Day -3. The past few days have been quite challenging, hence why I haven’t posted anything since being admitted to the hospital for my second transplant. Right now, I’m sitting in bed getting my second of three doses of rabbit ATG, and later tonight around 10PM, I’ll be getting my third of four doses of fludarabine and first of two doses of cyclophosphamide (plus mesna to prevent bladder damage, which if you recall = tons of peeing, all the time).

Yesterday and all of this morning were hard. During and after my first dose of rabbit ATG, I had really, really bad rigor (basically body shakes similar to if you were plunged into an ice bath, teeth chattering and all) and I kept spiking fevers with painful headaches and body aches. All night long I was toggling back and forth between being too “cold” (even though I was feverish) and being too hot. Rigor is a common side effect of ATG chemo, which I knew would be a possibility. Since I didn’t react poorly to it last time I was in the hospital, it seemed like I wouldn’t have a bad reaction to it this time — turns out that’s not true. To help calm the shaking down, I kept getting and am continuing to get doses of demerol which works like magic and stops the rigor pretty quickly.

My doctor thinks the reason why I’m reacting so sensitively to the ATG this time is because my immune system is basically “primed” to responding to the ATG. There are memory B cells and T cells that, when challenged with ATG, have been upregulated and induce a massive cytokine storm which is what’s causing the fevers, achiness, and rigor.

Moving forward today and tomorrow, my care team has decided to drastically up the ante on medications and significantly slow down the rate of ATG infusion. So far today, I’ve been doing much better than yesterday. I’m getting loads of steroids. opiates, and antihistamines on a schedule to hopefully reduce the discomfort of the whole chemo process. I’m hoping that because the chemo is really taking my body to town, the stem cell graft will hold and flourish happily in my beat down body.

In other news, Ricky has been with me here this whole weekend and we’ve binge watched six of the eight Harry Potter movies. What a great way to pass the time. 🙂

Day -16. Wait a minute. Wasn’t last week day -16? Yeah, it was, but not anymore. When confirming the official date with my donor, they requested to move the date back another week. So here we are, at day -16. Again.

I’ll keep this post short and just share some thoughts and lessons I’ve collected along the way through this “journey” —

• Patience is a virtue. A virtue that I’ve not enjoyed acquiring that much, but it sure helps keep me sane.
• Yes, it is possible to eat too much pastry. I never thought I’d ever utter those words, but it’s true.
• Your time on this earth is the best blessing you have been given, for free. Use it to the best of your ability.
• Savor life’s simple pleasures. A warm summer breeze; calm, cooling rain; the ability to breathe and walk; happiness and laughter; the list goes on. These are the things that, when stitched together, make us human.
• Nothing feels as renewing as getting red blood cells when you’re severely anemic.

Inspired by my longtime friend Angeline. Things I need:

Day -16. It’s a little bittersweet jumping back my day count to a negative number. On one hand, we have a confirmed donor, a set day for transplant, and a plan to mobilize my continued journey to being healthy again. On the other hand, it’s a reminder that I have to go through this whole process all over again; that all of the physical progress I’ve made thus far gets reset with no guarantee that I’ll be “back to normal” when all is said and done. I’m hopeful that the graft will keep this time, but the Skeptical Biostatistician voice in the back of mind, the same one that helped rationalize scientifically why I’m even going through this in the first place, keeps reminding me of how slim the chances are of this working, based on published data regarding success rates for second allogeneic peripheral blood stem cell (PBSC) transplants in patients with severe aplastic anemia. Either way, I’m clutching, desperately holding onto the belief that positive thinking, happy thoughts, and lots of emotional processing via crying will help keep me alive. Oh, and science.

Everything is set for the second transplant. I’ve done all of the necessary pre-requisite tests to prove to my insurance company that I’m fit for transplant (pulmonary function test, chest x-ray, a ton of blood work, an echo, another bone marrow biopsy), as well as other things to prep for radiation (CT scan, getting tattoos on my chest and back to mark a homing center for radiation — my first tattoo!). Now we wait.

Here’s the game plan:

I get admitted on October 16th and we’ll do four days of chemo. On Day -1, we’ll do a total body irradiation (TBI) of 2 Grays. This amount is very, very little and runs little to no risk of affecting my body negatively.

To provide a comparison for how little the dose is: when they irradiate someone with breast cancer, they use 80 Grays targeting the tumor(s) in the mammary glands. For someone with prostate cancer, they use 60 Grays targeting the tumor(s) in the prostate. For someone with a blood cancer like leukemia or multiple myeloma, they use 11-13.5 Grays targeting the whole body. My dosage, 2 Grays, is used merely as an immunosuppressant, and with a dose that low there are little to no complications/side effects.

Then, we transplant the stem cells on Day 0, October 21st, (my second re-birthday so I guess my third birthday?) and then we wait and see.

I’ve been dealing with a lot of emotions and logistical things over the past few weeks. Lots of hard feelings like anger, frustration, anxiety, restlessness, sadness, and irritation. And some easy feelings like relief, happiness, ambivalence, and contentment. I suppose there’s nothing special about the insane emotional roller coaster I’ve been on, except everything feels super amplified since I’m low on blood. I can’t wait for my second transplant.