Few days ago was a significant and historical moment that took place in my own life. It is an important milestone because it was my first re-birthday. My immune system is over a year old now. Exactly a year ago, I was stuck in the hospital going through a stem cell transplant. It gave me new stem cells, new immunoglobins, new antibodies, new platelets, new white blood cells and most importantly- a second chance to live. I was given a do over. I went through a rebirthing process literally and figuratively. It took me a while to be able to sit down and write this post because it was the most physically and mentally demanding part of the treatment that I have ever done. I have been putting off writing this topic for months, which is also the reason why it has taken so long for me to finalize everything before my entire blog goes live. I am not going to lie- it's just hard to write about this because it is so triggering, even until now. I am not even sure whether I will be able to write everything in one day so I will probably stop and resume this post at a later date. Let's see.
For those of you wondering what a stem cell transplant is- it is essentially an intense procedure used to treat aggressive blood cancers or autoimmune diseases. In my case, my lymphoma relapsed shortly after the first line of treatment. For diffused large B cell lymphoma, the stem cell transplant is usually the second line of treatment and apparently an effective cure for my case. To put it simply- my own immune system tried to kill me. My weak immune system made it more vulnerable for my cancer to come back. So we decided to punish it by wiping away its existence and replacing it with a new one.
Before starting the stem cell tranplant process, it is important to reach remission as close as possible. That meant going through a few rounds of intense salvage chemos. The closer you reach to complete remission, the more effective the stem cell transplant as well as your prognosis.
Afterwards, you are given a high dose of chemotherapy between four to seven days in a row (every hospital does it differently) with the aim to blast your entire body on a cellular level. This will wipe away everything clean but destroy your bone marrow in the process. This means that your body stops producing the necessary blood cells, which are crucial for fighting off infections. That is where the stem cells come into play and replace all the destroyed old blood cells with new ones. Your body will slowly recover, make new cells and rebuild things from scratch. It is a long process but you need to be extremely careful and treat yourself with lots of care during the recovery phase.
So I thought I would now dive into my own experience during the entire stem cell transplant treatment. Most stem cell patients require a stem cell donor but in my case, I went through an autologous stem cell transplant. That meant I used my own stem cells instead of somebody else's.
During my pre stem cell chemo rounds, I also went through a harvesting phase- where I went to the lab to get my stem cells collected. This took approximately 5 hours because you need as many stem cells collected as possible. It wasn't a painful process. You just had to sit still on a chair and wait for time to pass by. The process is really similar to donating blood. A needle gets inserted into my right vein and blood travels into this machine (see picture below). It then filters out the stem cells that are collected into a bag. The remaining blood then travels from this machine back into the vein of my left arm (which is why a second needle tube inserted in my left arm). Afterwards, the bag of stem cells are stored in cooling area, so that they are protected and taken out when the timing is right.
Fast forward to two months- my stem cell transplant started off with a high-dosage chemo known as the R-BEAM regimen. Most people usually have the BEAM regimen but because mine was an aggressive B cell lymphoma, research findings have shown that there is a higher success rate when combining BEAM with the R agent (Rituximab- a type of antibody immunotherapy drug).
For me, the chemo regimen was split into 5 days. The first day of the high dosage chemo was the day that we started counting down to day 0- the day when I get my stem cells. These are known as the minus days. The following days after my stem cell transplant are known as the plus days. That is why it is like a rebirth. To illustrate this, allow me break it down on a day to day timeline based on my own experiences.
Day -7: Rituximab (the R from R-BEAM). This infusion took around 5 hours and on that day, I was still an outpatient. I was allowed to return home after I was done. No overnight hospital says required. I then returned to the hospital the next day to continue the rest of the treatment as an inpatient. I did not feel any side effects at this point other than cravings for pizza and pasta. Rituximab always made me look yellowish/ pale but that went away the next day.
Day -6: Carmustine (the B from R- BEAM). I was admitted as an inpatient that day. The Carmustine infusion took two hours. At that point I wasn't in the isolation unit just yet so I was still sharing a room with another patient.
Day -5: Melaphalan, Etoposide and Cytarabine (the EAM agents from R- BEAM) This was the longest day of chemo infusions ever. I first got the Melphalan infusion and apparently it is one of the strongest chemo agents, which causes strong side effects like mucositis (mouth sores, throat pain, stomach pain- affecting the entire digestive tract). In order to minimize these side effects, I was given ice lollies to suck on during the Melphalan infusion. I felt pretty sick of ice lollies after an hour. Then I got Etoposide and Cytarabine infusions twice a day. It was pretty much the same routine for days -4 and -3. I had infusions from 9am all the way to 10pm. It was intense. I was overwhelmed and wondered how the hell my body was supposed to tolerate all of this. I was tempted to call my parents so that they could pick me up from the hospital. At this point I started sensing mild symptoms like drowsiness, sore throat and weight gain. I only gained 3kg but it was due to water retention from the infusions. They had to inject a saline so that I would go to the toilet more often. The weight gain was uncomfortable to the point that it put pressure on my joints and swollen feet. I struggled to walk.
Day -4: Etoposide and Cytarabine On that day, I moved into the isolation room. At that point, my blood counts started to drop, which was expected. And that was in fact the goal of the regimen. Nothing new to report here.
Day -3: Etoposide and Cytarabine This was the last day of my chemo infusion and hopefully FOR GOOD. My appetite was still ok. Just feeling bored and tired.
Day -2: rest. My stomach started to hurt and I experienced a bit of bloating. Thankfully, I was given some medication and I felt a bit better.
Day -1: rest. My stomach pain was still there but not as bad as yesterday. I lost my appetite, my mouth and tongue are swollen and my mouth became dry. So I drank as much water as I could.
Day 0: Stem cell infusion (it took 10 minutes) It was quite an underwhelming experience. It took about 10 minutes and during that period, my blood pressure and heart rate was constantly monitored. My throat was slightly itchy which is a common reaction as a result of the substance mixed into the stem cells. I was given cough drops which made things better.
Day +1: Blood counts dropped to 0. My mouth was swollen and my throat was burning. I was on morphine in order to manage the pain. My appetite was still barely existent so I only managed to eat some pudding, soup and plain toast. My stomach felt funny but not painful, but because of that I randomly puked. Prior to the stem cell transplant, I have completed a total of 10 cycles of chemo and three types of chemo regimens. I have never puked back then but because this was the strongest chemo given to any human ever, I puked for the first time...
Day +2: Stomach started to feel better. Mouth and throat are feeling worse to the point that I was struggling to eat and swallow stuff. The nurses upped the dosage of my morphine. I also lost 3kgs overnight. I was already slightly underweight since cancer happened but at this point, my weight was down to 48 kgs and that was way too low for my height. It was a sad sight. Mentally, I was struggling and I felt super miserable.
Day +3: This was the worst day for me during the entire stem cell treatment. I felt super drugged because of morphine. I was given higher levels of morphine because I couldn't even drink water without crying my eyes out. So I ended up getting nutrition IV via my port (not the feeding tube ). I couldn't even talk anymore and just ended up napping so that time could pass by quickly. Also, I caught a fever of 38.8 degrees Celsius.
Days +4 and +5: Still struggled to talk and swallow stuff but thankfully with the antibiotic medications, my fever disappeared. I was also given platelet infusions on that day. Up until that point, my blood counts were still at 0. But I randomly puked again at least once a day over the past few days.
Day +6: I started to feel a bit better. I managed to eat yoghurt and took sips of water even though the pain is still there, but it became more bearable.
Day +7: My energy levels are coming up and I felt less sick compared to the last few days. This was du7e to the fact that my blood counts started to go up. It was at 0.2 (200 cells). This meant that my stem cells are starting to make new blood cells. My immune systems started to rebuild itself. Things are heading in the right direction. The white blood count is an important indicator as they are responsible for fighting off infections. Once my white blood counts are above 1.0 (1000), then I am no longer in aplasia (the phase where you are at high risk for infections).
Day +8: My white blood counts are at 0.3
Day +9: My white blood counts are at 0.6
Day + 10: My white blood counts are at 0.8
Day +11: My white blood counts are at 1.7. And that was the day I was discharged from the hospital meaning I returned back home and was reunited with my family on that day.
I could continue going on but one thing I could sum up is that once the white blood counts started to go up, you will start to feel better. You will immediately sense the difference on a day to day basis. Even if you haven't fully recovered, you will definitely notice every little difference and any small progress already makes a huge difference. Now that I have made it past the 1 year post stem cell transplant mark, it is seriously amazing to reflect back on how how far I have come.
I went from feeling super fatigued, having difficulties getting up and walking to the bathroom; feeling out of breath, struggling to eat one proper meal a day; being bald and bloated, sleeping all the time; to being off most meds, taking daily 5km walks, cycling up to 22km, completing 1000 squat challenge; as well as intense kick-boxing and tabata workouts, singing physically demanding songs, getting my appetite back, having thick wavy hair, building up my muscles, getting my childhood vaccinations, returning to work, starting therapy and catching up with friends again. It is a long process but I believe that things will slowly get better. It just takes a bit of time. The timeline may differ from person to person but I do believe that it is possible to heal and recover.
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