News from Cindy

Saturday, August 06, 2005

Post Transplant Update

Here's an update from Margaret:

The last few days have not been her best. I went to visit Cindy on Sunday and now I have a better understanding of life as a Mayo patient. First – the house they are renting is great – very peaceful, plenty of room and most importantly away from the hospital. Cindy’s day starts with her morning appointment at the Mayo. In the morning they check all of her blood and platelet counts, she meets with a dietician, the doctors, nurses etc… Since she is now back on IV antibiotics she also gets her IV. If the doctors or dietician feel that she needs any extra fluids or potassium they may also give her that. She is usually home by 9:30 and if all goes well is finished with the Mayo until her evening antibiotic IV.

On the days I was there the nausea had really picked up and she was having a hard time eating anything – although one evening she was able to eat a small Hershey bar and a bag of peanut M&M’s – odd choice for our normally very healthy eater. Unfortunately I think the nausea has only gotten worse as the week as progressed.

Early in the week Cindy was having a fever everyday. On Monday it was high enough that she to go back to the Mayo and start the antibiotic. She is back on a 7 day antibiotic regime. She is still battling the fever – it has gone as high as 105. The worst part of her fever is the chills. At one point I was sitting outside with her – it was 90 degrees outside and she was wearing pants and shirt and a sweatshirt and she was still shivering. Her only relief is Tylenol which she says doesn’t work at all - I guess she won’t be a spokes person for Tylenol. She really would love to be able to take some Motrin.

Everything seems to happen at once – on top of the nausea and fever her hair is gone!!!! It started to fall out on Sunday and on Wednesday she had her hairdresser shave her head. Her Dad said she looks great!!! She did pick out some very stylish scarves, bandanas and hats to wear. As you can imagine they all look great on her. With such a beautiful face she doesn’t really need the hair.

The good news is – her blood counts are starting to come up and she should be feeling better in the next day or two. She is still hoping they will let her come home next weekend. We are looking forward to having her back to the hazy, hot, humid east coast. Cindy is absolutely amazing and is showing so much strength and courage as she fights this battle.

Thursday, July 28, 2005

Update from Margaret

Here's a progress report from Margaret --

Hi – the blog hasn’t been updated in awhile so I am going to try to update it for Cindy. Last week Cindy completed her Chemo as well as the stem cell transplant. After all the build up the procedure only took an hour!!!

The doctors are constantly monitoring Cindy and all of her various blood counts etc… Last week they detected an infection which sent her back to the Mayo Clinic for an IV antibiotic. She didn’t have to stay but was required to have the IV antibiotic twice a day for 7 days. She is finally finished with that.

Although it doesn’t appear as if she has felt the full effects of the chemo yet she is feeling pretty crappy. As she described yesterday she has the worst hangover in her life and it won’t go away!!!! Unfortunately it will probably get worse before it gets better.

Thanks to Dave and Lori’s DVD player and Susan’s Ipod earphones Cindy has already watched the 1st season of Arrested Development. She is currently watching The O.C. and is then planning to move onto Curb Your Enthusiasm. We hope that she will be able to come home before she has to move onto another series.

She really appreciates all the cards, magazines, phone messages etc… She would love to be able to return all the messages but right now she doesn’t have the energy. Thanks for all of your support. It really means a lot and is very much appreciated.

Love, Margaret

Friday, July 08, 2005

update: July 8

Here's the latest from Cindy:

I cannot believe I have been here for a week already. My mom and I are staying in a nice 3 bedroom townhouse only 5 min from Mayo. It is sooo quiet here and we have only had to turn on the air conditioning once. The radio stations all play 80s music which reminds me of central PA.

Rochester is a small town (90,000) with 75% of the people working @ the Mayo clinic. I think the others work @ either the SUPER Target or SUPER Walmart. Everyone here is genuinely friendly except for our neighbors who don't seem to like us. The 15 hr drive here wasn't too awful as we stopped in Pittsburgh one day to see Betsy for lunch and the next day in Chicago to see my sister.

The past week has been full of testing to get a baseline and also to make sure I am ready for the transplant. They took 14 viles of blood and did another bone marrow biopsy the first day. I've also had an echo cardiogram, lung and kidney tests as well as an EMG which is a more painful version of acupuncture where they stick needles in your muscles to check the nerves.

I met with the transplant team and my doctor yesterday. They are hopeful that I will be able to remain an outpatient if I don't develop a fever or get dehydrated. 70% of the patients are hospitalized but I am otherwise healthy so I should be able to remain @ home.

I start receiving growth factor shots today to draw the stem cells out of my bone marrow. This may cause some bone pain as the marrow expands. They are hoping that I will have enough to start harvesting the stem cells on July 11 (Mon). This will involve lying in a hospital bed for 5 hours for 3-5 days with IVs in both arms so I won't be able to move much. This is when the DVD player will be very much appreciated. They pull out blood from one arm and siphon it through a machine to get the stem cells and then give back some blood through the other arm.

After they finish this process I will find out when chemo starts. They will do high dose chemo for 2 days and then do the transplant the next day. They essentially give you back the stem cells after they poison you with the chemo. After this it is a waiting game to get all your blood counts back up. They say I will be @ my lowest point a week following chemo with my immune system @ zero. Then it will be a fight to regain my counts and strength. They say that it can take 1-2 years for the nerves to regenerate but everyone is different. Most days I am ready for this fight but sometimes I get sad wishing I was home playing with Adam or hanging out with all of you. I miss everyone, especially Adam, so much.

I have been swimming @ the local hotel pool and doing pilates too. I get really tired in the early evening so I try to go to bed early. The sun doesn't set until 10 pm so sometimes I am in bed before that. I am reading a lot and listening to music because summer TV sucks. My mom and I are getting along well. She just spent her first anniversary in 42 years away from my father. He's flying in on June 21.

P.S. The state bird is the mosquito

P.P.S. love and miss all of you!!!