I have been working overtime to catch up on what haematopoietic stem cell transplantation (HSCT) is, how it works, what I will go through and more. I asked my doctor to send me the clinical neuro paper with efficacy, outcomes and charts because I needed more information than what I found on the National MS Society’s page. Bonus: I have two brilliant, scientifically-minded sisters who could help me interpret the hieroglyphs. The paper was promptly forwarded their way for interpretation. You can access and read the peer-reviewed publications on HSCT.
Step 1: Harvest
First off, I am not a doctor so I apologize in advance if by boiling this process down I lose some of the mystery and magic of scientific jargon. Once I have gone through the 8,348 insurance approvals (shout out to the team who handles this, I love you!) I will begin the process to harvest my own stem cells.
I will receive a central venous catheter which is referred to as a ‘trifusion catheter’ in my chest. My therapist told me I should stop saying “big gaping hole in my chest” and perhaps select a nickname since language has power and I was definitely freaking myself out! She was right. I initially thought Medusa, then a friend suggested Ursula but I was seeking a positive name with less villainy vibes. Shout out to Maggie for coming up with Inspector Gadget. What child of the 80s doesn’t have a clear association with Go Go Gadget Arms?
After Inspector Gadget is inserted, I will start my outpatient care at the Taussig Cancer Center at Cleveland Clinic. I will have one long day of chemotherapy (probably 10 hours) and then begin subcutaneous injections the following day for several consecutive days. The chemo sends my bone marrow into overdrive and the injections are a drug that push my newly created stem cells from my bone marrow into my blood stream. This may be an overwhelming process but damn, science is cool.
I will go daily to the cancer center for blood draws (also through Inspector Gadget to save my veins) to check blood counts and levels. When I’ve reached a magical clinical point, I will head back to Taussig for apheresis — which is a very fancy word for “stem cell harvest.”
I’m told this can take several days but MS patients usually collect in one day. I’ve heard a variance in numbers but the most common is 5 million. My stem cells are collected and frozen. You cannot move during the collection process — not even to go to the bathroom — so we shall see how that goes and the indignities I will suffer since I go to the bathroom a lot! What fun content to look forward to.
Step 2: Wait some more
After harvest, once my stem cell count is confirmed, Inspector Gadget goes bye bye. I then have at least two weeks rest. This time is for my immune system to chill out and recuperate from the chemo and from being sent into crazy production mode.
Step 3: A looooooong hospital stay and transplant
I check into the hospital for a long stay… three weeks at minimum. When I accepted a job at Cleveland Clinic five years ago I never imagined a long term stay at my place of business but here we are. I will get a PICC line placed in my arm for blood draws and medication administration once again to save my veins. I have my own room and the website copy reads like a hotel brochure… I am not fooled.
I will receive a week of system-annihilating chemotherapy to wipe out my current immune system. This annihilation is so intense that six months post transplant I start my baby vaccines all over again. (I guess the malaria and yellow fever vaccines I received in 2012 to hike the Inca Trail in Peru are also gone.)
At this point my stem cells are thawed and put back into me. Newsflash: I hear from other HSCT patients that this is very anti-climactic. After all you’ve gone through to get to this point, the transplant takes about 45 minutes. Go figure. I stay in the hospital, taking 7,387 drugs (maybe a slight exaggeration) and watch my blood counts like a hawk.
I’m told the day of true excitement is engraftment when the blood-forming cells you received on transplant day start to grow and make healthy blood cells. It’s an important milestone in the transplant recovery process and the patient feels better.
Step 4: Recovery
With a few clinical indications (I’m sure I will learn the specifics later) I get to go home. I will be on a drug cocktail of antibiotics, antifungals and antivirals as well as steroids.
I’m told this is arduous at best, brutal at worst. I’m not going to sugarcoat it – I am told repeatedly, you could die. I have come to think of the mortality risk much like signing away my life when I went bungee jumping or when I went skydiving and neither of those had benefits like this does.
I don’t use the word hope lightly. Since my diagnosis nearly nine years ago I have waited to get worse and I’ve seen that come to fruition rapidly in the last three years. I know this is going to be hard but I am hopeful. I’m thinking about travel, hiking and a life outside of my limited mobility right now for the first time in years. Who knows if that will happen but thinking it might and it could work to improve my quality of life and function, is one hell of a gift. Hope is a beautiful thing.