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Wednesday, February 8, 2006 1:07 PM CST
I AM STILL ENJOYING MY HOME LIFE, ALTHOUGH I HAVE NOT GAINED MUCH STREGTH OR ENERGY WEIGHT! MY COUNTS ALL SEE TO BE FINE. PAM - I MISS YOU ALOT, YOU HAVE MEANT SO MUCH TO ME THRU THIS. I WISH I COULD OVER WHAT YOU HAVE.I HAVE A CARETAKER THAT WILL BE HERE UNTIL END OF MARCH SO I NEED TO GET STRONGER BEFORE THEN AND ONLY I CAN DO THAT. I PRAY FOR ALL THAT NEED IT BEFORE ME. I KNOW GOD I WITH US. BLESS YOU ALL'
Saturday, January 21, 2006 12:34 AM CST
Its noon here in Minnesota and I am trying to get some energy up to take a bath. The sun is shining and I am so happy to be connected to all my friends again. Thank you!Well here it goes, off to the tub.
Saturday, January 14, 2006 1:46 PM CST
HI, ITS finally me updating this. Finally am at home but very very weak. I love you all for keeping up with and for our your prayers and goodwishes.The doctors feel fortunate that I am here and so I AM I. my email was wiped out and not working at the time but wanted to check in with everyone who has been so kind. I wish you all the best and will continue to update this when I can. SMILE!!!
Friday, December 9, 2005 12:20 AM CST
Happy Holidays Everyone! It is with great joy that we announce to you all that Doreen has been given a release from Fairview Medical Center to go home to Rochester and her own home. She will be attending the BMT clinic in Mpls approx once a week for a time. She continues to gain strength daily and will be responsible for her own care,with limited assistance from her son and friends.
I will be going home to San Diego....it has been a long, arduous journey filled with many emotions and hard work, great medical care and lots of support from friends, family, and new acquaintances. Doreen still has work ahead of her to rebuild her life with her new immune system and carefully guard her health with lots of consideration for bumps that can appear in her road to a complete recovery.
I continue to thank everyone that has participated in this process.....our emotional supporters, friends, forgive me if I leave anyone out..you have all been my very own angels in helping to get Doreen through this life-changing event.
I wish you all Happy & Blessed Holidays and good health for the New Year.
Love, Margy & Doreen
Wednesday, November 30, 2005 7:28 PM CST
Dear Friends,
We are at day +106, and Doreen is doing very good. She is making plateletes on her own, and has not had any blood products since the day she was released from the hospital almost 2 weeks ago. All other counts are up and her WBC were 86000 yesterday. She did have an unfortuneate fall on her way out of the hospital yesterday, she slipped in a handicapped exit and fractured the base of her hand below her little finger. She is in a temporary cast until she is seen by the orthopedic hand surgeon. Can you believe it? She is telling everyone that I pushed her!! We did laugh a bit during our 3 hours in the emergency room...we decided that she must be paying back some serious karma from another lifetime.
She is starting to regain an appetite. I feel as if I am force feeding something for the upcoming xmas feast. When she gains more weight and gets off the IV daily nutrition, they will talk about release from the medical center here in Mpls, and allow her to do any outpatient work at Mayo in Rochester.
It has been an incredible ordeal...she still has somewhat of a way to travel. She must remain vigilant and concerned for her own care in the upcoming months. She must work to regain the strength she has lost and be patient with slow progress.
Thank you everyone for standing by with all your thoughts, good wishes, and prayers for so long.
Love, Margy & Doreen
Friday, November 25, 2005 12:43 AM CST
Hi..hope you all had a great Thanksgiving w/ friends & family. The Women's Auxillary from Fairview Hospital brought each family that is here on long term an entire Thanksgiving dinner....a 12 lb Butterball pre-cooked bird and all the trimmings. Of course Doreen isn't that far along with her recovery dining, so we froze it all for future use. We enjoyed a quiet day of napping and watching football, not unlike the rest of you, I'm sure.
Doreen is doing "good"..exact words from her cord blood Dr. and they do not use those words freely. Her functions are starting to level out, her blood counts have been consistantly good..she has not needed any blood products for over a week, her marrow is producing some on its own, and they are not needing to see her daily at the outpatient clinic. The GVHD is still a concern but under contol at the momoent.
We still remain cautiously optimistic as every day is a new day in this period of recovery....in other words, boring is good for her. We still need your prayers and energy, so stick with us.
Thanks for checking in, Margy & Doreen
Tuesday, November 22, 2005 9:10 AM CST
Hello Thrill Seekers...hope this finds everyone anticipating a Thanksgiving with family or friends.
Doreen is enjoying life in an easy chair with me behind her with a big whip....I think I can safely say that she is slowly edging her way towards recovery at last. The medical team says she has a way to go before they can consider releasing her from the U of M to go home to her own house in Rochester. If she continues on the upward path she is on, barring no surprise infections, etc. she has at least another 4-6 weeks under their supervision. Clinic visits every few days for labs, any tests they feel necessary, and blood products as needed. Presently, her counts have been so good that she hasn't needed any red blood or platelets. The continuing concern is, of course, the GVHD, which, while under control presently, is a persistant threat.
She is being infused at home with nourishment and a heavy-duty anti-biotic that they recently dropped down from 2 x day to once a day, so we feel she is making good progress in that department. She is starting to eat small amounts, and excercises daily for short periods..that's where I come in with the whip, and if you know Doreen, even that doesn't work.
Thanks for hanging in there with us..we wish you all Happy Thanksgiving.
Margy & Doreen
Wednesday, November 16, 2005 8:23 PM CST
Hi People,
Doreen will be released tomorrow, Thurs Nov 17 from the hospital. We face this with joy and trepidation as she still has a road to travel. She is on a diet of clear foods, but able to keep everything down so far. She did go crazy with chocolate milk which caused her a bit of stomach distress, but is slowing down on that item for awhile. She will be receiving liquid nourishment only at nightime, and will continue on a few IV meds that will be given on a small at-home unit, and she will be monitored several times a day for insulin levels that have been high due to the heavy steroid/prednisone use to combat her GVHD. I think they will give me an honerary degree in home nursing upon leaving. She will continue to be monitored at the Mpsl outpatient clinic. Currently she is at day +92 post transplant.
We remain "cautiously optimistic".....Margy & Doreen
Sunday, November 13, 2005 8:13 PM CST
Hi Friends,
It is with cautious optimism that I say Doreen is doing better..it is truly a day by day ordeal. She has done increasingly better all week, although the medical staff did not think she was ready to be released from the hospital until her strength has improved, she is onto a total regimen of oral medications (off all IV meds), and is eating. These goals are being met slowly and we are hopeful that she will continue to gain strength and energy so she can be released soon. She has had day passes all week for several hours, and I am behind her with a whip, urging her to walk and do more activity constantly. This has had a very positive effect on her progress.
We appreciate all your thoughts and messages.
PS Nov 14 is Doreen's birthday!!
With Love, Margy & Doreen
Tuesday, November 8, 2005 9:52 AM CST
Hi Everyone...Margy here. We have been without email capacity for some time, so I will try to bring you up to date on Doreen's condition.
She has been back in the hospital since approx Sept 20th fighting Grade 4 GVHD. She has been extremely sick, and alternates between good and bad days. We are encouraged that the last medicine they have given her is working. Her counts are good, her transplant is 100% engrafted, and the most recent bone marrow biopsy shows NO MDS or any cancer blasts. She is very weak, but working with Phys Therapy daily. This week, they are weaning her off IV meds, trying to make the change over to oral, have given her daily passes to get out of the hospital for several hours, and hope to discharge here this Fri Nov 11 to the apt she has near the hospital.
She will be going to "clinic" daily for check ups and hopefully by day +100, we will be able to leave Minneapolis and return to Rochester where she will continue outpatient treatment at Mayo...Nov 26
Thank you all for your interest, she still needs your prayers and good thoughts,
Margy & Doreen
Sunday, October 9, 2005 2:46 PM CDT
Hi Friends...Margy here for Doreen.
Doreen is still a guest in the Fairview Hospital battling intense intestinal distress. Her biospsy last week revealed GVHD of the stomach and rectum. The vomiting has gone, but the other end is still fighting. It is truly a day by day journey. The great news is she is 100% engrafted, so the cord blood transplant part of this ordeal was a success. We never realized the aftermath would be so difficult. The team here at U of M is so on top of every aspect of the treatment, they continue to adjust meds and treatment daily..however, I must stress to all of you going through this same ordeal, that our patients need an advocate that can be their eyes, ears, and mouth, a mindreader with an aggressive personality that watches, listens, and is not afraid to ask questions of anyone that is involved with your patient...sometimes it even involves being ugly...as a caregiver, you must be the one that will fight for the voice that cannot...AND, I think we should all have our own uniform..just kidding.
I am, at this point, optimistic that Doreen will make it through this.
Thank you all for your continued support,
Margy & Doreen
Thursday, September 29, 2005 2:35 PM CDT
Hello...Margy again w/ a brief Doreen update.
Doreen was admitted to the hospital again this morning for a short "spa" stay in an attempt to get her HVGD under control. She has a rash from then neck down, and it also seems to be the culprit in her inability to keep any food, her meds, any liquids down. Otherwise, all other counts pertaining to her condition are good. For those of you that are involved in this treatment or something similar, you know that a bit of HVGD is a good thing, so that is where Doreen is at this point. They put her on IV steroids this morning, in addition to the topical creams. Already, there is a visible difference in both her skin and her overall physical & mental condition. She asked me to go get her an ice cream shake, which is a great sign since she hasn't wanted anything to eat in dayz....no matter WHAT I suggested! We both feel this was a good move towards her total recovery..day +48 and still hangin' in there.
Thanks for visiting....Margy & Doreen
Tuesday, September 27, 2005 6:38 PM CDT
Hi Friends, Margy here with a Doreen update.
Today, the only complaint she has is the on-going nausea. Otherwise, her WBC is up to 4.5 and hemoglobin at 11.1, so she is doing good. She has daily appt at the MBT clinic where she has counts, tests etc. and any adjustments to her meds as needed....the staff is awesome and they seem to be so on top of every aspect of her treatment.
They do suspect a bit of GVHD, so they biopsied her skin today and will deal with that when the results come in Friday. It could be the culprit in the rampant nausea.
The gave her a 2-day reprieve from her daily clinic routine, so that speaks for how well she is doing presently! I make it sound as if she is doing jumping jacks, but she is still very weak and whiney....thanks for your continuing interest, suppport and good thoughts.
Margy & Whiney "Weenie
Thursday, September 22, 2005 5:00 PM CDT
I actually had my doubts but on Monday morning, the doctor asked if I wanted to go home now! yes! I was out by 400 and into the apartment that my sister is staying in with me.I think the very best part of that is not having nurses, drs, etc coming in every 2 to 4 hours day and night. The IV pole was another pain! I wonder how long before I get my strength back. I walk a short distanst and then have to sit and catch my breath. I am developing some skin GVHD but its too early for them to biopsy. It is treatable which is good news! So life is looking up for the time being. God has given me another chance. Thank you all so much for the support and prayers!
Sunday, September 18, 2005 3:59 PM CDT
Greetings! Today is day +33, WBC is up to 2.5 and neutrophils at 1.6 for 4th consecutive day so it looks as if Doreen will be released either Mon Sep19 or Tues.
She has been outside for walks 2 days in a row.
Now comes the long walk home....clinic visits daily for blood work, etc., so we will be staying in the apt several blocks from the hospital. If the weather continues to be fabulous like it has been, she will attempt to walk this in order to build up her strength.
So, today, while we are both encouraged and ecstatic to get out of this wee room and breathe fresh air, she knows that every day will continue to be a challenge.
Keep the good energy and prayers coming at her!
Sincerely, Margy & Doreen
Thursday, September 15, 2005 1:17 PM CDT
Hi Friends...Margy again, Doreen is just getting lazy!!!
We are encouraged with Doreen's progress in the past week.
Her WBC count is up to .9 and neutrophil count is 400. When the neutrophil goes to 500 and stays that way for 2 consecutive days, then she can be released from the hospital to her apt that she has taken directly across from the hospital. That will allow her to make her daily visits to the clinic for daily blood tests, etc.
The big news today is her Dr wants her to start walking the halls!! She has been in isolation in a very small hospital room since Aug 4, so it is a huge step. Now, together, we can start wreaking havoc on floor 4B..it's a whole new world!!
Thanks for checking up on her....she has used all your thoughts & prayers as energy to move forward in this battle. Margy & Doreen
Saturday, September 10, 2005 10:45 AM CDT
I have lost track of the day it is. They all seem the same after a while. My counts have only reached .03. The doctor would like to see these going up much faster. I had a bone marrow last week and will have another one next week to check progress. They increased the growth factor and hoped that it would show better results in my biopsy. So far, its been quite a long journal and I keep my fingers crossed that it will be over soon. love and prayers.
Wednesday, September 7, 2005 5:50 PM CDT
The drs. learned that the one of many drugs that I am on was causing the jaundice and feel they have redsolved that by changing some of the drugs. Still very sick to my stomach. they are starting me on TPN because of my appetite. Yesterday I had my BMB and it showed nothing is going on yet. not good news and they will start me stronger drugs to see if they can get these cord bloods to get stimulated. yes, still going crazy in this this little room. love you all and special hugs to you mark.
Friday, September 2, 2005 2:29 PM CDT
Hi everyone, this is Doreen's sister, Margy, updating her site. Today is day +17.. Doreen is doing ok, just lethargic and not too interested in writing at the moment. She has had several nights of fevers, her WBC is still holding at .2, and her combination of meds is being looked at to see if perhaps the slight jaundice she is experiencing is being caused by one that is too strong etc. They continue to monitor her med intake to ensure the combination is really working for her..it's like roulette! She's a bit down mentally, but being cooped up in a very small room for this long and not showing any immediate signs of complete recovery would make anyone antsy...and we all know how patient Doreen is...NOT!!!
Thank-you all for your continued prayers, thoughts, and support. Margy & Doreen
Tuesday, August 30, 2005 5:49 PM CDT
I lost track what day it is.. but each day consists of more tests and different tests. no mouth sores which is good. starting to get my appetite back. no more news other than all the studuents are moving in on campus. love you mark and everyone supporting me through this journey!
Saturday, August 27, 2005 2:33 PM CDT
Day +11. I am doing well. saw a harley pass by, shorts and tshirt so it must be warm out.All the college kids are moving in this weekend. Alot to watch anyway. Everyone morning I ask the dr.for a pass to go for a walk - he always says no. they are very protective my WBC is .01, so i will be telllig you went it gets to 0.5 where I will have some freedom. have a GREAT weekend!
Tuesday, August 23, 2005 9:01 PM CDT
Day +7. There are so many thoughts going on in my mind that I just wanted to share them. This has not been easy but for those that have died recently of GVHD after the transplant, you are the brave ones. I have an internal fight going on in my head day after day after day and fortunately there are many on my side. How can anyone ever thank people that take your dogs in and take care of them like you would, knowing how much they mean to you. I could not have been as well now as I am without my sister here with me. Long, boring days for her but the bond we have I know will never be broken. My brother here for me at the start when I cried and cried before going into the hospital at the doorway. Just could not have done it. Sometimes I don't know if people really know how lucky they are with what they have. and maybe knowing me a bit more has had you look at yourself and say thank you to all your friends and to God for watching out for you. Love you all... hugs Mark... Doreen
Monday, August 22, 2005 5:23 PM CDT
Day +6 I think....Everyday is like the last but thank God for feeling well physically. The doctor said his last day in here is the 31st and he is taking me with him. If only I could Eat!. They are feeding me fat bags, I feel like a barn animal. Today we squeezed a treadmill in here, the doctor thought it would be a good idea since the days go by so slow and exercise helps your recovery process. My son went back to school and got all moved in. Seems like life moves on no matter where you are. Every night I say my prayers, I know they help and I thank you for all of yours. Love and good health, laughter to all of you. Doreen
Sunday, August 21, 2005 2:14 PM CDT
Still hanging out at the hospital. Days are so long. They decided to feed through a tube even though I have been able to keep some food down. It has no taste and thinking of it makes me feel terrible. They want to make sure I am getting enough vitamins, fat content, etc. So I continue to play a waiting game for my counts to come up which they have not yet. Yet, I am thankful for feeling as good as I do and for all of you that keep me going! Love you mark!
Friday, August 19, 2005 7:16 AM CDT
I have had a few tough tough days but this morning as I get up, I am hoping it will start to turn around. I could not keep anything down so I cannot eat. They tried many different drugs with nothing working. Not a big deal they are saying but if no breakfast this morning they will feed me through the IV. The nauseasness can be common and it may last awhile. My sister has been here with me and during this and honestly, without her, I wonder if I could have made it. Thank you for all the cards! Even from Sadie! Really made my morning to see those when I got up. Love to all- Doreen
Tuesday, August 16, 2005 7:36 PM CDT
Today was the big day. At 2:30, they brought the small bag of cord blood in and administered it through my hickman in less than 7 minutes. The 2nd bag of cord blood took about 12 minutes. The faster they get it in, the better as the cells are more active. Feeling fine after napping most of the day. Now it is just a waiting game to ensure my counts start coming up and my body does not reject the new cells. I appreciate everyones prayers and calls today. This is the beginning of a new life! Good night everyone.... love you Mark!
Tuesday, August 16, 2005 6:19 AM CDT
Day -1 came and went. Seems likes I am always tired but hanging in there without becoming too sick. I woke up this morning knowing that today was the day. They expect the cells for the transplant around 1:30 p.m. I pray that my body accepts them and this will be my cure. I am tired of being sick and ready to move on. Please say a small prayer for me today on this important day. I love you Mark...
Sunday, August 14, 2005 2:33 PM CDT
Sunday -day 2... I have been getting my daily doses of chemo. Flurdabine or something like that? Tomorrow is actually a day that I will be able to leave my room for the grand finale which will be 15 minutes of total body radiation. I was a bit nervous about it but I guess its really nothing according to the doctor. The idea of more crap into my body is what bothers me. Feeling good today. Had good friends visit this weekend. It really helps break of the day to be with people I love and care about. My sister arrived today and I am just waiting for her to come! She promised me a DQ!. Honestly, the food here is BAD. They will let you order in from some of the little restaurants nearby that deliver but soon the dr. seems to think that my appetite will not be the best and I can sense that already. Where is that Antivan??? Love and best of Health to all! I love you Mark....
Saturday, August 13, 2005 9:22 AM CDT
DAY -3. Its also the weekend and it looks beautiful out! Should I say I least have a window? And I have made it this far. I am still so lonely for my friends, my son, my home, the fresh air, my puppies, I could go on and on. But lets look at the bright side, I am going to beat this thing and LIVE LONG. I will someday have grandchildren, I will garden, ride my bike, love more, laugh more. They are still pumping me full of so many different drugs to make sure this works. It really is so amazing what your body can withstand. A miracle really. I had my last dose of ATG, with I did find out is horse serum!! it is suppose to help with rejection of the cord blood. Thanks everyone for keeping up with me... MARK I LOVE YOU!
Friday, August 12, 2005 9:30 AM CDT
Wow -4 already. My brother left late last night. Lots of tears on my end. I really love him and it gave us so much time together to get to know each other again. He is the best. I will miss him. Today is a good day. If I had one small wish it would be to open the window and let some fresh air in. It hard to be confined to a small room 24x7. I have one more dose of ATG.. This is a drug that has been giving me chills and a fever. I will have to look it up on the web to see what it really is and what is does. By the way go VIKINGS tonight! Can't wait to sit and watch them. Such little things to make a person happy. love to you all. miss you mark and love you
! Doreen
Wednesday, August 10, 2005 2:01 PM CDT
Hey - here I am... see I am just not all talk. I finally made it here. This is the countdown. They call it day -6. Day 0, on tuesday, the 16th will be transplant. A new birthday is what they say. Today I received my first big dose of Cytoxin, a rather potent chemo. I felt it right away. My brother wants to rename it to Tequila chemo! Perfect name for it! I will not let it take me under! My son left today. Yes, I cried and cried. Love him and love my brother for being here. They stayed until the 2 hours of the chemo were up. They kept my mind off of it. What goofs. I love them so much! Pat took Mark home, he leaves for school on the 20th, Pat will be back tonight. Thank God. I cannot leave this room, not even to Walk the floors. I would be willing to bet prison is nicer and the food is better? They prohibit cell phones, so my number to my room is 612-273-0201. I am at the fairview hospital at the university of Minnesota. I welcome any hellos, thoughts, prayers, chocolate, hehehe... I will get through this. Its going to be a LONG road and I am told I will be sick. Dang! Thank you all for being here with me in your heart and soul. LOVE YOU ALL.... KISSES TO MY DOGS GUYS!
Tuesday, August 9, 2005 3:35 PM CDT This morning I checked into my hospital room. Very very small which really depressed me. I had several doctors come and talk with me and check my vital signs. They will start the IV fluids tonight and the cytoxom. the nasty chemo in the morning. One of the head doctors, Claudio came in and after the stress of moving in there, etc, I started crying. He asked me if this is what I really wanted to do. After talking to him for quite awhile, he made me feel like I little choice if I wanted a chance to live. He guessed no more than 10 years when I tried to pin him down to my odds if I did nothing. Such a hard thing to be happening, hard to understand, wonder if I ever will. Very tired today, I have been spending the day out of the hospital with my brother and my son. Went for a nice meal and walked around Dinkytown, which is the universitys spot for the students to hang out. Once I get my computer signed on im my room, I will try to keep everyone updated. Please keep praying for me, I want and need to get through this. I will be hooked up to an IV for the remaining time in the hospital. Please send your prayers, your laughter and your love..... Love to all Doreen Monday, August 8, 2005 4:14 PM CDT It's a go for tomorrow. I need to be there by 9:00 a.m. for admission. They will start the first dose of chemo at midnight and the chemo will continue until next tuesday which will be the transplant date. (August 16). I cannot even begin to tell you the emotions that I am going through right now. The doctor looked at my burns and decided he will have a burn unit take care of those, he does not want to put this off any longer. As he told me bluntly, MDS is a dangerous disease and you will not live without the transplant. He also gave me percentages of survival of the transplant and percentages of getting critical gvhd. I do not want to to into those right now. I just want to get through this. Please pray that I have strength to do this.. love to all, Doreen Sunday, August 7 8:50 pm Tomorrow I have my appt with the doctor to go over the results. I recheduled it from Friday to Monday so that I could have my brother with me. He flew in from San Diego this weekend. Its so good to have him here. He will have to leave on Friday and my sister will come on late Sat or Sunday. I spoke with the nurse coordinator on Friday, as she has already seen the results, she did tell me they still plan on admitting me on Tuesday. After hearing this, I cannot remember a time in my life where I have ever been this scared and alone. Even though I have my friends and family, there still is this feeling of being alone and scared. I guess to try and keep my mind off of everthing I over did myself this weekend! Trimmed tree branches and now can hardly walk as my side hurts so bad, probably pulled a muscle. In addition, I have 2 nice burns from my Harley after accidently leaning against the muffler while getting gas. Doctoring that up tonight so it does not get infected. I am sure the doctor tomorrow will really wonder about me now. My brother and I spent the day with my father today and had dinner in Mazeppa at a place called Grandpa Ed's. Good food and a nice ride! God Bless everyone and especially those I know that have Leukemia and MDS. Please remember to consider being a bone marrow donor! Love to all- Doreen
Wednesday, August 3, 2005 11:02 PM CDT It was a long day today, full of tests in Minneapolis. We left before 7:00 am and got home around 8:30 pm. I thought I was beat, went to bed and tried to read but was too tired, turned off the light and then could not sleep. The beating of my heart was so loud and strong. Even the crickets outside were too loud and were off key. So here I am updating this. I am beginning to feel like this is more like therapy for me.
Tuesday, August 2, 2005 10:50 PM CDT I have had so many ups and downs this past week that I thought it best that I update this when I was somewhat emotionally 'normal'. So far the week of tests at the univerisity of mn have been going well. Tomorrow will be a long day as I have to get transfusions up there followed by a muga scan. This is where they inject dye into you and then put you through an xray machine to see if they see anything unusual. I have been through this before, the only uncomfortable part is having the iv done for the dye to be injected. After that I will be able to go home, should be about 5 or 6 pm. Nothing on Thursday so I can stay home and mow or do anything i feel like it! Friday, I have an appt with the Dr. up there to go over my results and the word is that they will probably look at admitting me on the following Tuesday, August 5. Am I ready? As ready as I will ever be. I am so tired of being worried and so tired of not being myself, not being able to do the things I can and want to do. My son has been the best this week, taking me to my appts, driving me to mpls and really keeping my mind off of all this. He makes me laugh and makes me so thankful I have him in my life. There are so many others that I love and have helped through some of these bad times for me. I never realized how special 'friends' and family are. Whew! Well off to bed to read awhile. By the way, lately I have a hard time getting to sleep before midnight! I think I am afraid of wasting any time that I can be awake to enjoy life. Thank you everyone for praying for me. I never understood how much and how important prayer is until now. Until later.... much love to everyone. Friday, July 29, 2005 6:07 PM CDT After months of looking at empty, dirty bird feeders, I finally, took them down today, bought new ones and filled them today! It is wonderful to sit and listen to all of the birds that discovered they are now filled! I know it will also attract the 2 new fawns that have been visiting my flowers so often lately. For them, I bought some film so I can hopefully capture them on film. They are so cute even though they love my flowers! Well, we are staying overnight in Minneapolis Sunday night as my appt is at 9:00 and there is no way I will get my son up and driving at 7:00 am. Besides, it will be fun to stay up there and walk around the campus as the hotel is right on the U of MN campus. Lots of cute little restaurants and stores to see. Hope to be home fairly early on Monday Afternoon. Tuesday is a short day, Wednesday will be long, Thursday is open at this time and Friday is my consultation with the doctor with all the results. She then should be able do tell my my true admission date. Love to all, thanks for your prayers, I need them more than ever! Doreen Monday, July 25, 2005 10:31 PM CDT This weekend my body ached all over. I had pity parties and decided to not send out invitations. Everyone has their own problems.. Anyway, I decided that with my appts in the cities moved up a few weeks, now August 1 for work ups I had better get my blood checked again. Wow, what a shock to see my hemoglobin dropped to 7.2.. normal is 12 - 14. I am usually in the 10 range. Platelets also dropped to 11,000, again, normal is 140,000. I usually am in the 20,000 to 25,000. It made sense why I was feeling so terrible. They gave me one bad of red cells which takes a obout 3 hours and I will get another tomorrow along with a bag of platelets which take about 1 hour. While I was getting transfused we had a tornado warning. It was humorous because they give you an option to stay in your bed or move into the corridor. If you stay in your bed they make sure your curtains are shut and gave me an extra pillow, I guess for protection?!. I used to get so wound up when we would have a severe storm warning, today it was just another day. Funny, how a serious illness changes your outlook on what makes you scared. It was one of those days today... please remember to never take life for granted and to give Give Blood. Thursday, July 21, 2005 1:28 PM CDT Well.. good news everyone.. my bone marrow biopsy came back as normal! The mayo clinic will fax this up to the university of mn. The u of mn now would like to start the work ups on August 1, no more biopsies as this one will be sufficient. They expect a date of Aug 8 or 9 to be admitted. I put my name on the waiting list for an apt as I will need to stay around there for a while after my approx 3 weeks in the hospital for a transplant. I know it seems like this is dragging on and on but I feel like I am getting stronger and getting better prepared for this. So there must be a reason for all this madness! In the meantime, I am still enjoying life, my house, my son, friends, pets, etc etc.... and all the wonderful notes I get on my caring page from friends and loved ones I have not heard from for years and years. What a great experience this has all been. All my love, Doreen
Monday, July 18, 2005 4:52 PM CDT Through all of this, life has taught be to be flexible. I have been on the phone with the Mayo Clinic and University of MN today. We both agreed it was in everyones best interest to have the bone marrow biopsy here and make sure the results are clean before spending hours on tests, xrays, ct scans, etc. So my wonderful doctor here has scheduled that for tomorrow Tuesday. The results should be back on Wed or Thursday. I will say a little prayer that it is clean and I can feel good about going through with this. Tomorrow should be a great day! Friday, July 8, 2005 6:32 PM CDT Where does the time go? One more week and then I start my workup tests for the transplant at the university of minnesota. It seems like a year ago that I started all of this, went on a leave from my job to start treatments here in Rochester, gave up one of my dogs to a dear friend until this passes (I still manage a tear when I think of her). But I surpassed the chemo, my counts have come up, I can change my own dressing for the hickman I have installed, I think I have changed, not sure for all the better, a little more serious than I want to be but that too will pass when this is all over. I will continue to write in this as the weeks and months pass to keep everyone informed. Thank you for your prayers, good thoughts! I will get through this!!
Sunday, July 3, 2005 10:08 PM CDT It's Sunday night. I overdid myself yesterday and paid the price for it today. Slept most of the day today and went to bed at 7:00 this evening. I think my body was begging me. The phone just rang, its 10:00, it was Mark calling from the black hills. I cannot decribe the sounds in the background. They were having so much fun. After the call, I put the phone down and laughed and cried about how life is suppose to be. Its times like this that you do know what it is all about. Happy 4th of July everyone. Thursday, June 30, 2005 7:31 PM CDT My laptop had to be reloaded so I was without a computer for a couple of days...What would I do without one? I had my counts taken today.. All looks good, will plan on coming back on Saturday, early, so If I need to be tanked up, I can still do so and enjoy the long weekend! I am feeling pretty good but it seems like every other day, I cannot keep food down. Just when I put on a pound, I lose it! Just a hard way to lose it, I guess. I will never complain about my weight again. Its chilly tonight, almost cold enough to start the fireplace but since its 8:00 and already past my bedtime, its too late. I have been doing alot of reading and finally at a point where I can relax and enjoy it. Off to bed! Happy 4th of July weekend to everyone! As always, thanks for keeping in touch with me and reading my journal! Monday, June 27, 2005 2:22 PM CDT Just when you think things are going better. Apparently, I spent all day on Friday getting Red cells and for some odd reason they did nothing for me. So I am back in tomorrow at 9:30 am for at least another 6 hours of getting more blood. The good news is this: I am alive. My platelets which were always giving me problems did drop! and I am to report to the u of mn on july 18 at 10:00 to start my tests. So today I am a bit tired, low blood so I will spend another day just laying around and reading. Thank you for thinking of me! Friday, June 24, 2005 6:45 PM CDT another weekend and another weekend home!... I did have to spend the day at the hospital getting red cells to get me through the weekend... I will be ready to go with all this energy. My wonderful neice, Jennifer, is here with me, playing cheauffeur and just being here with me is fantastic. Mark is also home from college. I love having them in the house. There is something about the noice of family in the house that is soothing. No schedule yet for a set date for the transplant. I hope to get the schedule next week. In the meantime... my wbc is now 1.3 and i am now no longer neutrophic, which means I do not have to wear my mask in public but I probably will because of the added protection. In the meantime, peace and health and love to everyone who has supported me. Thursday, June 23, 2005 8:32 AM CDT i needed platelets on wednesday... getting to be a routine thing until probably i can get this transplant going so my body has some fresh cells in there that knows what to do!. my wbc is now at 1.2.. creeps up each more each day. i still have be careful however.. have not been on my harley i tell myself to work harder to get it up to the point where i can get out there without a mask so i can ride it one more time before the transplant! we are still looking into the week of july 11, more firmative dates later. Monday, June 20, 2005 1:08 PM CDT my counts are still on the rise and i am still feeling more and more like myself! i now have the challenging job of scheduling this transplant and getting this ALL behind me. I appreciate all your thoughts and prayers. Saturday, June 18, 2005 2:22 PM CDT Today is the FIRST day in a month that I have felt like Doreen Ward. Yes, I would but my better judgment( i have a better judgment?) told me not to take my HARLEY out even in the cul de sac!!! Yesterday, they pumped me full of new red blood, i had been so tired! and all new platelets and my body is now making white blood cells, slowly but its working! They want me to schedule the tranplant soon also. i will write more about that next week when i talk to the u of mn. But everyone, today is a great day to be alive especially after several that i wondered why i was. please please enjoy your families, your friends, your dogs, cats, the lawns, your house, life as it is so damn precious. Please also consider donating your blood and or platelets as everyday I see so many people that need platelets to live. Please consider it. Thursday, June 16, 2005 9:18 AM CDT Well, this morning, my sister, my angel, my caregiver left!. I got up this morning and the house is so quiet, I want to cry but I know I can take care of my self for a while and she does have a family out in Californi! It is a beautiful day here in Minnesota. Here is my update and there is not too much to say, which may be good. I have been holding my own. Still taking some oral antibiotics to fight off any infections that may want to visit me while my immune system is down. Yes, it is still taking its sweet time. Apparently this can be normal with the MDS disease. Today i go for a blood count at 1:30. I know that I will platelets, and red blood and hope they can schedule it for Friday morning as it will be an all day event! Thank you your support, prayers and thoughts as always! Monday, June 13, 2005 3:22 PM CDT The days seem to go by so slow but i still remain at home with no fevers and left with the doctors just waiting to do about my counts not coming up. My energy level has been slow to kick in also but i think it will just take some time. Went for bloodwork today, still no change other than i will probably need some more red tomorrow. So the good news is, i am maintaining my own and i am home!!!! one day, i will be writing to say my counts are going up !!! soon i hope. Thanks for all your prayers and thoughts! Thursday, June 9, 2005 8:38 PM CDT its thursday evening and i am still at home. i even forced myself into 2 walks today!. my bone biopsy results came back with no signs of mds but my counts still slow to climb. i think my doctor think that i should go ahead and do the tranplant now, as he is going to discuss with the u of mn doctor. physically and mentally, i just know know if i can handle more chemo. that took so much out of me, i never thought in a million years it would hit me so hard. i know each day i will get stronger and i need to keep myself up so i dont get depressed which is so each to do each day. i thank all of my friends for all your prayers, i would not be where i am right now if it were not for you. thank you for keeping in touch... love, doreen Wednesday, June 8, 2005 3:27 PM CDT its with a positive note this time that i can write something good. they dismissed me out of that nasty place yesterday and i am at home again. i slept about 10 hours last night in my own bed. its an adjustment and a good one! they will continue to monitor me and hopefully these counts will go up to get me stronger and stronger each day! today i feel thankful that i am home and now maybe can get on my road to recovery. keep smiling! Monday, June 6, 2005 10:00 PM CDT Well i wish i had some good news. not my time for that right now i guess. my counts do not want to budge even with some shots to help stimulate them. without my counts being up, i cannot battle these mouth sores. the weight loss has been almost 20 lbs. its a good think i went into this heavy and enjoyed those steaks and burgers when i could!! they gave me a 3 hour pass yesterday so i went home and just watched my neice, sister and son, work in the work mowing and planting flowers. i even found time to take a bath in my own tub. i am anxious to go home but nervous to keep picking up more infections.we will just have to wait day by day to see what happens here. its a long long road, whew. there are times i just dont feel like company as i am tired in week but i hope you are all thinking of me and i love to read emails and cards. Take care and i know this cannot go anywhere but up. peace and help to all of you and our family- doreen Monday, June 6, 2005 10:00 PM CDT Well i wish i had some good news. not my time for that right now i guess. my counts do not want to budge even with some shots to help stimulate them. without my counts being up, i cannot battle these mouth sores. the weight loss has been almost 20 lbs. its a good think i went into this heavy and enjoyed those steaks and burgers when i could!! they gave me a 3 hour pass yesterday so i went home and just watched my neice, sister and son, work in the work mowing and planting flowers. i even found time to take a bath in my own tub. i am anxious to go home but nervous to keep picking up more infections.we will just have to wait day by day to see what happens here. its a long long road, whew. there are times i just dont feel like company as i am tired in week but i hope you are all thinking of me and i love to read emails and cards. Take care and i know this cannot go anywhere but up. peace and help to all of you and our family- doreen Sunday, June 5, 2005 10:29 AM CDT Good morning. It appears that they are still trying to fight a fungal infection that I somehow picked up. They are giving me daily shots to try and get my wdb count up as my own body can help better than all these antibiotics they are giving me. Its been a very tough week, I cannot even in words, explain how tough it has been for me. Once depression sets in, its hard to try to see that this is only temporary. I want to cry and get it all of my system but I cannot even do that. There have been so many special people that have been getting me through this. I wonder what I would do without them. Hopefully each day will keep getting a little better each day so I can finally be able to go home and get my strength up. Friday, June 3, 2005 12:56 AM CDT Friday and still no change in my blood counts. They may have to biopsy the spots on my lungs to find out what is going on with them since my fevers are still getting spikes. Today I am getting platlets and since there is a shortage today, I will not be getting a full dose. If there is anything any of you want to do for me or for anyone, please consider donating platlets. I know from experience up here that so many people are always needing platlets. Let hope tomorrow will be a better day! Wednesday, June 1, 2005 7:16 PM CDT Hello everyone. I had very good news this morning in that 0.6. It was a high spot for me. I also wnt through the day without any pain medication! 2 doctors from the infectious disease department came in tonight. They are concerned but not overly concerned about 2 very very small spots that were detected on a ct ccan Not sure what that will do for my time frame for this moving on here.One day at a time.. Tomorrow will be a Wonderful DAY! Thank you all for hanging in with me. Tuesday, May 31, 2005 4:56 PM CDT The days have been dragging by, still no ups in my blood counts, however this morning, I woke up and just felt better somehow. Maybe these antibiotics are working!! I get very tired by the end of the day but was glad to be feeling less pain this morning. One of the nurses looked at the hair on my pillow this morning and said that they can shave my head so I said okay. I felt like I was going into boot camp. I will have to get used to it and be okay with it for now. Just a short update. Thank you for all your prayers. Doreen Sunday, May 29, 2005 6:21 PM CDT First of all, it is not good news when I do not write a few days. I am back in the hospital. With running a fever Friday nite into Saturday morning, and my throat so sore, I was dehydrated, on my last leg. They immediately started me up on anti-viral and fungus IV antibiotics before it spreads throughout. I was told this is now my immune system. This with oxy every 4 hours for pain is how my days have been going. This is starting to get crazy and scary for me. I cannot explain to you in words how I feel. Temps are still up and down, wbc low and cannot swallow. I just know it has got to get better and I wish I could see over the top of this hill. Thank you all for your prayers. Thursday, May 26, 2005 7:15 PM CDT Is it true that there is a light at the end of the tunnel? If so, I hope I start to see it soon. One of the common problems with my low white count is infections. After 2 different antibiotics, my throat was not getting better, so they sent me to an ENT specialist. Not to get too graphic, but using a small long black instrument, they went down my nose to look at the bottom of my throat. That is where they found cold sores or some sort of viral sores. Unfortunately there is nothing they can do but eleviate the pain until they can get better and my immune system can clear them up. Yes, I am miserable as I can barely even swallow water. On that note, I am tired so I will end here but wanted to give everyone an update. Tuesday, May 24, 2005 8:00 PM CDT Today was not a good day. I woke up with a terrible sore throat a low grade fever. After my 10:00 dr. appt, they decided to try me on some oral antibiotics. My counts dropped even lower and I continue to feel terrible all day long. I think I will go to bed early tonight and hope that tomorrow is a better day. Monday, May 23, 2005 8:30 AM CDT As I get ready for my appt today to get those counts checked, I sat and thought about all the positive things that I have received out of this. I wanted to write them down so that I could look back and never forget them! Sunday, May 22, 2005 6:45 AM CDT It Sunday already and I have been home for a few days. My sister left to spend a week or so at home, so here I am. I have to say that I am doing pretty well. I cannot sleep well and then I am always tired. I get down sometimes because I know once I start feeling better again, I will need to go through this again. But I guess that is trivial stuff. I dont even think I look like myself anymore. After losing about 10 lbs, my hair is now dark and very very short, I think its a funny life sometimes what we all have to go through and really hope there is a reason for it all at the end. My blood test results remain the same. I still have to go in everyday. Even this morning, Sunday! But today the sun is shining and its going to be a great day! Thursday, May 19, 2005 10:56 PM CDT I had my blood test this morning at 8:00 a.m., again tomorrow at 8:00. WBC was at .04, dropped a bit. I am starting to get discouraged and wondering if it will ever go up. I get so nervous about being around anything or anyone right now. More hair falling out today. Tomorrow I am going to go in and get it all clipped off. There comes a time when you decide that it does not matter. That time has come. That chemo stuff really does a number on you! So nothing bad, however the goodness is that I am still enjoying my time in my own house. The funny of the day: I always get alot of junk email like everyone does. Today in my inbox was this: Balding? Grow hair quickly! What timing was that?!!! Wednesday, May 18, 2005 6:46 PM CDT I am so happy tonight that I do not know whether to laugh or cry so I will do both! They sent me home this afternoon. My stomach is feeling much better and I am on oral antibiotics now and for 1,000 a night, I need to be at home!! So here I am, listening to some of my favorite music, looking out my window at the rain and the great trees and grass. It is so beautiful!!!! WBC - still at .05, back in tomorrow morning at 8:00 am for another test and this time I plan on coming home. Tuesday, May 17, 2005 9:46 PM CDT Well I made it through another day! I had my bone marrow biopsy done this morning. It went well and tomorrow I have the results back. What ever they are I will make the right decision as to what are my next options. It will be a long road for me but I will tackle it. For now, I have to consider this my job. Feeling much better today also. White blood count (WBC) .05 - I am told it can go up and down for a bit so I should not get too excited because it jumped .01! Tuesday, May 17, 2005 9:46 PM CDT Well I made it through another day! I had my bone marrow biopsy done this morning. It went well and tomorrow I have the results back. What ever they are I will make the right decision as to what are my next options. It will be a long road for me but I will tackle it. For now, I have to consider this my job. Feeling much better today also. White blood count (WBC) .05 - I am told it can go up and down for a bit so I should not get too excited because it jumped .01! Monday, May 16, 2005 3:05 PM CDT This morning, the doctors indicated they know what the infection is and the antibiotics they have been treating me with are the right ones. That is good news! The infection is called C-diff and the doctor said it is one of the more easily treated infections. It is an intestinal infection caused by the low white count that is caused by the chemo. I am starting to feel much better as they continue to treat it. In fact today, My sister and I took a walk outside for about 30 minutes. It was so good to get outside again. I have to wear my mask when out but no other restrictions. Its amazing how the simple things in life make one so happy! Tomorrow morning is my bone marrow biopsy. On Wednesday I should know the results. I am praying hard that the chemo did what they want!. Have a great day and evening everyone! Smiling today! Monday, May 16, 2005 6:37 AM CDT Hello. Well I am still having these dang stomach problems although they have got better since they admitted me on Friday. They still have me on IV antibiotics, one doctor told me until my white counts go up. This can take a couple of weeks, its all up to the individual. So I am not going to plan on going anywhere soon. My white counts are: (as I am going to keep track now) Saturday, May 14, 2005 8:05 PM CDT Well, the last 2 days were unexpected for me. Was fine when I got home and then I was sick all night. since I had my dr. appt for my blood test in the morning, I waited for that. Thats when the nauseau, stomach cramps and high temps started. By the end of the day, they admitted me. But by that time, I was feel so sick, I just wanted to stay in the hospital. They have run all sort of test, chest xrays, abdomin xrays, some have bome back negegative but we are still waiting for others. I guess me here on the weekend does not help. So, here i am, nice big room this time. I have been getting IV's with different antibiotics. Not sure now when I will get out. Frustating but I dont want to be home feeling like this. Hopfully they will track this down so they can kill it. Update you soon.. Good night all.... Doreen Thursday, May 12, 2005 8:25 PM CDT Yay! I got to go home today. Have to report back in at 9:00 a.m. tomorrow morning for all my vital signs, blood test etc. I am beat though. Got home at 3:00 after a busy morning at the hospital and then came home and over did it. I was soo glad to be home. Guess, I will suffer for it now. I have to watch my temp and if it gets to 101 or above, back I go. I should go to bed but I cannot pass up the final episode of yes, you guessed it.. ER. Wednesday, May 11, 2005 3:05 PM CDT Today is much better. I knew it would be. I have had a little allergic reaction to the Red blood but they will be giving me some benedryl for that. In addition, we had a long talk with the nurse today. I am very prone to infections, in fact they expect them in the next couple of week until my counts come up. At least they are expected, I just have to be aware of them and notify when I have temperature. Yes and I did learn that any day now my hair fell out. Not a big loss, I had it cut short but just the thought of it scares me. Tuesday, May 10, 2005 8:27 PM CDT Long hard day today. Received 2 packets of Red blood cells and one packet of Platelets to get my counts back up there. I am so &&&&***!!mad at cancer and what it does to people and their loved ones I could scream but instead I will just cry and have a pity night. A 26 year old young pretty girl was admitted in the room next to me with Leukemia. Her parents were kind enough to stop on their way out to say hello and to let me know they would think about me and wish me well. A 65 year old man in my corridor was diagnosed with Lyphoma and was just told there is nothing else they can do for him. It hurts to see him lie there while his family crys and looks on. Still, I can feel fortunate to be able to understand how valuable and precious our lives are, mine included. My sister comes every day and sits with me. How can I put into words how important a sister is at this time. I can't but I think she knows. Monday, May 9, 2005 9:34 PM CDT Hello. 2 more nights and days of the Chemo. I think it is starting to wear me down a bit. Could be the small room and being a bit frustrated with all of this. I pray that the chemo that they have given me will bring down my blasts so that a transplant can be done. Other than that, even with my 'chemo brain', I won in scrabble tonight! Sorry guys... Sunday, May 8, 2005 3:38 PM CDT Its Mothers Day and happy mothers day to all Mothers out there! 3 more nights of the chemo. It seems like such a milestone for me. Today they informed me that my Neutrophil count is at 0 and has been for 2 days - that is the part of the white blood cell that fights infection. This means anytime I leave my room, I have to have a mask. As long as visitors do not have colds, I can still have visitors. That count will not go up until after the chemo and sometimes takes a long time even after that. After seeing some of the other patients here, I do consider myself fortunate. Its very sad. I will always live each day as it is very important and consider each day as a gift from God being here. I hope you are all well, smile and enjoy your families today and everyday! Saturday, May 7, 2005 10:43 AM CDT Day 4 of the chemo. Still feeling pretty good all things considering. I am going a little stir crazy. My temp has been good and my blood pressure very good also. My appetite is starting to come back a bit. I am thankful how I have been so far. As I look out my window and see the rain I have such an urge to be outside and just stand in the rain. Its so amazing how much you miss when you cannot have it. The little things are so so important. I'll keep everyone posted on my progress. They are still saying 28 days in this place but I am putting bets on probation early? Any bets ? Friday, May 6, 2005 9:23 AM CDT I survived another night here. Actually, I slept really good and did not want to get up this morning, but the nurses and doctors keep coming in and encouraging me to get something to eat, shower, etc.. I can't even begin to explain what a life altering event this is. I am enjoying the lessons and really- they are ALL lessons, the bad, the good, the sad, the unfair, the anger, the gratitude, the change, the stress, the laughter, the tears, and oh the luck of it all. Thursday, May 5, 2005 2:05 PM CDT The day has really dragged by slow. I swear I will not turn on the TV again when I get home. I did go out on the patio down a couple of floors for about 5 minutes today and got some fresh air. That was nice.. I was hoping it would tire me out a bit. Since I have to pull this IV cart complete with all the chemo and antibiotics around, its quiet a chore. Taking a shower this morning was even more of a chore. You lose your modesty very quickly. Wednesday, May 4, 2005 8:58 PM CDT What a day! It started off by oversleeping! We were suppose to be at the hospital at 5:45 for surgery for the hickman to get placed . (Yes, I am a wimp and opted to put under) but I woke up at 5:15, threw on sweats and went to the hospital. By 10:00 I was in my room with the hickman placed. Because my platelets were still low, they opted to put the main line in through a neck vein instead of the chest in case I started bleeding. Its now 9:00 and they will start my first chemo at 10:00 which will be dripping straight for 7 days! Yes, I did alot of crying and panicking, begged to have a couple of vistors take me home however I am still here. My niece Jennifer has been with me all day, I finally had to send her home. God bless her and I am so thankful she is here with me. Darwin, thank you for coming to visit tonight, you always put a light in my life. I love you. As the chemo comes tonight, I will start out first with an Ambien so I will sleep all night! I am beat!. Thank you all for your prayers, I just know that they are helping. Mark... I love you honey and will see you very soon. Congrats on the great test grade! Good night for tonight.. hugs and kisses.. Monday, May 2, 2005 5:29 PM CDT Finally, they have me set to be admitted to Methodist early on Wed morning. The surgery to put the hickman in will be around 6:30 a.m. If all goes well, it takes about 30 minutes. Hopefully they will not have problems. But because my platelets are so low, I will need to go in tomorrow night and get a transfusion. They will not do the surgery for the hickman unless my count is at least 50,000. It was only 19,000 today. Then I am on my way up to the hemotology floor for the start of the week of chemo. Friday, April 29, 2005 1:05 PM CDT Well, not hearing from the Dr. did not mean everything went away! I got my appts in the mail today for Monday. Blood test at noon, followed by appt with the hemotologist and then followed by a consultation with the surgeon to put the hickman line in for the chemo. I am assuming it will be tuesday when they admit me. So, the sooner I get in the sooner I get if over with!
Tuesday, April 26, 2005 8:32 PM CDT I had my blood test this morning and an appt with the head of hemotology at the Mayo Clinic at 4:00. First of all my blood tests looked good. My WBC (white blood count) was 3.7, up from 3.1 last month, Hemoglobin was 11.8 upfrom 11.2 last month and my platlets were 27,000 up from 22,000 last month. This has been my downfall.. Normal platlets for a woman is 150,000 to
Saturday, April 23, 2005 1:06 PM CDT There has been a rather long waiting period for me the last week, giving me a chance to mentally get my mind strong again. If I could only learn to stay off of the internet and stop reading every tidbit of information on MDS and Leukemia, I think I would be better off!
Wednesday, April 20, 2005 10:04 AM CDT Waiting and wondering has been the hardest part of this whole thing. It seems like I am always expecting something else to go wrong with me! Then there are some days where I can be really up and some that I don't want to get out of bed. I have been in contact with so many people with different types of bone marrow cancers. The only cure for these are tranplants. Some are so young with families just starting out. Like me, they are unable to find suitable bone marrow donors. I encourage anyone that is healthy to consider being a donor. It is not painful and there are so many lives out there that can be saved. Yours may be the one that can save someones live and help them live many more years. PLEASE contact www.marrow.org for more information on this if you are interested. Tuesday, April 19, 2005 11:12 PM CDT Its 11:15 at night, and since I could not sleep I wanted to think about some of my favorite memories that I have had recently. I started looking through my cruise pictures and thought I would share some of them. Just looking through some of them made me smile and made me remember just how fortunate I am and how beautiful life really is!
Tuesday, April 19, 2005 11:38 AM CDT The good news is that I finally was able to meet up with my doctor here at the Clinic. He wants to meet with me on next Tuesday to go over the chemo plans, meet with a surgeon to arrange the time to get a hickman in. This will be used for the admission of the chemo and will be my long term friend for a while. While this is not moving as fast as I would like, I do understand that things take time and each day is a new day for me with new information to learn and another day to enjoy everything around me. My sister will be leaving today to get sometime back home in California. My niece, Jennifer, will be coming next week to be with me during the hickman and the chemo being administered. In the meantime, its a beautiful day to be alive. Saturday, April 16, 2005 8:47 PM CDT Its been a nice weekend with Mark home. I am assuming the hardest part of all this will start next week when I will get the game plan from my doctor here at the Mayo Clinic. I really wanted to just thank all of my friends, family, and others that I have not even met for their prayers, encouragement and most of all love. My sister, a true caregiver has been very patient with all my ups and downs. Darwin, you have been so wonderful, not sure what I could do with out you. You are the best. AND Mark.. what can I say about you.. A wonderful son, who makes me laugh and forget about my problems! I love you!. Everyone is so special. This is just a thank you that comes from the very bottom of my heart. As I keep telling myself... Live Strong. Friday, April 15, 2005 5:52 AM CDT I continue to wait for some word from my Doctor at the Mayo Clinic here on what needs to be done for me now. It was a huge disappointment for me running into this because I know now that my road to recovery is going to be much long and much tougher. I have been trying to digest all of this along with the fear of the unknown. I know now that all I can do is live one day at a time and enjoy each day as I have it. I continue to question why and may never understand that, perhaps someday down the road. The weather has been spectacular and I have been enjoying planting some flowers and getting the lawn ready for summer. Thank you for the prayers, they have given me some strength that I never had. This weekend Mark is coming home! What a bright light that is for me! Tuesday, April 12, 2005 4:21 PM CDT I learned from my doctor today that my blasts in my bone marrow were above the limit that they like when they do a cord blood transplant. If they are over 5 then the chances of a relapse are great. Since mine are 6.5, they are sending me back to the Mayo Clinic for 3 weeks of chemo therapy to try and get my disease into remission. If they can do that, then I will be back to the U of MN for the transplant. If they cannot (something I do not want to think about), then we will cross that bridge when we come to it. They are hold the cord bloods that they have for me... One if from Germany and the other Spain. I should have some very interesting blood when I get through all of this. The set back was discouraging but I need to keep positive as I will get through this. Thanks for all your comments. I love to read them. Love you all. Monday, April 11, 2005 5:41 PM CDT Today started out to be such a wonderful day, in fact the whole day went good at my appts. I was briefed on the radiation, etc.. All looked good, until I got home and got a call from the nurse practitioner. Apparently, my bone marrow biopsy showed that the mds progressed more than what they can handle for a cord blood transplant. With that news they want us to come up tomorrow for a conference with the doctor to see what they can do for me at this point. I am guessing and I am always trying to speculate that they will need to get me into some chemotherapy to get this in remission before they can do anything. It was hard to take this news as I was just getting rather used to the idea of getting this over with now. Keep your prayers coming, I need your help...I will try and keep smiling!
Sunday, April 10, 2005 11:51 AM CDT Its been a beautiful weekend. I can't help but notice how much around me I have missed over the years. Even looking at the trees just budding have never been so special to me. I know that soon I will be back home and with new appreciation of my health, my body and everything that is going on around me. Kind of a tough thing to go through to make you a better person, God must have some special plans for me! Back to the hospital tomorrow to learn how to sit still during my radiation therapy. That will be a challenge. A dear special friend sent me a video that I will try to attach under my photos. It is beautiful. I love all your letters.. Thank you over and over! Friday, April 8, 2005 8:50 PM CDT Day 3 of tests and its a very good thing its friday. It has been a tough week for me emotionally. I did learn today that they would admit me if after reviewing all my tests, on Thursday after my doctors appt on Wed. I was so disappointed as I wanted a few days at home with my house, dogs, etc before the big day. I guess that will not happen. Today after the MUG scan and the CT scan and can't remember what else I had, crying.. Just the emotional part of it has been hard. Thank God my sister is here. She is an angel for putting up with me! I learned today that Yes.. I will lose all my hair, I will be sick and I probably will have complications, which does not mean anything, it just means they will have to adjust medicines etc, as every transplant is different.
Thursday, April 7, 2005 5:53 PM CDT Day 2 of tests.. The dreaded test is over. The bmb (bone marrow biopsy). After giving me the morphine, I seemed to slip into another world. I think my sister and I kept everyone entertained during the procedure. Yes, it still does hurt. You can feel them tap on your bone on your hip and then go go in and take the marrow out of the bone with a long needle. Its takes about 30 minutes. I slept all the way home, it must have taken alot out of me. Glad to be home and now just relaxing. Tomorrow is a long day up there, thank goodness for the weekend. We met 2 nice couples in the waiting room, One was in for her 7 year check up. What a success story! The other gentlemen was in for a 6 month checkup. He looked great! Thanks to everyone for keeping me in your mind and all the great notes. It helps keep me going more than you can ever know. Wednesday, April 6, 2005 7:58 PM CDT I made it through one day of tests today. I think this is a reality check for me. After checking into the clinic, the small waiting room was filled with patients that have gone through transplants. They were there with wigs, scarves on their heads or nothing at all. I keep telling myself that they were alive and that is what is important. After taking about 5 vials of my blood (which I need badly right now), I was sent for a chest xray, ct scan and my day was ended by a 2 hour chat with my social worker, who by the way helped me put alot of my fears out on the table. Everyone was very nice, it was a different world and I still don't know how I am going to get through all this but as my sister keeps saying, Doreen.. one day at a time!, as I continually talk about this and that, how am I going to get by the radiation, being in the hospital for so long, etc. Thank God for family and friends. That is the only thing that is going to get me through this. Did you hear that Mark?? You are that important to me right now. Tomorrow is the big day. I have a bone marrow biopsy. Unlike Mayo, they do NOT put you under. OUCH! I understand they give you some good drugs however. Tuesday, April 5, 2005 10:10 AM CDT The cruise was wonderful and very therapeutic!!! Maybe that was all I needed after all! Now that I am back home, the appointments will begin. Wednesday, I go in for a blood test, ekg and then followed by an appointment with the Social Worker. I just got off the phone with her and received more information on what to expect. Thursday, I will be having a bmb (bone marrow biopsy), friday, monday, tuesday, other misc tests (I dont have the specifics on that yet). On Wednesday next week, will be my consultation with my Doctor that will be my primary doctor. Pending any problems, they will admit me on the 18th of April. The first week will be the week that they start chemo and radiation, followed by the transplant. They are saying about 3 weeks in the hospital and about 2 -3 months in Minneapolis, close to the hospital. I already told the Social Worker that I will be pushing hard to come home and get followup with the Mayo Clinic. Those of you that know me, know that I am stubborn and impatient. That may be a good quality during all this! In the meantime, I try to keep smiling and look forward to a life without MDS Friday, March 25, 2005 2:20 PM CST I had my blood test yesterday. White cells were 3.1, hemoglobin 11.8, platelets 22,000. Everything was down just a bit but nothing to get too excited about. Its okay for me to go someplace for a week and relax so that is what I will be doing next week. Thursday, March 24, 2005 5:49 AM CST It was very ironic that I found this poem in a book the other day. I want to share it and remember it.
Wednesday, March 23, 2005 6:29 AM CST Last night I woke up several times, alot of tossing and turning. Wondering if I am doing the right thing. Wondering if I can actually go through with this transplant. Wondering if I would still be able to live another good year or two without it and if that would be good enough for me? I guess I never realized how good my life really was. I don't think any of us do until we have to go through something like this. I am busy now getting homes for my dogs while I am gone. I will sure miss them. I also woke up early this morning thinking that I forgot about my mail while I will be out! Monday, March 21, 2005 2:49 PM CST It has been a day full of surprises for me already. The University of Minnesota called early this morning and want to do the Transplant as soon as possible. I told them that next week I was cruising the Caribbean so they would have to wait a week! Honestly, they were okay with that. They are scheduling me and admitting me to Fairview hospital on Monday, April 11. April 6, 7 8 , I will be up there as an outpatient going through several tests, including an ekg, bone marrow biopsy and several other tests to ensure my body is up to this procedure. I plan on keeping this journal updated as I go into the hospital as much as I can and am able to. They expect me to be spending 3 -4 weeks in the hospital. The first week I will be getting prepped for the transplant. Which means radiation and Chemo to get my immune system down to where the new blood cells will have a chance to take over and do their job. The next 3 weeks I will be monitored very closely for any side effects, etc. After they discharge me they do want me to stay close to the hospital for 100 days. That will be the crucial time in which they will know if this is working or not.
Monday, March 21, 2005 11:27 AM CST I learned that my platelets have dropped to 23,000. All the doctors that I have been working with feel it is time now to do the transplant. I have decided on a cord blood. I cannot tell if the bone marrow would be better than the cord blood or vice-versa. With all the research, there are pros and cons to both. I do know that without a perfect match, the road for me is going to be a bumpy one. Many many times, I ask myself if I can get through this or if God will help me get through this. I cannot find answers to that either. I do know that this is something only I can do and only I can be strong for. No one can do that for me. Its a pretty helpless feeling. Friday, March 11, 2005 8:14 PM CST Today I am so tired. I had a blood test this morning and worked a full day. Tomorrow is Saturday and with some extra sleep and some exercise, I hope I feel better. Monday will be a big day as my doctor will contact me about the results of my blood test. Because the platelet count is getting lower each month, its never easy to hear the results. This may be the time that I need to make my decision on when the BMT will be. I'll say a prayer that all is well and I will not need to rush into anything.
Thursday, March 10, 2005 8:04 PM CST I found the caringbridge through another website that I visit often. What a great idea to keep others nformed of what is going on me. To bring everyone up to date, I was diagnosed to MDS in April, 2004. After a routine blood test, I was sent to a hemotologist because of low platelets. Its been almost one year, my platelets continue to get lower and a bmt is one of the options I am considering. It has taken me a year to come to grips with knowing I have a terrible disease and thanks to all the people I have met online who have given me encouragment and hope, I can get up each day, sometimes even with a smile!
Click here to go back to the main page.
My first appointment was to check out my hickman line to ensure it was to their likings up there. The hickman line is what was put in when I started my chemo. If you do not already know, it is put in to an artery near the heart and used to draw blood, even to put blood and platlets back into you. Pretty cool but it also requires daily cleaning and more specific weekly cleaning.Mine was supposedly one of the best she has seen... 3 cheers for Mayo! and one for me for keeping good care of it. Next appt was not until 2:00! but was counting on getting a transfusion in between because I was in need of hemoglobin and platelets again. Some confusion, alot of confusion on their part, put me back after my afternoon appts for a transfusion. So after my muga scan, ct scan and pulmonary tests, ( I won't get into any of these are), around 4:30 I was back to get my blood. Since they wanted me out of there by 6:00, ended up being 6:15, they only gave me 1/2 the red blood I needed and gave me my platelets. So here I am, home. God Bless my son for being there with me and never ever complaining but only telling me to stick with it Mom, we are not going home until all your tests are done and you get your blood you need. Those of you that know me well, know I would skip out early and go home. By the way, today gave me an idea of all the transplants they do up there. So many children that looked under the age of 10. There was a young couple in their early 30's that asked me how I was (I think they saw the frustration and fear in my eyes). I said fine and they began to show me pictures of their one year old that they did not think they could have after the chemo he had for his transplant 2 years ago. I asked him why he had the transplant and it was because of Leukemia, however he said when he was 13 , he had Lymphoma, and later in his early 20's had heart problems, and is now back because they found some lumps in his neck that they are treating with chemo. I think I felt a bit stupid I was feeling bad for myself after listening to that. He smiled and said that he just refuses to give up. Okay, now maybe I am sleepy enough to try this bed time thing again! Good night all!
Love, Doreen
- Less hair, less maintenance!
- some weight loss. well needed!
- Distant friends have become closer friends, something that may have never happened.
- all the new people that I have met through all this is amazing. They are all strong people who have to go through the same struggle.
- Patience. Yes I have learned patience. Really I have. I feel like I am more tolerant of things that I never used to be. Maybe I dont have the energy? Whatever it is, it is necessary right now.
- Family.. How important they are. I will never in my life time forget that.
- Mother Nature. I always loved the outdoors but now, the trees, blue sky and sun are even more special.
- and last but not least, although I have not grown as close as I have liked, I have grown closer to my spiritual side.
Now I know it is going to be a GREAT day today! Look at the sun!
On another good note, my dr. called regarding the bone marrow test results. It looked good! 1 down! Now I wait for my counts to go back up to normal (possibly 2 weeks), get another bone marrow test to see if those darn cancer cells stay away. If so, I will continue my journey towards my cure.. the transplant. I miss everyone so much but I will come back and as a new woman soon. Good night and remember- Tomorrow is going to be a GREAT DAY!
I also went for a long walk outside by myself tonight and went and got some dinner and brought it back to my room. It was a bit funny because wearing my mask I sometimes will get a look. Tonight someone actually went out of his way to walk way around me as to not to get close. I think he was protecting himself when in fact, I was protecting myself from him! Made me laugh inside.
Good night everyone!
Tomorrow is going to be a GREAT day!!!
I also went for a long walk outside by myself tonight and went and got some dinner and brought it back to my room. It was a bit funny because wearing my mask I sometimes will get a look. Tonight someone actually went out of his way to walk way around me as to not to get close. I think he was protecting himself when in fact, I was protecting myself from him! Made me laugh inside.
Good night everyone!
Tomorrow is going to be a GREAT day!!!
WBT - .4 - Normal is anywhere from 3.1 and up.
Meanwhile, I continue to try and beat these feelings that the chemo did to my body last week and try to keep smiling.
Good night and God bless.
I will keep you all posted!
Tomorrow will be GREAT day!
Tomorrow will be a GREAT day!
Mark, if you read this before your tests... good luck. You will do great! I love you! Good night everyone. Sweet dreams!
Mark- Love you!
I wish you all a great weekend.
So far just tired and a wee bit sick to my stomach. The hickman is still very sore but I am thinking that will get better. Enjoy the nice weather! I am very jealous!
I would not have made it this far without all of your love and prayers and I mean that from the bottom of my heart. We will get this going and look back at this as a major accomplishment that we are went through.!
I love you Mark and will see you very soon! Keep at those finals!
Went in today and got my short haircut, one way to start getting used to no hair..I like the short hair, not sure how I will feel with no hair however!
Patti.. I am holding tight to the cross and will keep it by me all the time. Thank you. Its so special and came when I needed to hold it.
Thank you everyone for your love and prayers. Doreen
200,000. Lower platlets cause more bruising and bleeding than expected. (One has to be more careful, no rock climbing, riding harleys without helmets, etc. not me!!!) After a lengthy converstation with Dr. Litzow, I learned this, that probably my disease MDS will eventually turn into AML (a type of leukmia). Will it be one year, 2, 3 or more.. No one can predict that. My BMBs (bone marrow biopsies) showed 3 percent of cancer blasts in my cells last year when I was diagnosed. This past one showed 6 percent. 20 percent is considered AML. Probably alot more medical stuff you ever wanted to know, or what I have wanted to know for that matter but important stuff when you try and consider your options. The U of MN will only do my cord blood transplant (because of success rates) when my blast count is below 5 percent. So, in order to achieve this, Mayo will admit me to the hospital to start chemo to try and get that down where they can perform the transplant. It will be a week of straight chemo which will get my immune system down to 0... (by the way, I can have guests visit, just no plants, flowers, animals,), after a week of chemo, they will continue to monitor me, have another bmb, to see what my counts are, check that again in another week. Sounds like just alot of waiting and praying for the best. After that time, it will be playing it by ear for the transplant. I finally said go ahead and make arrangements for me to start this on Monday. That was a huge step for me! Thank you Darwin for being my crutch and for being here with me during this. You are the best!
Once I get in, I will give you my phone number, room number etc as I hope to keep in touch with everyone.. For now.. I have 5 days of heavenly bliss and I will enjoy it!!! Love you all.
I have been spending time reading, doing some yardwork, and yes, learning to medidate! I have one of those minds that never quit or stop to take a breather, medidation should help relax the soul.
Love spending with special people in my life right now. Its the best!- xxoo. Loved the trip to the river. Mark, welcome back to the US! Wish I were young and carefree again! I will see you very soon as school comes to an end. I miss you!
Jennifer! I love you. What a beautiful card and what a beautiful thing to say to me. There are so many wonderful people who have been praying for me and sending me cards. Kay... thank you for thinking of me. Melissa! You make me smile!
I am looking forward to getting rid of this disease and moving on! Lou... thank you continuing inspiring me to be strong.
I came home tonight, had a cocktail, nice dinner and finally was able to take a shower to remove the bandages from the biopsy. I feel much better now. Please keep your prayers and notes coming. I am thinking of you all also. Love your life and enjoy everyday while you have it.
I just went outside and put on the gutters, must be spring, and what did I see where some of my periennals coming up! What a wonderful surprise. If there is anything that would make me feel good right now, it was to see my flowers coming up. Those that know me, know I love my flower gardens! I cannot wait until I get well enough to tend to them! The next best thing will be to be able to sit on my harley and start it up!
One day you finally knew
what you had to do and began,
thought the voices around you
kept shouting
their bad advice
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried
But you didnt stop
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations
through their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice,
which you slowly
recognized as your own
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.
My son, Mark, has been home this week for spring break. Its comforting just having him here. I love him more than anything.
There is so much to get ready but yet I find my self still putting things off.
Am I scared? You bet.. I never thought my life would have a detour in it like this. It is going to be a very bumpy road but this is something that I need to do and get it behind me. I want to live many more years, there is way too much for me to give up right now. Thanks for all of your prayers and good wishes for me.. I'll keep you posted.
I will be going up to the U of Mn in a few weeks for tests and then for the scheduling. I have learned that they do have the 2 embilical cords ready for me that they have chosed. I decided to take a week next week and do something I have always wanted to do and that is go on a Caribbean cruise. I think it will leave me with some good memories that I can use when I am in the hospital.
----End of History----
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