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.
