COLLECTING MY STEM CELLS
To fully comprehend the treatment plan, I will first need to give you a quick hematology overview. Stem cells are the immature baby cells created in the bone marrow of every person. Basically, these cells “grow up” to become the white blood cells, red blood cells and platelets in the blood. The idea is that since lymphoma is a blood cancer, we needed to fix the root of the problem by destroying the old cells in the bone marrow and putting in new cells; thus getting a stem cell transplant. But before we could begin destroying the old cells, millions of new cancer-free stem cells had to be collected. In order to do that, growth hormone injections had to be taken to stimulate the bone marrow to make more and more new stem cells before they could be collected and frozen for later use.
So, for over a week, I had to inject myself twice a day subcutaneously (under the skin) with granulocytes (the growth hormone factor). Although I only had mild bone pain, I have heard some people experience severe pain when taking growth hormone injections. I used to be so afraid of needles that if I’d been told 2 years ago by the time I’d be done with cancer I’d have injected myself over 20 times, I would never have believed that. Needless to say, needles have become second nature to me.
During this time, the white blood cells should be increasing exponentially and each day, I would go to the hospital and run blood tests to monitor my white count. At some point, usually about a 7 to 10 days after taking the first injection, the white count rises to the required level and then another test known as the CD34 test is done to make sure enough stem cells are present in these white cells.
Around 10 days after taking the first injection, my stem cells were ready for collection and I was admitted to the hospital. First, they had to insert a catheter into a vein in the thigh/groin area under local anesthetic. By that time, my red blood cells and platelet levels were low so I had to be given blood and platelet transfusions before the surgical procedure. While uncomfortable, the catheter insertion wasn’t painful; I only felt a lot of pressure once it entered the vein. However, I did feel pain at the site for several hours after it was put in which was relieved by panadol. The catheter remained in my thigh for the entirety of the 3 days I was hospitalized.
The actual collection process was simple and uneventful. The only minor side effect I had was the tingling and numbness I felt in my mouth, which apparently happens because of low calcium levels, as soon as a bag of calcium was infused in me, I felt much better. The previously inserted catheter had two tubes that hung out for accessibility and so I was hooked to a big machine with colorful wires. One tube would take out the blood and the machine would separate the stem cells, which are yellow, from the rest of the blood. The stem cells would be collected in a plastic bag, while the rest of the blood is returned to the body via the second tube. It is done this way to minimize blood loss, which happens quite often after this procedure. In fact, by the time we were done, I’d already lost a unit of blood and needed another transfusion. After my stem cells were collected and counted I was told they weren’t enough and I had to repeat the process again the next day; which was inconvenient because each collection process lasts about 4 hours. By the second collection, I had a total of 3 million stem cells collected and frozen.
THE STEM CELL TRANSPLANT
People celebrate their birthdays once a year but from now on I will be celebrating twice. Once on my birthday and the other on March 16th. That is the day of my re-birth; the day I had my autologous stem cell transplant. This was the long awaited day; my second chance at a remission and at life. A few days after my stem cells were collected, I was admitted to the hospital to start the conditioning chemotherapy before the transplant. Once you’re admitted, the date and the days of the week no longer mark the days on your calendar. The countdown begins when chemo starts.
On Day -7, I started BEAM chemotherapy, which continued for 5 consecutive days. Day -1 was my “day off” and Day 0 was transplant day. Even though I already had a port-a-cath in my right chest, I was told that the central venous catheter is better to use because at some point I will probably need a transfusion and saline at the same time and since the catheter has 3 outlets it would be better to work with. The central venous catheter insertion was very similar to the one I had in my thigh for the collection, except this one went in the left side of my chest, just under my collarbone.
I was expecting an uneventful process where they thaw and infuse my previously frozen stem cells back into my body through the central venous catheter. That did not happen. I had a lot of nausea due to the DMSO, the chemical used to freeze the stem cells. It smelled a lot like garlic but that didn’t bother me. What made me nauseated was the burning feeling I got in my stomach; which I think was from the DMSO. I had a total of 5 bags of stem cells infused and I threw up right after the second one. To top it off, I was having tachycardia (fast heart rate) episodes where my heart would speed up to 170 bpm with each bag infusion, leaving me exhausted by the time it was over. It is a very rare occurrence apparently but since I’ve been previously diagnosed with Supraventricular Tachycardia it wasn’t too shocking. It was not a fun day for me but I suppose being born has to be difficult in order to appreciate it. However the good news is, all symptoms improve as you go along. So the worst were the infusion of the first two bags and then the nausea almost entirely went away by the 3rd and the tachycardia was better maintained by the 4th.
BEAM side effects started almost immediately after I was given the last chemo infusion (Melphalan). The fatigue hit me right away and until I engrafted, it was difficult to get out of bed on most days. I started losing my appetite by Day -2, but by Day 0 I was already down to eating just one meal a day. When the nausea hit on Day +2, whatever was left of my appetite was gone. However, the doctors and nurses were wonderful; I was given Zofran and Primperan every 6 hours but unfortunately that wasn’t enough to keep the nausea at bay. On 3 consecutive nights, the nausea was so bad I was given Benadryl to put me to sleep after all anti-emetics were exhausted. I was told the nausea would be bad during this phase of the treatment but since it was so well controlled during ABVD and ICE, I assumed I probably wouldn’t worry too much about it. I was wrong. By Day +4 I had completely stopped eating and was put on TPN (total parenteral nutrition) for the rest of my stay at the hospital.
On Day +2, my ANC (absolute neutrophil count) was zero, which means all my defences were gone and if I were to catch an infection my body would not be able to defend itself and extra safety precautions had to be taken. Acid reflux reared its ugly head once again. The nausea was already making me miserable and the heartburn just made it worse. Being unable to eat and on an empty stomach at the same time made it near impossible to handle. The acid was burning through my stomach and I couldn’t eat to relieve the pain. I tried once; I had a dry piece of toast and threw it right back up. I was on Nexium, Zantac and I was sucking on Maalox tablets and I constantly slept at a 30-degree angle but nothing helped. Unfortunately, this was just one of those times where I had to wait for my white blood counts to go up to repair the stomach lining and restore the mucosa.
The mouth sores made an appearance on Day +2 which made swallowing very uncomfortable at times and that also took part in my lack of eating and drinking. I was lucky to get away with moderate mouth sores though; I know it can be a huge problem for some. I cannot stress on how important it is to gargle religiously. I had to gargle 5 to 6 times a day and I truly believe that helped control their severity. Mind you, I hated gargling with a passion and I tried to get out of it on so many occasions because with the nausea it was a real effort not to throw up each time I gargled. Despite this I stuck to the routine thanks to my husband and nurses; which really helped in the long run. When you’re living with discomfort and pain it’s nice to have a win no matter how small it is.
My red and platelet counts were very low for about 6 days and during that time I needed several blood and platelet transfusions. This was the most humbling experience by far for me. I needed several blood donations and having many of my family, friends and friends of friends, some who were strangers to me, come to my aid was the greatest act of love and selflessness anyone could have shown and I am so incredibly grateful there are such wonderful people in this world.
On Day +8 my WBC count started going up showing signs of a successful engraftment. That is what all the doctors were waiting for. The high dose BEAM is given to obliterate everything in its path; all that is good and bad. This is only done when a transplant is to be done right after. Without the transplant, a person would not survive the chemotherapy. The new, clean stem cells are expected to travel to the bone marrow and start producing healthy white and red blood cells and platelets. When the stem cells engraft, the white blood count starts to go up, with the red blood cells following suit and eventually the platelets. The good news extends to the side effects as well. Once engrafted, I started feeling much better right away. My intestinal lining was able to repair itself, the mucosa was finally restored and the acid reflux decreased immensely right away. Nausea was automatically alleviated and it was better controlled with just the Zofran and Primperan. I was still unable to eat though and relied completely on the TPN.
I stayed at the hospital for 22 days, in isolation most of the time. Being in isolation means that you’re only allowed one visitor at a time and anyone who enters the room has to gear up fully in a mask, gloves, head net, robes and a shoe cover. This is done to protect you from any germs your visitors might be carrying since immunity levels after a transplant are dangerously low. Risks of infection are at their highest during this time so it’s crucial to turn away guests who are ill and in general always ask visitors to keep their distance. Although a fever and infection are much anticipated during this time, I was lucky enough not to catch anything. On second thought, I believe I didn’t catch anything because my husband who was with me during my stay was dedicated to keeping my room germ-free.
I only stayed at the hospital for 22 days because I was lucky enough not to suffer from complications or infections after the transplant but I know people who have had to stay in there for much much longer. 22 days might not seem like a lot but they can be really difficult to get through when surrounded by four walls for most of that time. I never felt claustrophobic before but by my third week, there were times when I felt the walls were closing in on me and since I couldn’t leave my room the only thing I could do was close my eyes, take deep breaths and pretend I was somewhere else. I’d imagine myself back in the Maldives, where we went on honeymoon. I’d do that until my heart rate went down. There was one time when the claustrophobia hit especially hard; I felt very dizzy and out of breath. What I did next is not something I encourage, but I have to be honest. I knew it would be dangerous and put me at risk of infection but I was alone in my room and the temptation was just too great. So I walked over to the balcony and briefly opened the door. It was March and as soon as the cold air hit my face I felt instant relief. Luckily, I did not catch anything.
I knew it was going to be a long hospital stay so I was not shy about bringing along my play station, books to read, my laptop which was loaded with movies and music, my coloring books and tons of board games. It was a running joke on how I packed my room when I was admitted but you’ll be surprised by how quickly you could get bored of one thing when cooped up in a room. During the earlier days before the chemo kicked in, I played a lot of Fifa on my play station and even got the nurses and residents to play with me when they weren’t working. When I had friends over, I’d pull out the board games. Sometimes, on days which seemed to drag on, my husband and I would play Battleship for hours. When stress levels were high, I’d spend the day colouring while listening to music. This I found to be particularly therapeutic. Sometimes, when I was slightly nauseated I’d read to distract myself. My favorite time of the day was at night. It would get quieter in the halls as visitation hours end and my family who’d be visiting me during the day would go home. My husband would then turn off the lights in my room and we’d pick a movie or TV show to watch. My favourite show to watch as I fell asleep was Planet Earth II. I don’t know what it is about David Attenborough’s voice but it is incredibly soothing and coupled with the Benadryl, I cannot imagine falling asleep to anything better. This was something I looked forward to every single day because no matter how bad the day was going to be, I could always depend on our little nighttime routine. Mind you, the nausea never stopped after 8 pm, it just felt better because I always felt transported someplace that is not the hospital.
If you are about to be admitted for a transplant make sure you keep yourself pre-occupied because since you don’t have the best conditions around to keep you positive it’s easy to sink into depression when you’re in there. Draw your positive energy from everything good around you: friends, family, music, movies, books, faith if that is important to you and mostly from yourself. Take pleasure in the smallest things like having enough energy one day to get out of bed and walk around the room. Be thankful of each hour that passes without infection. Try not to think of where you are and how much it sucks to be stuck in a hospital or feeling sick all the time and most days this will be easier said than done. The worst part is when you’ve been feeling so sick for so long and assume it will never get better. That is when the fear sets in and then you think you can’t do it anymore and you want to give up. Don’t. It ends, I promise. It is just a part of the treatment, probably the worst part but only a PHASE. Some days will be very difficult but always remember that it will come to an end; the light at the end of the tunnel is so near.
“Some days there won’t be a song in your heart. Sing anyway.” – Emory Austin