Hi Everyone! I have been so interested in learning and writing about other people’s Survivor Stories lately, and I hope you’ve been enjoying them too! However, there’s a topic about my personal experience that I’ve really been wanting to get out into the world for you guys before I post the next one.
When I was getting ready to go into my bone marrow transplant (BMT), I quickly realized how little I knew about the process. How long would I be in the hospital for? What would happen there? Would I be sick the whole time? What exactly did the actual transplant entail?? Would it hurt?
And while I was talking to a friend of mine that was preparing for his own bone marrow transplant, I realized that my experience was not unlike what he was going through. A lot of his questions to me were questions I was asking myself prior to my own BMT. While his doctors had done a great job getting him into remission and getting the logistics of when and how his transplant would happen, like me, my friend had no idea what to expect in the day-to-day of that hospitalization.
This made me think that there are probably a lot of people out there that are about to go through a bone marrow transplant that, while they may know the date of their transplant, might feel as unsure as I did going into it. My biggest fears were always the unknowns. I always wanted the doctors to explain things to me in the bluntest terms possible – no fluff and no sugar-coating. While every BMT is different, I am hoping that this post about my personal experiences will help provide a little clarity for any of you out there that are still trying to figure out what’s to come during your BMT.
This is such a huge topic. I could write pages and pages about how I felt during the transplant hospitalization, my mental health at the time, physical struggles – I could go into challenges like finding a way to shower when you’re too tired to stand or finding a way to cope with having to go to the bathroom in a measurable piece of plastic. But I think that there are two separate posts that I could write here. One of them would be an in-depth look at what it feels like going through a bone marrow transplant, and the second post would be the timeline and a high-level look at side effects, important milestones, and tips to help any of you that are still waiting to start your transplant (or have already started!). In this post, I’ll focus on the latter, and in a future post I’ll dive deep into the former.
First, let’s start with the schedule. Everyone likes a schedule and a checklist right?
And shoutout to all of my AMAZING BMT nurses, one of which helped me remember the specifics of everything as I was writing this!
We planned to refer to my Transplant Day as “Day 0,” and every day around it was to be numbered accordingly. There are several important milestones following the BMT hospitalization itself, but for the sake of giving you some time left in the day after this post I’ll just stick to the actual BMT hospitalization.
- Day -8: Admission
- Conditioning Phase:
- Day -7 to Day -4: TBI (Total Body Irradiation)
- Day -3 to Day -2: High-Dose Chemotherapy
- Day -1: Hydration Day
- Day 0: Transplant Day!
- Day 00: For my specific BMT, my donor cells came in a bit later than expected (this is totally okay!), forcing me to get my transplant on “Day 00”
- Day 24: Engraftment Day
- Day 30: After 40 total days in the hospital – Discharge!
Admission
This day is tough, I’m not going to lie to you. It sucks knowing that you’ve got the entire hospitalization ahead of you. But in all honesty, I was just happy to start the process of getting it over with. After months of waiting – months of getting into remission, Finding My Perfect Match, and waiting for the planning and logistics to be finished – I was just ready to get it done. This day/night is all about getting checked in, height, weight, vitals, etc. Lucky for me, I had an amazing BMT nurse checking me in that night who welcomed me and stayed after her shift ended to explain the process to come. If you’re at this point, you probably know what to expect at an admission.
P.S.- Check out 5 Tips For A Homey Hospital Room to help out with the long stay!
Conditioning Phase
As I said, all BMTs are different from one another. Each one has its own unique qualities, since every patient going through a BMT is different. But for my leukemia, the medical team decided that four days of Total Body Irradiation (TBI) followed by two days of High-Dose Chemotherapy would suffice.
A little side note here for any of you that may not know – we all have cancer cells in our bodies. Luckily, most immune systems are perfectly capable of dealing with these cells effectively. However, for some people’s immune systems, they are unable to get rid of these cells and the cancer cells will multiply and spiral out of control. The purpose of a BMT is to replace the patient’s immune system with a brand new one. This new immune system grows from the donor cells that are received through a bone marrow transplant. Because the new bone marrow cells need a totally clear immune system to call their new home, the Conditioning Phase was essentially to wipe out any remaining cells of my immune system.
Think of it this way, these new cells are totally unknown to the body. They are completely foreign. So if I had any bit of an immune system left, it would try to fight these foreign cells because my immune system would see them as an intruder of some sort. So the Conditioning Phase is meant to get rid of my old immune system entirely, and let the new one set up shop with the least amount of resistance possible.
I have a post about My Full-Body Radiation Experience if any of you are interested! But long story short, I did not have many symptoms from the TBI portion of this phase. The first day, I had pretty severe jaw pain, but by day two of radiation, it was gone and did not come back. I will, however, say that I was VERY fatigued. Like, didn’t-want-to-get-out-of-bed-that-week type of fatigue. But I was psyched that I didn’t get nauseous!
…Until the high dose chemotherapy. The chemotherapy of choice was Cytoxan. I mentioned at the beginning of this post that I was going to try to avoid sugar-coating. Well, my body never agreed with Cytoxan. That was always a type of chemotherapy that caused me a tremendous amount of nausea. Those two days were really hard. I was tired from the four days of radiation that I had just had, and I puked to the point of absolute exhaustion during those next days. But the thing to remember was that it was only two days. Two days and then I’d get a day off. Two days closer to being done.
Hydration Day
This was basically a rest day. A day to kind of recover from the past week of conditioning and get a whole bunch of fluids into my body. Not too much going on, and I was super grateful to have a chance to take it easy.
Transplant Day
Best day ever! Remember the date – this will be your second birthday! The day you get to start life with your brand new (and better) immune system! In fact, I still celebrate mine every year!
My Transplant Day was actually slightly delayed. It was supposed to be on May 3rd but ended up being done at like 1:00 AM on May 4th, simply due to the donor cell’s arrival time.
Considering the fact that a BMT is a crazy feat in medical science, this day is actually somewhat anticlimactic. A lot of people think that a BMT is some big surgery or something. In reality, it looks like nothing more than a blood infusion. It’s a bag hanging from an IV pole just like anything else.
Well…it’s a life-saving bag hanging from an IV pole, so I still thought that was pretty darn cool!
But when my cells arrived, I remember I got a dose of Benadryl to counteract any possible reactions, I held my girlfriend’s hand, and I fell asleep. When I woke up, I was done! And that was it!
I was also really happy to find out that my dad got to press the “start” button on the infusion that saved my life!
From Transplant To Engraftment
This is really where the meat of the hospitalization lies. Lots of different factors decide how long exactly a BMT hospitalization is, but I personally needed to wait until it became obvious that my body was starting to build its new immune system. This is measured through blood counts. If cells like platelets, white blood cells, and red blood cells start forming (seen in lab work), that’s a solid indication that the new marrow is building a new immune system!
Some people go home before engraftment (which I’ll explain later), others go home right after engraftment. Others (like me) stay a bit longer. It depends on the hospital you’re in, the type of transplant you’re receiving, which ward you’re on, and a whole slew of other things. But your medical team should be able to tell you what kind of markers they’ll be looking for prior to you being discharged.
Like I mentioned at the start, I could go very in-depth about this chunk of time. There was so much going on that it would be impossible to capture all of the feelings, the emotions, and the details all in one post. So I’m going to keep this at a somewhat superficial level and just talk about a few side effects I experienced, because for the most part this time is just spent waiting to engraft!
The first milestone in this process is Engraftment Day. Being engrafted means that the new bone marrow cells have taken hold and set up shop in the body. Once engrafted, the new marrow cells can start building the new immune system from the ground up – starting with platelets, red blood cells, white blood cells, and every other biological marker that starts in the bone marrow.
Unfortunately, however, it takes some time to get to engraftment. I was able to engraft on Day 24. Because my conditioning phase wiped out any remnants of my marrow cells, this meant I spent 24 days with absolutely no immune system.
Fun fact, the body doesn’t really like to live without an immune system.
Needless to say, I was feeling the effects. The first of which was that I had no appetite whatsoever. In fact, I was eating so little that I was told if I didn’t increase my caloric intake I would need a feeding tube. That was definitely the kick in the ass I needed. Luckily (is this “lucky?”) I had gotten so used to losing my appetite in the hospital that I had a few tricks up my sleeve. If you need help coming up with some creative food options when you just don’t feel like you can get enough calories in, check out 10 Foods To Eat When You Don’t Have An Appetite.
I also developed mouth sores running from my lips and mouth all the way down my throat. And they stuck around for a couple of weeks because my body had no functioning immune system to repair them until I engrafted. This was probably one of my biggest acute side effects from the transplant process. It was very painful and required pain medication to deal with, and to top it off it definitely made the eating process that much less enticing. On the rare occasions that I did feel like trying to eat, it generally needed to be as cold as possible to try to numb my throat on the way down. A lot of ice chips and frozen Boost Breeze (see the blog post I referenced above for details on that!). I also had a cool damp gauze pad I kept over my lips to help soothe them.
Pro tip: if this happens to you, ask for a white board (or bring one just in case). With mouth sores in the throat, it makes talking very uncomfortable. A white board gives an easier way to communicate!
Fatigue was another ongoing factor during my stay. It wasn’t quite as bad as the fatigue from the TBI, but it was still enough to make me want to lay in bed all day. I swear I’m not trying to just give shoutouts to all of my other posts, but as I’m writing this particular blog post I am realizing very quickly that the majority of my posts can be directly applied to how I dealt with my BMT. So, big surprise, I’m going to link 7 Exercises To Do When You Have No Energy here because some of those exercises kept me from dealing with the side effects of too much time in bed such as bed sores and severe muscle atrophy. Sure, there was some atrophy of course, but I was still able to walk out of the hospital at the end of my stay, which was a huge goal I had set for myself.
This fatigue was not just physical either, I was definitely mentally exhausted too. Being in the same hospital, in the same small ward, in the same tiny room for 40 days is a serious challenge. I definitely started to feel very trapped. It is something that I needed to take day by day, hour by hour, minute by minute. My biggest recommendation here would be to have short-term stuff to look forward to each day (for me it was my girlfriend coming to visit after her classes which I am still SO grateful for), and also have long term goals to look forward to (mine was finishing college once I got out of the hospital). This could be something as simple as logging into your favorite online video game at the same time each day as a reward for getting up and walking around! My dad (who was there with me in transplant every day) and I loved playing NHL together, and my girlfriend and I would play Marvel Lego on XBox. Just something to take your mind out of the hospital, even though your physical body has to stay. For more suggestions on ideas to keep your sanity through a hospitalization this long, feel free to check out 10 Tips For Making It Through A Hospital Stay, where I go more in depth on different ways I was able to stay driven and stay entertained during my BMT.
I also had the classic upset stomach, the occasional fever, and all the other common “my body doesn’t feel great” symptoms, but the three above were the most notable.
This might sound like a lot of stuff to deal with, but honestly the medical team was ready for all of it. Every single side effect I had, they had seen before and knew how to deal with. It still stunk to feel so lousy for so long, but sometimes I feel like the hardest part of my bone marrow transplant was the mental aspects. Staying entertained. Staying focused on the end goal of getting out of there rather than falling into a depressed mindset that would’ve gotten me nowhere. I couldn’t feel bad for myself, I needed to stay determined. Which, again, brings me to another blog post – Maintaining A Survivor State of Mind – that kept me cracking jokes to the nurses instead of complaining. Or focusing on my next goal to walk 15 laps around the unit instead of worrying what side effect I’d have to deal with next. It’s all a mental game that I am really really hoping these other blog posts that I am referring to can help some of you get through!
Discharge!
Finally! Discharge day!
This day for me occurred on Day 30, which was actually 40 total days in the hospital. This, my friends, is an absolutely amazing day. Since I had my BMT at Boston Children’s Hospital, the nurses would throw a “bubble parade.” This was a cute opportunity for me to leave the ward with all of the BMT staff lining the walls, blowing bubbles and cheering me on.
Sure, I was tired, I had that kind of overall gross feeling that comes with staying in the hospital, but I was going home, and I was so proud of myself . I had done what not many others can say that they had done. I had gone to hell and I walked out the other side. For anyone reading this that is about to go through a transplant of their own: I sincerely hope you will allow yourself to recognize what a champion you are and how strong you are. Let yourself be proud.
It’s part of what I preach with the Survivor State of Mind, right? Always believing in yourself no matter what. Knowing that you can do anything. That is something to truly be proud of.
I realize this post is getting pretty long-winded, so I think I’ll stop here. But I hope that this post was able to help clear up some of the timeline for any of you that have a bone marrow transplant in your future! And I hope some of the links I threw in there can serve as further resources for anyone that needs them.
As always, please feel free to reach out to me on my contact page if you have any questions, tips of your own, topics you would like to see covered, or just feel like chatting to someone that’s been through it. I am always here for you.
-Alex
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