Day 0. Transplantation day; what a bittersweet day it is. I’m writing this update only because I’ve been given some strong medications to keep my nausea, body aches, head aches, and fever at bay. Over the past few days, I’ve developed what is known as ATG serum sickness. Basically what this means is that my body, since it has been primed to ATG from the last attempt at transplant, is freaking the eff out and having a complete systemic reaction to the flooding of a massive amount of ATG into my system. Because of this, I’ve been nauseous, febrile, achy, tired, dizzy, you name it! We’ve been juggling and balancing between many different kinds of drugs — some that ease nausea, some for pain, others for more intense pain — to keep the symptoms like fever, sore jaw, headaches, etc, in check. The serum sickness will eventually go away, but until then my care team is working with me around the clock to alleviate any pain and nausea I have.
Today’s the day! Not going to write much more because I’m super tired, but I’m getting two bags of PBSCs totaling about 3.6×10^6 cells/kg of my weight. The average range is between 2 – 5×10^6 cells/kg, with 5 being the more optimal number of cells. There’s no direct correlation between engraftment success and number of cells above a certain threshold, which thankfully we’re above. My recovery time might be a bit longer, but we’ll just have to see.
Wow. Wow wow wow wow wow. What an effing day! I am beyond words with how many bursts of emotion I’m feeling right now. I can’t even being to explain how truly humbled, elated, blessed, happy, ecstatic, pumped, relieved, hopefully, excited, awestruck, and moved I am. The influx of support and words of encouragement that have gotten me through today have been an incredible boost of energy and positivity that made the day go by so wonderfully, without any major hitches!
The day started off early with me greeting the sunrise (and 5:30AM vitals). I showered, got dressed, had a full breakfast — see below — and was ready for the transplant to begin at any point in the morning.
Turned out the bone marrow center wasn’t open until 9AM and then there was a hang up with the pharmacy to get a mannitol order through (I needed some mannitol an hour before the transplant to help facilitate the transplant since I’m AB+ and my donor is B+… something about using a forced alkaline hydration/mannitol diuresis regiment to reduce fatal hemolytic transfusion reaction see here). Basically it helps reduce the possibility of cross reactivity of blood types since my donor is a different one, even though I’m the universal acceptor type (I think by helping coat cells with the sugar mannitol to reduce cross-reaction? Don’t quote me on that one. I need to do more research). We wouldn’t want the donor marrow to freak out and start hemolysing.
So then, I ordered lunch, had my nurses bring in the station bike and biked for 20 minutes, finished a movie called “Chef,” and made the most of the time I had to wait.
Finally, around 1PM the mannitol arrived and we got the show started. During that time my friends Matt Ogawa and Matt Cook stopped by and ended up being here for most of the transplant. We chatted, played UNO (compliments of Susie Wheeler), enjoyed mini powdered donuts Matt Cook had brought (OMG SO GOOD), and had a gay ole’ time!
Needless to say, even with my chemo brain, I still managed to win a game or two. It was so much fun! And the time passed pretty quickly.
When the marrow finally arrived it was seriously too good to be true. All of these months building up to these moments, all the anticipation finally getting to see its release! (Get your mind out of the gutter…).
I had the pleasure of working with two lovely ladies — Yvonne and Kathryn. Both very talented, kind, wonderful human beings skilled with the ability to work quickly, concisely, and seamlessly together. They were just as pumped about this as I was! Nerves were fluttering all around the room! Especially in my hands!
The transplant itself, once under way, was a very passive procedure. The marrow and a saline bag are connected to a filter tube which drips downward due to gravity into tubes that connect to my Hickman catheter. No use of pumps, pomp, or circumstance. Just good old fashioned gravity. Once one bag was finished, we flushed the remaining bits with saline, and loaded up the next bag until all four bags of bone marrow were transfused into my body. FOUR BAGS. That came out to a total of 1.67L of bone marrow. Think of a two liter soda bottle that an annoying roommate took a drunken swig out of and stuck back in the fridge. That much marrow. It’s crazy to think that I have that now. In my body. Floating around. All of those little cells finding their new niches and homes in their rightful places, to rest happily while they proliferate and help restore my body to its rightful “normal” functioning capacity. And to think my donor donated that much! I hope he’s a big guy cos dayummmm!
I was telling Matt and Matt that even after the first bag had started transfusing, I started to feel more energized, my brain felt more engaged, and I felt more active! Granted it was probably due more to the adrenaline, but still. This stuff is legit! Even now as I type, I find I’m making less mistakes and my creative brain is spinning wildly. I’m ecstatic with happiness! 🙂
To add the icing to cake, my a cappella group from college the Dear Abbeys recorded and sent me a little beautiful ditty from the ICCA competition! I’m so, so proud of these guys and so damn grateful for their beautiful voices, talent, and care of the old folks!
Thanks guys! You really know how to make an old man find his groove again!
To add the literally icing to the cake, the nurses at 11 Long ordered me a little Happy Re-Birthday cupcake and sang me to me as I blew out my unlit (fire hazard no!) candle. They are such a wonderful group of people. I can’t rant and rave *enough* about them! All of the staff from admin, to pharmacy, to the nurses, to NPs, to interns, and attendings. Everyone I’ve met has been amazing and responsive, kind and genuine. I feel so incredibly blessed!
The day ended five hours later with more vitals and a very happy, excited farewell to both Matts and my nurses, and now the night shift takes over. The last things left are another mannitol transfusion, more vitals at night, and then the schedule resets at midnight this time with a slightly altered chemo schedule. More on that later.
With calls, texts, Facetimes, messages, and emails throughout today, I truly felt all of the love you guys were sending. All of that positive energy, your prayers, your thoughts did not fall on vain ears. I believe every single one of you helped me succeed through today and I’m incredibly thankful for you.
Thank you for your strength when I thought I couldn’t keep going. Though I don’t talk about it at all on this blog, there were numerous times this past week and in the past few months when I just wanted to give up, throw in the towel, and forget it. But it’s with all of your constant love and support I was able to make it through today, and again I will make it through tomorrow, and the day after, and the day after, and for many more days to come. So, thank you. Thank you from the deepest, depths of my heart.
So what’s next? The upcoming weeks will probably be the most trying of them all. My blood counts will continue to crash as my body adjusts to this new immune system, but with my amazing support team monitoring me 24/7, I should be well taken care of. It will take about 5-6 days for the new marrow to engraft properly, and then 15-20 days for the marrow to flourish and start picking up my blood count numbers. But I’m not afraid. I’m ready for this. It’ll be a slow, steady process, and I’m ready to fight tooth and nail each step of the way. Cos I’m a fighter, not a quitter.
Well, today’s the day. I woke up when the night nurse took my vitals and haven’t been able to go back to sleep (for obvious reasons). So much excitement, so much anticipation for such a simple procedure.
To quickly break it down for you, yesterday my donor donated his marrow — most likely a removal of marrow from his iliac crest (lower back) — in volumes of 50-200mL (a pretty significant and painful amount). From there his marrow was probably immediately stored on ice and/or treated with sometime like EDTA or heparin to reduce the amount of clotting that naturally occurs with blood products. It was then shipped to UCSF and probably arrived late last night and is being processed in the blood bank. They’ll irradiate if needed (though I doubt they want to get rid of anything from his marrow since my blood type is compatible with mine), check for cell population distributions, health of the marrow, and then give the okay to transplant.
All of this information is still up in the air and unknown to me. I don’t know how much marrow I’ll be getting, thus I don’t know when we start or how long it’ll take. My projection is that we’ll start sometime in the late morning and run into the mid-afternon. I’ll keep you posted.
As I look out my window on the dawning sun, it’s amazingly humbling how beautiful life is. With Adam whirring quietly in the background, I can’t help but think of all the individual lives that slowly starting to get their days started with other lives have been running full speed and are now winding down. The synchronicity of what we call human life is something so precious and powerful. I’ve come to appreciate it more and more as I grow older, aside from the uniqueness of each person that makes up the milieu that surrounds us.
The Bald Heme-iola 