Acute Myeloid Leukemia: 100 Days After Stem Cell Transplant

What is recovery from a stem cell transplant like?

Although I already shared about the first thirty days post stem cell transplant, I thought for this post I would attempt to cover the 100 post stem cell transplant days as those 100 days were among the most challenging I have endured.  After thirty days, I came home and had no energy. It reminded me of the exhaustion you experience when you first come home with a baby except that my entire body was weak, and I had to sleep 12 hours a day, and had to deal with some rather bad gastrointestinal distress and nausea. A few days after coming home, I had my 30 day post transplant biopsy, and results were quite good. Throughout all my resting, my buddy Cheddar was by my side.

When it came to appetite, I struggled greatly. My taste buds were ruined from the chemotherapy, and until they regenerated, everything tasted like I would think a pile of doggie doo-doo tastes like. This was not helpful at all because I had already lost about 20 pounds, and had no energy. I could not even tolerate drinking water. I normally despise soda, but it was all I could tolerate when trying to swallow pills.

Just before leaving the hospital, my husband and I had noticed that some of the skin on my face seemed darker. Within a few weeks after returning home, I started having patches of dark skin all over my body, which eventually started to peel. I could not keep my skin moisturized no matter what I did, and the doctor told me this was normal. My skin was also very sensitive to alcohol or any astringents, which were necessary for cleaning around my Hickmann line and dressing.

Over the next sixty days, many of the issues noted above slowly, ever so slowly improved. I began to take walks, which at first, I called ‘chair walks’ because I would have to sit every few feet, so my husband or children would carry and open a stadium chair upon request, let me rest, and we would resume the walk. I literally found walking up the slightly inclined driveway to be taxing, and would often nap right after these short walks. One day, I finally felt up for a short ride to the ocean. I needed to get out of the house, so my husband took me on a short ride and it was a good mental boost. The mental boost was needed because I was missing monumental events in my kids’ lives because I needed to stay rather isolated. Before I knew it, it was time for the ninety day biopsy, which also yielded great results.

What is eating after a stem cell transplant like?

This became my 24/7 struggle. I knew I had to eat to recover, gain strength and heal, but each time I tried to eat I either gagged, felt like I was going to vomit, and sometimes did vomit. My friends and husband would run out and get anything that I asked for or that they thought might appeal to me, but I could often only get a few bites down a day. I also felt full often because of all the pills I was taking and hydration I was trying to take in. I pretty much lived on broths for a while.

Over many weeks, my taste buds began to improve, but it was a stressful period of a love-hate relationship with food and water. I would often feel like I could eat something, and truly want to eat something, but one or two bites in, I had to stop. I also learned that I was often was being served, out of concern, full plates of food, it would overwhelm me. I requested just one or two bites of each food on a small plate or as the goal of eating everything seemed more attainable.

Why is Day 100 important to transplant patients?

Before you even get to transplant, you hear the term ‘Day 100’ many times. It becomes this large looming event that you work towards. Why is Day 100 so important to transplant patients? Well, during the first 100 days is when the greatest risk for critical side effects exists, when the stem cells have engrafted, and the body has begun making new donor blood cells. I happened to have my biopsy and an appointment on Day 99, and asked the doctor ‘So, what magic happens tomorrow?’ to which the doctor replied ‘I will allow you to begin driving as soon as you feel up to it.’

More about the Stem Cell Transplant:

Acute Myeloid Leukemia: The Stem Cell Transplant

Acute Myeloid Leukemia: Thirty Days after Stem Cell Transplant