I was in Brigham Women's Hospital from September 23rd to October 9th
to have an autologous stem cell transplant. It is called autologous because it
used my own stem cells. The purpose of the transplant was to try to kill all
remaining multiple myeloma cancer cells with high dose chemotherapy. Since the
chemo also kills non cancerous cells including bone marrow, stem cells were
collected from me before the chemo and were re-infused on September 26 to
rebuild those things. Daily updates below describe my recovery beginning with
the day after I received the infusion
In my previous
post I described daily activities preparing for the transplant up
until the day I received my stem cells.
I greatly appreciate the many well wishes and prayers on behalf of me and
my family.
-- Daily Updates -------------
Wednesday September 27:
Day +1. I finally got a good night's sleep last night in a hospital bed,
thanks to melatonin, earplugs and medicine to control hiccups caused by another
medicine.
I had an allergy challenge today. I was gradually given an antibiotic to
see if I am allergic to it as I was to a similar medicine 40 years ago. Almost
every patient gets some kind of infection and the more options for antibiotics,
the better. The challenge lasted about two and a half hours and I had no
reaction so this preferred medicine can be used for me.
Nothing was scheduled for the afternoon and I was able to nap some.
The post-transplant journey typically involves the continued effects of
the chemo driving down blood counts. That goes far enough to make infection
fighting by the immune system ineffective. Fevers, mouth sores, loss of
appetite, weight loss, diarrhea, fatigue are the norm. Numerous blood tests
twice a day and symptom monitoring are how the medical team recognizes what the
patient needs and treats them. Feeling worse comes before feeling better.
In about two weeks a patient and immune system may be recovered enough to
be discharged from the hospital.
Thursday September 28:
Day +2. I slept well and was awake earlier than recently. I waited for the
morning vitals check and requested a shower. Showering means the connections on
my chest for blood draw and medicine must be covered with a waterproof bandage.
I also need clean hospital clothes and towels.
Nausea was low this morning and I ordered food. Some food I would put in
the refrigerator for later.
Both sons came to visit. They brought things to make me more comfortable
while recovering. Ear plugs, ear buds, nighttime eye shield for sleeping,
lozenges for dry mouth, things to fight nausea, a “we love you” poster, a mini
speaker for in room music, strings of lights, a we love you poster. And my
first Lego set of my own.
While we visited, two ladies from PT came to talk about my request for an
exercise bike. The bike was delivered later and I was taught how to use it
safely, then I rode the bike while the PTs monitored my heart function. I
passed the test, so the bike can stay until I don't want it or can’t use it due
to low platelets.
As nice as it was to have my kids visit, it really made me tired. I laid down to
rest after the visit.
Nausea increased in the afternoon. I got medication to help and ordered a
meal from hospital food service.
Friday September 29:
Day +3. I slept well again but had 2 bouts of nausea during the night that
caused painful dry heaves. I had nothing scheduled for the day, so I just sat
around in the morning waiting for what the nurse would direct.
Some medicine helped with the nausea in part. I did eat some breakfast by
mid-morning.
My blood pressure was low while standing compared to lying down. This
meant no exercise bike for me, even though it was not on my wish list for the
day. I was feeling fatigued.
Eventually I opened up the Legos and passed a couple hours in enjoyable
and distracting activity.
The word from the medical staff is that side effects and risk of
infection will increase and make me more uncomfortable for at least a
week.
There were many encouraging messages through the day that lifted my spirits.
Nausea has been gone since early afternoon. I ate and drank more today.
Regular food has been some trouble lately but not this evening. I credit it to
God's hand on my day.
Saturday September 30:
Day +4. I have had the blahs today; it is the fourth day since receiving
my stem cells. My blood counts are lower and my energy is too. My most frequent
posture today has been lying down in bed or on the recliner. For an hour or
more I was covered up to keep warm.
I managed a shower, breakfast and some time on the exercise bike. I
passed time with sudoku, college football, and Christian radio. Due to lower
numbers, I received IV fluids for two hours in the late afternoon.
This will be an early-to-bed night.
Sunday October 1:
Day +5. More ups and downs with my symptoms, mainly fatigue and diarrhea.
Out of bed for the morning, back in bed for the afternoon. Feeling chilly and
developed a headache. Heated blankets feel really nice. I got medication for
the headache.
Keith visited for part of the afternoon. I stayed in bed but it was nice
talking with him. He took my laundry to wash it for me. Rose and I talked this
evening and it was the part of the day in which I was feeling my best.
Running friend Denise sent a long email with so many wonderful memories
that we have shared. She warmed my heart.
People really make the difference in our difficult times.
Monday October 2:
Day +6. Feeling up and down has become the norm for me. Today started in
the down pattern. Diarrhea was one part of that. General tiredness and absence
of an appetite was another.
Because of lower blood counts, and lower blood pressure, I was receiving
fluids before 8:00. So I rested in bed. Later in the morning more fluids were
given. Around noon I ordered some food and ate some chicken tenders. Some
snacks and drinks were set aside for later.
Noontime was when I first got medicine for my diarrhea. So far, that
symptom has responded well. I sat on the recliner after eating and then took a
low intensity 16 minute spin on the exercise bike.
Some family members expressed concern that I might be depressed. I asked
the nurse what she thought and later asked the doctor. I agreed to chat with a
social worker to be sure nothing gets buried or goes unaddressed. I definitely
am in uncomfortable and discouraging circumstances. But, I think I'm okay and
am simply waiting for things to feel like I'm recovering. That likely won't
come before the weekend.
Meanwhile I regularly hear from people who love me and who encourage me.
It's great to know that I am loved. No matter what I can or cannot do.
Tuesday October 3:
Day +7. I felt better today than on recent days. Maybe I am accepting the
new normal. The main thing to be dealt with was fatigue.
I start my days like I have for decades, with Scripture, devotional
readings and prayer. More than any other thing, I credit this with building my
faith in God's goodness and helping me to strive to faithfully live the
Christian life. My current devotional reading focuses on authors from the early
Church. I also use the Laudate app and a read through the Bible schedule.
I got out of bed earlier today because I wanted to finish a shower before
my company arrived. Both sons were to be here today. By the end of showering
and getting dressed, I was feeling tired. It amazes me how little energy and
stamina I have.
It was a really nice visit. I was in the recliner for the first couple of
hours. My electrolyte numbers were low, so I was given three different IV bags
over the next few hours. I was tired just sitting there and my son told me that
I looked tired. Near noontime I switched over to the bed and the
"boys" went out to get food. I soon fell asleep. I was partially
rested when they returned.
I'm in the bed now after dinner, and before 7:00. I might just stay until
morning. Except for bathroom visits of course. (He says with a smile)
Wednesday October 4:
Day +8. I started the day feeling okay but within a few hours things had
shifted to be my most unpleasant day of the process. Fatigue, some nausea, GI
tract rumblings sent me back to bed. They say it should improve in the next
couple of days when the stem cells start making new blood cells.
I did the least today of any day here. I resumed Lego building. A new bed
with an air mattress was delivered to relieve my back discomfort.
Thursday October 5:
Day +9. I was told that days 5 - 10 are often the most uncomfortable
ones. Yesterday fulfilled that prediction and today was almost its equal. The
same physical symptoms as yesterday showed up today. The new bed really helped
my back.
My hope for an early shower was derailed by an infusion of platelets. The
platelet count was in single digits.
Keith and Jillian came to visit me. When the doctor team came in on
rounds, we heard good news. My white blood cells and neutrophils have begun
increasing, if only minimally. This is the sign that engraftment is taking
place. My stem cells have found their place in the bone marrow and have begun
creating healthy blood cells. I can't express how much this pleases and
relieves me. The days of suffering with symptoms should begin to ease up.
I had a visit from a nutritionist in the afternoon. Eating enough has
been so difficult. Food will be ordered for me, to boost calories and protein
mostly through drinkable supplements.
Other than bathroom visits I have been resting. Maybe I will feel like
doing more tomorrow.
Friday October 6:
Day +10. Higher temperatures during nighttime vital checks would set the
pattern today. Extra lab work was ordered to check for infection. And an
antibiotic infusion was lined up for morning, noon and night. It seems that no
infection was found.
I took a shower and it helped me to feel better. Other than fatigue, I
didn't feel bad today.
I received some phone calls related to the details of going home. The
discharge date isn't set yet, but the plan is to send me home Tuesday October
10. That assumes that my blood counts are okay and that I'm not having other
troubles.
I have started watching the TV series The Chosen. I'm enjoying it even
though I'm watching it on a phone app.
Saturday October 7:
Day +11. This day has been low key and uneventful for me. My blood counts
improved nicely from yesterday. If there's a similar improvement tomorrow, a
discharge date could be set. It seems sure that it won't be before Tuesday
October 10.
I got an infusion of platelets this morning. And then antibiotics were
given three times through the day like yesterday.
This morning as I washed up, I noticed an odd amount of loose hair. My
hair is coming out, a typical side effect of the melphalan chemo.
|
|
|
My new look
|
I ate some eggs and toast for breakfast and turkey burger with whipped
potatoes for dinner - that is, in addition to the liquid supplements I have been
drinking. The food texture and chewing/swallowing were not
enjoyable.
Keith came to visit late in the morning and stayed a couple of hours. He
took some books with him to reduce what will need to go to the car when I am
discharged and to prepare for packing the car for the drive to take me home. I
watched a little football and spent time on the phone with Rose and our other
son. We discussed more of the details about preparations for my return home.
I think I'm getting a little better each day and am happy that my updates are not
full of difficulties. Tomorrow will be my third Sunday in the hospital and my
third without being able to be in church. It might be months before I can
attend again.
Sunday October 8:
Day +12. The doctor team delivered a nice surprise this morning. I can go
home tomorrow. They said my stem cells are over achieving, so blood counts are
looking good. No treatment is planned for today or tomorrow. If needed due to
travel or home needs, I could stay another day. But it was an easy decision, tomorrow it will be.
The exciting news about my discharge did not keep me from dealing with
fatigue. I spent a lot of the day on the bed. Keith came to visit and to
pack up as much as possible of the things in the room.
Tomorrow I will need to have the central line removed and to have
meetings to discuss nutrition, medicine and home care. Hopefully the trip home
can start by noon.
Monday October 9:
Day +13. It's discharge day and I was eager to start the 8 hour trip
home. Three things are to happen before I can leave. My central line is to be
removed, I need to talk with the nutrition person and my take home
prescriptions need to be filled and reviewed with me.
The line was removed without much trouble by 10:30. The nutritionist came
to talk about 11:00. The prescriptions were filled a little before 1:00. After
reviewing these with the nurse, it was time to go.
I was able to say goodbye to nurse Billie who helped me on the chemo and
stem cell days, plus on the days when I felt my worst. Her kind and steady care
helped me so much.
Keith and I got on the road a little before 2:00 and arrived home about
10:30.
Tuesday October 10:
I'm home. Recovery will take months. Updates to this post will be
limited.
Friday October 27:
Day +31. My pattern of small daily improvements has continued since coming home. I can eat more easily and it is more of my usual foods. But foods don't taste the same. Chocolate and coffee were favorites before, but not now. Nausea has mostly gone away. Fatigue is decreasing. But I have lost a lot in terms of energy and stamina. Activity for 20 or 30 minutes makes me tired. I have exercises to help my back work better and I have been taking walks outside.
I have seen my local oncologist and her assessment was that I'm doing great. Lab work shows most of my blood counts are within the normal range. I had a follow-up October 25th with my doctor at Dana-Farber in Boston. Her opinion was similar. "You look good. Keep doing what you're doing." We talked about what is ahead for me.
Regarding guidelines to protect me from infection risks: Take out food is now okay, really hot or really cold foods are safest. Meat should be cooked medium well at least. Still no bakery items unless "factory packed". Mask and gloves when out, mask through the flu season, avoid indoor crowds, go to public places during off hours to avoid busy times.
About how long do chemo effects last? i.e. GI issues, taste, fatigue, hair. Differences will start to become apparent around the end of month 2.
I asked when will testing for cancer cells be done? Around Day 90, about the same time as maintenance therapy starts. I had a good level of response from treatment before transplant. For maintenance therapy I will get treated with Revlimid and Daratumumab to help keep the myeloma from returning. There is no cure yet for myeloma and the particulars of my cancer mean I am at high risk of a quicker relapse.
All of my vaccinations/immunizations will need to be repeated since the chemo wiped out that protection along with my bone marrow and immune system. These will start around day 90 with flu and Covid shots. It will be about 2 years until my immunizations are caught up from childhood to this year. My protection from infections depends on the health and immunity of those who are around me.
I will have a followup at Dana-Farber again in December including testing to look for cancer cells.
