Recovery from my transplantation has been, beyond a doubt, the most emotionally and physically taxing part of this whole process; but also the most magical.
Conditioning chemotherapy and transplantation: the immediate side effects
I was lucky and did not have to undergo TBI (total body irradiation) like others often do when conditioning for the actual transplantation. However, that doesn’t mean that recovering from the conditioning phase of chemotherapy — an extra high dose of cyclophosphamide mixed with busulfan — was an easy task.
As these medications affect the fast growing cells, and I had pain in my belly through the first two periods of recover, I had a quite painful and shocking incident wherein I was having extreme belly pains plus a fever. On top of that, I ended up having an allergic reaction to the antibiotics I was given for the fever. Aside from that, most of the time spent in hospital recovering from chemotherapy and transplantation was spent sleeping a lot, and eating barely anything. This was very hard, I won’t sugar coat that, but it’s possible to get through it with a smile. It’s a choice, and I will preach this time and time again. Yes, there are issues and infections that come up in the recovery process, as the stem cells take their time to engraft. There is no doubt about it that this is one of the most difficult and dangerous times. But I chose to take it with a smile.
The easiest and most important way to do that, for me, was to make sure that my hospital room was a place that felt like home, temporarily. My recovery time was during the Christmas holidays, and I was lucky enough to have my family around to come and decorate my room for me. Seeing not only the cards and letters of encouragement from family, but also a little Christmas village on the table in my room kept my spirits up. I made an effort to encourage my family to come with stories about their adventures in the city, or to keep me informed about what was going on back home in Canada. When days felt difficult, I would make a point to sing the songs from my teenage years that always put me in a good mood, and brought back memories from those days. And on nights I couldn’t sleep, I would put in my earbuds and watch my favourite romantic comedies, especially the holiday ones! I mean who doesn’t love a good dose of Love Actually around the holidays?
There is no doubt about it that the transplant is one of the most difficult and dangerous times. But I chose to take it with a smile.
Going home and my chimerism test
After spending a quiet, lonely New Years Eve with my sister in hospital, and then another seven days to recover from extreme dehydration, I was given the go ahead to go home, for good.
Nothing was quite as exciting as walking into my new home with my fiancé. During the first few months of home recovery, I continued to take a mound of medication daily, and slept quite a lot. I was blessed with an incredible fiancé and caregiver, who always made sure I was taking my medication, eating, and getting enough fluids — or at least as much as I could manage. I spent a lot of days in our California King size bed, but oh how I was grateful to be in my house, around my stuff.
In February, just some 60 or so days after my transplantation, it was time to do a chimerism test. Now what I know about this test is that it basically shows how many of the blood cells are from the donor, and how many of your own cells are left. My doctor said that the highest possible result is greater than 95%. With telling me that, he also shared that my results were just that: greater than 95% donor cells. Given my status as a stem cell transplantation recipient, I can definitely say that this was one of the best days of recovery.
Graft-Versus-Host-Disease (GVHD) … um, what?
Something that my medical team had mentioned pre-transplantation was the fact that, post-transplantation, there is the risk of developing GVHD. Basically, this means that the new stem cells from the donor are working a bit too hard, and seeing the recipient’s body as foreign. My doctor told me that a bit of GVHD is a good sign because it is a tiny proof that the transplantation was successful — that the new cells are fighting, so, in theory, they associate this with the cells having also attacked any remaining leukaemia cells.
While GVHD is a good sign, it is not a fun one, that’s for certain. Before being hospitalised and put on IV feeding, I spent seven weeks with unbearable stomach pain and less-than-solid bowel evacuations at a frequency I didn't know was possible. On top of that, one of my medications caused serious nausea and vomiting. When my symptoms finally met the hospital’s standards for further investigation into GVHD, I was scheduled for an emergency colonoscopy whose pathology report confirmed the suspected diagnosis.
I spent five weeks in hospital being treated with steroids; I was put on NPO for 48 hours — which means no oral intake, not even water; I was given IV protein and nutrients; and finally, I was allowed to slowly start reintegrating liquids and food into my diet. This was probably the most difficult part for me as I love food of all kinds and it had been so long since I’d been able to eat anything I craved. Honestly, it had been so long since I’d been able to keep a meal down.
This all sounds horrible, but again, I managed to go through this hospitalisation with the biggest smile on my face. My fiancé visited every day and we would do laps and laps around the hospital; we would watch movies and funny sitcoms; we were even able to have some sleepovers when I had a room to myself. When he wasn’t around, I was writing, or reading, or watching Gossip Girl. (And no, I am not ashamed to admit I watched the series from start to finish during this stay!) I always had my handy dandy Hello Kitty blanket by my side, and wrapped around me when I left the room and the nurses loved to see me walking around. They would say that they loved it when patients would get really bored and stir crazy — this sounds so strange — because it meant that they were feeling better. And they were right, I was feeling great.
I was able to go home by the end of March to celebrate my birthday with family who had flown into Amsterdam to celebrate with me. It was the most wonderful gift.
First my gut, now my lungs?
In July of 2016, I was hospitalised for a fever and low oxygen saturation. I was in hospital for a week, on oxygen. Once my oxygen levels regulated themselves and my fever was gone, I was sent home. Until late August I was experience difficulty breathing and catching my breath after any kind of activity. My mom made (what we then called) an emergency visit to calm me and give me love, as well as join me at my doctor’s appointments. After speaking with my hematologist, doing a pulmonary function test, and meeting with a pulmonologist, the consensus was that I would need treatment for GVHD in my lungs.
It’s been nearly a year since I started treatment for GVHD of my lungs, which sometimes feels completely experimental. The FAM regiment I am still on (Foster inhaler, Azitromycine, and Montelukast) is entirely experimental in the United States at the moment. But I will keep a smile on my face, through all of this, because you know what? I'm still here, and I plan to be for a long time. In the last year, since that diagnosis, I have become a wife and will be going back to school in September.
As my counsellor says, I was given the time so I damn well should make use of it!