Saturday Evening Post

“Executive Summary” on the Medical & General Well-Being Front

Carol’s been doing remarkably well – and all the doctors and nurses continue to be pleasantly surprised by her level of activity, alertness, and good humor (they are all interconnected, of course!). Her energy and attitude are infectious and she no doubt entertains the staff more than the average patient (the only “infection” allowed around here).

Since I arrived Friday morning, Carol’s white blood cell counts have gone down as expected, but her platelets and hemoglobin levels have remained fairly constant. After her last dose of methotrexate tomorrow, (a drug that’s sometimes used as chemotherapy agent but is being used as intentional immunosupression to allow for her new cells to take over), her counts may dip further causing her to be more tired and potentially could worsen the mouth sores (a typical side effect, which she’s experiencing to a lesser degree than most patients at this point in treatment). On the other hand, one of her doctors suggested that she’s doing so well, that she may actually be at a plateau point now and could be trending upwards in the next few days…we hope he’s right …shall see. Her doctors say it looks likely that mid-late next week Carol may be moving on to recovery at either the Hope Lodge or nearby apartments!

Long Weekend Activity Log & Visits

Carol & I have power-walked the halls a few times – have music (and each other) -- will travel. It’s a good thing there are different colored paths in the design of the floor so the nurses know which side to stay on to stay out of our way J. While we are limited by the geography of the Bone Marrow Transplant wing, Carol’s stamina has not so far been limited (today we walked for an hour straight at power-walk speed).

Yesterday we had a number of visits besides the doctors, nurses & techs – Bari the Yoga teacher (we both enjoyed yoga), the Massage Therapist (that was not a shared activity with me!) Physical therapist (didn’t really need her services with this much going on), and the discharge nurse…whew!

The discharge nurse’s visit (one of several that she’ll make to be sure each of her caregivers hear instructions first-hand) to discuss the next step once she leaves the BMT wing at Moffitt Cancer Center, boundaries and precautions (mostly risk of infection, falls), what symptoms to be concerned about & what to do about them. She’ll need to go to the clinic at Moffitt Cancer Center daily to have her vitals checked, blood drawn, and possible IV’s as needed. Once at this phase of the Journey, Carol will be able to take oral anti-rejection meds vs wearing the pump she has right now, and will be able to come and go, including limited outdoor walking (with a mask) as long as she doesn’t spend too much time in the heat or sun – a few tastes of freedom J

Yesterday & today we’ve been busy making beaded jewelry (Carol has WAY more patience for this than I do, and much better at engineering solutions with limited hardware!).

Tomorrow afternoon we’re very much looking forward to seeing our Dad & Joyce and then it’ll be time for “changing of the guards” from me back to Jaime (who hopefully has had some time to catch up over the past week between Sherry’s visit & mine, while thoughtfully ensuring there are some organic food choices in the fridge for us).

-Susan (sister)

P.S. You may have noticed the photo of Carol’s new room decoration – her personalized training gloves that I brought as a symbol of her strength, endurance & resilience. Who knows, maybe after all this she’ll take up kickboxing J

July 14, 2010 Girls on vacation

So it's my turn now!

I've been here since Monday afternoon.

Monday morning Carol got a red blood transfusion, but her white count was going down and her platelets were still low.
Tuesday morning she got a large bag of platelets and her third of what will be four doses of Methotrexate for immunosupression.During which time she sucked on her special melon ice made for her by Cathy.It did the trick but made Carol so cold that she needed an extra sweatshirt and a warmed blanket.A little while later we had lunch and the day got better from there.
Today Carol woke up with the worst headache immaginable, but after some pain medicine she felt better. Within an hour or so she was her self again.
After thinking it was going to be a horrible day it was so good to see that smiling face.
Her red blood count is at 10.9 which is still in range.Platelets are up to 67 from the lol be out of here west which was 11. Today Dr.Thomblin came in and told us that she thinks Carol may be out of here the later part of next week. She'll still have to stay in the area to be monitored for two months. We won't know where she will be staying until the time comes, but we'll keep you posted.

There are people who come in to teach yoga and do physical therapy.And Carol takes every advantage offered her to be active and positive.I thought I was coming here to cheer Carol up, but the energy and attitude she has is so uplifting I just don't want to leave.

We have laughed,played,talked,and walked
(amazingly fast,where does she get all that energy?)We have spent the past few days doing some art projects and making jewelry. We've also had time to catch up.I am grateful to have the opportunity to spend this time with Carol, and I intend to be back in a few weeks.

This may seem like a weird place to spend my vacation, but my roommate is the best and the sunsets are spectacular.

See you soon, Sherry

Arts n' Tracks

Hello all,

Daniel here, visiting for just a day right now. Hopefully longer next time.
Yesterday my mom started on a small dose of Methotrexate as an anti-rejection medication which can cause mouth sores and some other side effects. Half an hour before this began to 15 minutes after, she had to suck on ice (specially made by Cathy with cantaloupe and mint leaves) to help prevent the mouth sores and other maladies in the GI tract. Fortunately she did not notice any side effects so far apart from her interrupted sleep. Three more doses of the methotrexate will be administered within the next nine days. Meanwhile, her blood counts are expected to decline. So far, however, no transfusions have been needed. (Blood counts as of 5am this morning were White: 2.39, Hemoglobin 8.9, Platelets: 37)

The other anti-rejection medication that is being administered (tacrolimus, delivered by a personal pump that is attached 24/7 as long as my mom is staying at the hospital) causes magnesium levels in the body to be depleted. They are being replaced by IV 2 to 3 times a day, as needed.

Although chemotherapy should have wiped out my mom's counts, her donor's cells most likely brought some healthy blood which is keeping these counts higher.

After breakfast today, we started a game of Upwords. Part way through that, we were visited by the physical therapist (she comes for about an hour every day) so I had a break. Afterward, we were about to go for a walk around the wing when the Arts in Medicine artist-in-residence, also named Carol, stopped by to see if my mom wanted to do some artwork. We decided to let her teach us how to make Origami healing cranes. We made 2 pairs so we could each keep one with us :) They are supposed to produce relaxation and healing. We actually made one pair with Carol and then went for a half hour walk. We had lunch after that, then finished Upwords and then made the second pair of cranes on our own =] (well... we did have some instructions that Carol left for us). Next we finished our walk. We got back just in time for dinner.My dad should be back soon to stay until my aunt Sherry arrives on Monday the 12th, to visit for 4 days which I know will be a lot of fun for Sherry and my mom! =]

See you next time!
-Daniel

P.S. New toy for Mom! Thanks Dad!

July 7th. Transplant Done!!!!

It’s a new beginning. Today Carol received the much awaited Stem Cell Transplant.
Originally it was planned for yesterday, but the donor had to be harvested twice to get sufficient Stem Cells for the transplant.
The preparation started mid morning with the actual transplant starting at 12:35 PM.
A specialized nurse was in charge of the preparation and transplant and stayed in the room for the approximately 4.5 hours it took to be completed. The actual transplant took a little over two hours.
During the transplant they hooked Carol up to all kind of monitoring devices (heart, blood pressure, oxygen) to make sure no adverse reaction went undetected.
It’s too early to tell, but the nurse mentioned that in most of these transplants some patients experience some kind of adverse reaction immediately, which requires additional meds to be given.
Fortunately Carol did not have any immediate adverse reactions. She remained calm and alert all the time, and even had the lunch I prepared for her. Hopefully her new Stem Cells will feel right at home in Carol’s body.
All the monitoring equipment is still connected for an additional 4 hours and she is also hooked up via IV receiving only saline solution.
For the next 10 to 15 days she will be closely monitored and if needed, be given additional meds to prevent GVHD.
I will keep you posted.
Thank you.
Jaime

July 4th. Brief Update

Carol already received the 4 doses of the 2 chemotherapy drugs prescribed for this protocol. The 4 days went by without major side effects to speak of. Other non chemo drugs were added yesterday to help prepare her body to fight GVHD (Graft Versus Host Decease). One of these drugs is administered by a small portable pump that will have to be worn 24/7 for a period of time. Others are in the form of pills.
Doctors told us to expect some kind of a reaction to the chemo a few days into the treatment and they were right. Last night Carol started feeling the effects of the combination of the drugs. (Discomfort all around, lack of hunger, nausea +)
The next few days are going to be a bit difficult because the chemo is supposed to reduce her blood counts in preparation for and after the transplant, which is schedule for Tuesday July 6^th.
Today Carol asked to postpone a visit from her father and stepmother Joe and Joyce, for another time when she hopefully feels better.
The days feel much longer when she feels pretty tired and hopeless so we hope to get through this stage soon.
Thank you.
Jaime

July 1st. update

Sorry for just a brief update this time.
Carol started her chemotherapy treatment last night.
With the medications given prior to the chemo, her night was very uneventful.
She fell asleep so fast that her chemo was given while sleeping.
All through the night nurses came into the room every hour or two and checked her vitals or drew blood to monitor in case of a reaction. No reaction the first night.

Today she was visited by numerous doctors, physical therapist. pharmacist, etc.
As expected, after breakfast and with her sneakers on, she went for a 45 minute walk around the hallways of this floor, which is the only place she is allowed to go and she could have kept going but doctors wanted to see her.

Our son Daniel visited us today. Brought us some things we had forgotten to pack and some special frozen cantaloupe granita with mint that our friend Cathy sent to help Carol in the event of mouth sores.
While here Daniel also took a 15 minute walk with Carol. She needed to make up the time earlier interrupted.
We also celebrated Daniel's birthday early because we will not be with him this Sunday.
We told him to stay in Sarasota and have some fun with his friends.

In about one hour Carol will be infused with the second dose of chemo.
I hope it goes as smooth as last night.
I will keep you posted.
Thank you.
Jaime