Day +8. Counts are still zeroed out. Getting platelets today because that count dipped too low. Got RBCs yesterday because I was super anemic. Began neupogen shots yesterday (and will continue daily) to “awaken” the “new” “immune” “system.” Don’t judge me for being snarky. My patience is running dry.

Aside from combatting the daily boredom, often by watching movies and TV, and useless internet surfing (who even says that anymore?), I’m glad that I’m feeling so much better than last week. There is a lingering nausea, however, that makes each meal a chore and taking every medication labor intensive — but I’ll survive.

I’ve reached the point where hospital food is very unappealing and I struggle to find things on the 8-page menu to stomach for each meal. Honestly, all I really want to eat right now (and until this ravenous craving is satiated) is Chinese take out. Or Korean food. Shoot, I could go for some Pho too, with some Pad Thai thrown in. I’m. craving. flavor. And by “flavor” I really mean umami, the fifth taste. Everything I eat is so bland, and simply adding salt doesn’t make it better. It just makes it salty. Different than umami. I’m asking for a friend.

But alas, I’ll have to wait until I’m no longer neutropenic before even beginning to think about outside foods entering this eager mouth. This could be a few days, a week, a few weeks before it actually happens. Until then, I’ll be cooped up in my hospital room throwing shade at clips of mukbang celebrities as my stomach growls. I digress.

Steve has been quite the nuisance lately. I think he has a chronic attention hogging disorder. He can’t go longer than 90 minutes without beeping and needing attention. The worst is at 3AM. We get it Steve. You’re special. Calm down.

I think this meme very accurately sums up his wailing.

BEEP BEEP BEEP.

Day +5. Most of my counts have zeroed out now: neutrophils, lymphocytes, leukocytes. My platelets have been depleted to a low level such that I’m getting a platelet transfusion today, but my hemoglobin has stayed above 7 since a blood transfusion on day -2 (which is when the serum sickness started).

Sorry for not writing much in the past few days. Getting over the serum sickness was probably, honestly, the worst thing I’ve ever had to do in my life. My days consisted of chronic aches and overbearing nausea, with spikes of fevers sprinkled in between. I cycled between pain meds, nausea meds, with no appetite — the most I could stomach was apple sauce and popsicles and even those got old. A dose of oxycodone, followed by dilaudid, followed by ativan, followed by tylenol, and then more drugs, other drugs, more pills, more bags hung on Steve connected to my octopus arm. Sleeping through the day and night in 60-90 minute intervals only to be awakened by some pain or beeping and then to be put back down with meds (narcotics).

I did a lot of aimless talking, daydreaming. For example, I apparently had a dream where a little old man was telling me how the world was going to end, and when asked what he said, I responded, “It’s just one of those.” Or, I had a dream where I was walking in my work neighborhood where there’s a lot of construction happening and in the distance I saw a construction worker on a building who’s butt, when bent over, looked like the Virgin Mary’s nose. So I did what any sensible person would do, I touched it.

Needless to say, I made it through with flying colors. I’m alive, I’m much much better, and I’m eating more. Now the biggest thing I’m facing (again), is the not-so-irrational fear of getting sick from something since my immune system is gone-zo. Chronic hand washing, water chugging, chap stick applying, doubly scrutinizing something if it’s clean enough for me to even touch (I’ve been religiously wiping my phone with alcohol wipes). Now we play the waiting game. Again.

Halloween was this past weekend. Halloween is one of my favorite holidays of the year, what with the costumes, parties, and yummy fall treats. I had major FOMO this year, but I was cooped up in bed resting all day. Ricky swung by and helped me put together little bags of candy for the patients on the floor. I went around and delivered them to people, in a “reverse” trick-or-treating kind of way.

I was nervous at first, because I had no idea what each patient was going through behind their closed doors, but everyone received the goodies well! It made me so happy to see how happy people were from such a small gesture. 🙂

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.

Day +183. Still getting blood transfusions weekly and hanging on. We’re about 6 months post transplant and I should be getting my first set of re-immunizations (Tdap, MMR, etc.), but instead I’m juggling appointments with the reproductive health center and the transplant clinic to get things set up for the second transplant.

A few exciting updates since I last posted!

I’ve banked my swimmers. I have successfully frozen a sperm sample! I spoke with my urologist yesterday and, after re-learning the wonderful details about in-vitro fertilization (IVF) and the latest technologies in that field, I was that told that though I have markedly reduced sperm counts (due to the killing of germ stem cells in my gonads from the chemo) they were able to freeze roughly 8,000 motile, seemingly healthy sperm! I say seemingly healthy because morphologically they look good, but genetically we don’t know what damage might have occurred. Regardless, this is amazing considering I could have ended up being completely sterile.

This also means if I want to ever pursue IVF in the future, we have the option to, provided that there are viable sperm that survive the thawing, which in reality is the biggest concern right now. In a healthy man’s sperm sample, about 50% survive the thaw. There are no stats on sperm survival of a person who underwent chemo. So my urologist has strongly suggested banking more samples to increase the likelihood of getting viable sperm cells in the future. Either way, I’m glad and relieved that I’ve been able to take care of any future genetically related children I may or may not want.

We have a potential donor. I got a call last week from my transplant coordinator saying that they’ve received a blood sample from one of my potential donors! This is basically like saying we’ve found a donor because at this stage, by providing a sample, the donor A) has been contacted, B) has agreed to be a donor, C) was willing to provide a sample to test. All UCSF has to do now is to confirm the HLA-type in house and then we’re ready to go. Though I don’t know specific details about this donor yet, I do know that everything about this person is “what we want.” I’m assuming that means this person is a male, is young (20s to early 30s), is healthy, and can provide a stem cell donation.

Since last week, I’ve been arranging a ton of appointments to gather information for my insurance to verify that I am healthy enough to undergo a transplant (again). Another ECHO, EKG, PFT, and tons of blood work to prove that yes, indeed, I can do this. Appointments with a social worker are lined up as well to talk about my caregiver and the plan that will be in place once I’m discharged from the hospital.

The plan currently is to have my mom come out from Texas to be my caregiver while I recover for 3 months. A tough thing to negotiate, but I believe things will work out better this time.

So the ball is finally rolling and we’re moving towards transplant #2! We’re hoping to coordinate with the donor (and donor center) for collection by the end of month meaning that we’re shooting for a hospital admit date by the end of September. I’ll keep you all posted as I find out more information, obviously. 🙂

I’m really excited, but also very nervous. Sure, I’ve done a transplant before so I know what to expect, but at the same time the preparatory regiment will be different with chemo plus total body irradiation (TBI). From what I’ve been told and what I’ve read online, TBI, while a painless procedure itself, leaves you feeling pretty crappy. So I can anticipate being more tired, more nauseous, having more diarrhea, and more brain fog. I’m hopeful that I’ll stay in good spirits during this second round, but I still can’t shake the nerves and anxiety around it all.

The TBI should basically blast my already crippled immune system, which should help the graft (from transplant) hold better. Some research has shown that this is the case, but then again every case, every patient is different. I’m hoping for the best outcome.

More to come soon.

Day +170. Weekly red blood transfusions are still on the docket with close monitoring of other blood cells. The transfusional iron overload has been successfully kept at bay with the drug Jadenu, though my serum ferritin levels are still pretty high. Overall, I’ve been pretty tired (and consequentially, pretty moody) but somewhat productive, despite not functioning at 100%.

Updates on the donor search: of the three donors we reached out to, one was unavailable (either ineligible to donate or backed out, which is totally understandable), one we haven’t heard back anything from, and one we’re waiting for confirmatory typing results. Because of the slow and poor response of these three donors, we’re reaching out to a few more possible donors to keep casting a wide net in search for the best donor. I’ll keep posting updates here as I learn about them.

The biggest thing on my mind lately has been figuring out cryopreservation for sperm before going back into the hospital for the second transplant. As a part of the pre-treatment for the transplant, I’ll undergo not only an extensive chemotherapy regiment (like last time), but I’ll also endure a single dose of total body irradiation (TBI). This treatment will basically render me infertile since the radiation is very potent and its goal is to deplete my marrow of any “Min cells” in preparation for the donor cells.

I grappled with sperm preservation a little bit before my last transplant, but planning and logistics for it fell to the wayside when things like preparing for a caregiver and wrapping things up at work took priority. The reality of me being infertile now is a possibility considering that the chemo I had last time could have done a lot of damage already (e.g. irreparable DNA damage, physical damage to multiplying sperm, etc). However, the possibility of there being viable sperm now that it’s been about 6 months post-treatment is an option; I’m hopeful.

I spoke with a patient navigator yesterday about details regarding sperm preservation, and was informed about all the specifics of the procedure. First and foremost, the UCSF clinic is located at Mission Bay about a block from where I work! Awesome. At your appointment, you fill out a few acknowledgement and consent forms, are given information about the processing and storage, and then are left to do the deed for about 30 minutes in their fully stocked specimen collection room equipped with any and every type of assistance you could want, including a large TV. You can even bring a friend if you want! Really brings a new meaning to happy hour.

Then once the specimen is collected, a urologist will analyze the sample within a few hours and will let you know details about it. They look at count, overall viability and robustness, any physical deformities, and general health of the sperm. They are unable to determine of there is any damage done to the genetic material of the sperm though; all assessments are done with a microscope. After determining how healthy the sperm are, you have the option of storing the sample. And that’s that. The sample will be stored for 5 years and storage can be renewed for more time after that.

Cost.

Since my situation falls under the umbrella of medically related cryopreservation, there is a pretty deep discount available for these services. Analysis of the first sample is $79, with storage for 5 years being $950. Analysis of a second sample is $229, with storage being $0 since they would store it with the first.

Overall, the cost of preserving two different samples for 5 years will run about $1260 out of pocket. I say out of pocket because most insurance companies, including mine, don’t provide benefits for cryopreservation, which is disappointing.

I’ve made an appointment for specimen collection next Wednesday before which I have to abstain from releasing any swimmers for 48 hours.

There are so many things running through my mind about this. First, I’ll be sterile after the TBI, with little to no chance of ever regaining fertility again. I won’t be able to have babies after the second transplant no matter how hard I try. (Not to say that anything I’d do would lead to having babies by mistake, but still). To have yet another thing that makes one human stripped from me is, quite frankly, infuriating. How many more things will this illness take from me? In addition to all the time lost this past year, all of the medical expenses, the emotional and psychological stress, the list keeps growing.

Second, is it even worth keeping and preserving my sperm at all? I know I want to have kids in the future, but do they have to be biologically mine? I’m a major proponent of same sex couples adopting children who need loving parents and safe homes to be raised in. When the time comes for me to be a parent, will I want to go through the hassle of finding a surrogate, trying our hand at IVF, and going through that whole process? This, in comparison to adopting a child, which is another fiasco. I suppose the answer here, which is why I’m even going forward with sperm preservation at all, is to have the option. Who knows what 30 year old Min will want. Who knows that 35 year old Min will think is best. Who knows that 40 year old Min will be able to handle.

I guess for now, providing my future self with options is the best thing I can do. Is it expensive? Sure, but money is such a trivial problem in the grand scheme of things. I just hope I survive through the next three years, post-second transplant to even make use of the options I’m so thoughtfully laying out for myself.