in October. So, I decided to go next week. I’m thinking earlier is better.

They told me all the things I need to gather together to bring with me – operative reports, radiology films and reports (x-rays, CT scans, PET scan, bone scan, etc), pathology slides and reports since this medical adventure began back in 2002, chemo & radiation reports, and a summary of care from Dr. Chapman. So, I got on the phone and started calling any department at KU Medical Center I could think of that might have something I might need. Each day since then, I’ve gone to KU and picked up whatever was ready and asked about whatever wasn’t. In the evenings, I sort through it all. I’m getting close now. Hopefully, I’ll have everything I need when I go. I don’t really know what to expect. I hope it helps me make some decisions and move on with this. I don’t know if it will change my planned chemo dates or not…. “just go with the flow”.

Unfortunately, this trip to Minnesota means I’m postponing a trip to Albuquerque to see my family. I hope to go there later in the fall.

Thanks to Boda for changing pictures on the website – there are about 507 more photos from our vacation. Stay tuned!

Except for this cancer, my life is good. I planted hydrangeas today. We went to the Plaza Art Fair and spent time with friends last weekend. I beat Mike (my neighbor) at ping pong (a rare occurrence). I’m really liking yoga and tai chi. Our hummingbirds are back. The weather here is beautiful. What can I say?

Enjoy your weekend. Thanks for checking in and keeping me in your thoughts/hearts.

Christy

Thursday, September 23, 2004 7:16 PM CDT

Thanks to all of you who have visited this website. I’m amazed. And thanks to all who have entered notes in the guest book. It’s really a lot of fun for me to check it out each day to see what’s new!

So, today was my meeting with Dr. Chapman regarding the marker/receptor tests, my chest CT (from yesterday) and possible places to go for a second opinion…. There are still marker/receptor tests pending (not yet complete). The chest CT scan showed no tumor growth in my right lung (where they had taken out everything that seemed abnormal), and only the three previously seen nodules in my left lung. Those were a little bigger, but are still fairly small.

Dr. Chapman had reviewed all of the clinical trials relating to advanced cervical cancer. I had read about many of them on the internet. I don’t qualify for most of them, mostly because of the type of cancer that I have. Some are related to comparing drug regimens for effectiveness. Dr. Chapman can access most of those drugs and she feels it is more in my interest to decide which ones to use, rather than enter a study where I don’t really have a choice about which drugs I get. She is still checking with a doctor in Arkansas about vaccine studies being done there. She is not very hopeful that I can be included in that trial since he works mostly with cervical squamous cell carcinoma and I have adenocarcinoma. Those trials would also require that I go there for treatment – something to consider should it become an option. Her recommendation for a second opinion was the Mayo Clinic.

In terms of treatment, she recommends aggressive chemotherapy coupled with a drug called Avastin. Avastin is an angiogenesis inhibitor. “What the hell does that mean?” you might ask. Well, angiogenesis inhibitors prevent the formation of new blood vessels, including those that surround and supply cancer cells with the oxygen and nutrients they need to survive and grow. By taking away the blood supply, angiogenesis inhibitors may reduce tumor cell growth and cause cancerous tumors to grow more slowly or to become smaller. It doesn’t actually kill the cancer cells, but it prevents them from multiplying since they can’t provide a good blood supply to maintain the cancer. Unfortunately, I don’t qualify for the clinical trial using Avastin. So, she is trying to convince my insurance company to pay for the drug, which is not considered ‘standard treatment’ for cervical cancer, but is used for other adenocarcinomas. I guess we just have to wait and see.

I think I’ve thrown out enough medical jargon for one update. There will be no test over this material. Hopefully, I’ll hear more from Dr. Chapman the first of next week and decide where to go for a second opinion.

Enjoy your weekend. Thanks for checking in and keeping me in your thoughts/hearts.

Christy

Monday, September 20, 2004 9:20 PM CDT

Hi. And thanks for visiting this web page. A lot has happened in the last month, leaving me feeling a little bit nuts. To start this journal, I thought I would just put in a little history of the last month or so. Some of it will be old news to some of you…

I was doing great – working, gardening, doing my weights, eating almost anything I wanted – and then one day, I had some vaginal bleeding. Some tests were run just to be sure everything was OK, including a PAP test, blood work and a CT scan of my chest, abdomen and pelvis. The CT scan showed multiple pulmonary (lung)nodules, both lungs, that weren’t there last February. So, what does that have to do with vaginal bleeding, you might ask… go figure.

So, I was referred to see a thoracic (chest) surgeon about a biopsy. It took two weeks to get in to see him and another week to get the surgery scheduled. The surgeon tried to do the biopsy thorascopically (making little incisions and collecting the sample with a camera and little nippers), but was unable to get to the nodules, so he ended up cutting my chest open, spreading my ribs and finding the nodules and a couple lymph nodes. They did some tests in the operating room and it turned out that the nodules were “my” cancer, so they put in another port-a-cath and closed me up. I spent three days in the hospital and then went home on narcotics (you know, morphine and percocet). The tissue samples obtained were sent for special staining and testing to help determine what sort of treatment might work.

The next week, while I was recovering, Boda and I talked about getting out of town for a week or so. (Our planned vacation was pre-empted by surgery.) Not being particularly spontaneous about vacations, we had quite a time with the whole thing. I have always wanted to go to the Canadian Rockies around Banff and Jasper, so one night Boda got on the internet and booked airplane tickets, a condo and a car. Three days later, we boarded the plane and were off to Canada for a week. It was fabulous. I am so glad that we went. It’s incredibly beautiful there. We hiked, walked on a glacier, ate chips and cookies, drank wine and took a thousand pictures. What more can you ask for on vacation?

I had an appointment to find out about the pathology results last Thursday. When I got there, I found out that the tests had never been ordered. “Excuse me, what did you say???” Some of the tests could still be done, so I have another appointment this coming Thursday. I have also decided to get a second opinion, and after talking with Dr. Piehler (my thoracic surgeon) and Dr. Chapman, I am thinking I will go to a center where they are doing clinical trials re: treatment of metastatic cervical adenocarcinoma ("my" cancer). Dr. Chapman is getting more information for me about where that might be. It may open up some doors for me that I would not otherwise find out about…or not. We will see.

Thanks for visiting this website. Let me know what you think. Take good care.

Much love,

Christy

Monday, September 20, 2004 7:49 PM CDT

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