Stem Cell Transplant aka Bone Marrow Transplant

By the time transplant time hit, I was already feeling somewhat weak from the VDT PACE, ICU visit, and broken back.  They were able to give me kyphoplasty on 5 vertebrae at a time, but could do no more than 5 at one time.  I believe I had a total of 8 vertebrae that had fractured.  They injected cement into the vertebrae to repair the cracks.  This is why I still have chronic back problems today.  My mom and I were still staying in the hospital for the first transplant on October 26, 2020. I was happy to have my mom there with me!  For the transplant, they administer a high dose of melphalan, a very powerful chemical agent derived from mustard gas in World War 1.  The actual transplant is painless and uneventful.  It is the recovery process that is hard.  It can take up to a YEAR to feel fully recovered.  During the transplant, they had me chew on ice constantly before, during, and after the melphalan infusion to prevent mouth and tongue sores.  I remember there was an awful taste in my mouth while getting the infusion.  Afterward, the whole room as well as my body reeked of the smell of creamed corn, a well known weird side effect in the myeloma community!  The melphalan kills everything, healthy cells and cancerous cells, and destroys the bone marrow.  They then infuse your own healthy stem cells back into the body to help the bone marrow regenerate the healthy cells that have been destroyed.  The day of your transplant is called Day 0.  It is also called your “rebirthday” as your immune system is essentially erased and you begin to build a new one.  The day of transplant I felt ok.  The following days and weeks were extremely difficult.  I fought daily with a very long list of side effects.  I developed some mouth sores, extreme diarrhea, constant nausea, trembling, fevers, zero appetite, high heart rate upon standing to the point of fainting, and overwhelming fatigue.  I lost every hair on my entire body, including eyelashes, legs, eyebrows, etc.  Everything smelled awful to me and every scent was overwhelming.  My entire body felt bruised.  My skin hurt like someone had punched me all over.  I was sleeping like a newborn.  I would be watching TV and fall asleep for hours.  I was only awake for a short time each day. I was so weak and often had a fever that I needed assistance to do simple tasks like changing my clothes, doing my hair, etc  My mom came along as my caretaker and did an excellent job administering meds, making me eat, making me comfortable, and trying to keep my spirits up.  I can’t quite describe the lack of energy.  I was too exhausted to follow a TV show, talk on the phone, do a crossword, etc.  I had brought a lot of activities to do while bedridden but I was too exhausted to do any of them.  I made sure to call home every night to read to Charlotte but found even that simple task to be completely draining. I had once been in very good shape and athletic but found that I frequently needed a wheelchair just to make it to infusion each day.  If there was someone in line in front of me at infusion, I had to find a seat to wait because if I stood too long, I was in danger of passing out.  At night, I would sweat and soak through 5-6 pairs of clothes.  My mom would come in 5-6 times a night to lay down fresh beach towels and help me change.  She was washing all of my clothes and bedding daily in the hotel laundry room.  Each day, she would wake me up in the morning, force me to eat half a piece of toast and hope I could keep it down, and then drive me to the hospital.  Depending on how I felt and if I had a fever or not, I would either slowly walk to infusion or call for a wheelchair.  I would spend 5-6 hours in infusion each day for weeks.  I would get blood, platelets, potassium, fluids, and whatever else I needed. Then I would go back to the hotel.  I would sleep, try to walk a little if I could, force down an ensure, call the girls, and go to bed.  I did this for weeks.  The worst part by far was not being around my babies!  Being in such physical despair didn’t help.  When my counts recovered enough that they were sure I was out of the danger zone for infection, they allowed me to go back home.  Being home felt like I had won the lottery.  By the time I got home, I could walk a little more and had a bit more stamina but was still taking a ton of naps and was forcing myself to eat.  I was super thin and frail.  The constant fevers had subsided but I still had lots of trembling and stomach issues.  My body still ached and hurt all over.  I had about 3 weeks at home before I had to return to do another transplant!