Day -2: Say Hello to Steve.

Day -2. I’ve successfully completed all three doses of rabbit ATG (with, thankfully, no further complications!), all four doses of fludarabine, and I’m currently running through my last dose of cyclophosphamide (plus mesna because all the peeing). I must say I’m very, very relieved that the past two days went much better than the first day. I was worried that I might have more adverse reactions towards the ATG and so mentally prepared myself to brace the worst that could come, but I tolerated everything really well! No headaches even! Through the combined experience and genius of all the doctors, NPs, nurses, and pharmacists on my care team, the choices to slow the ATG infusion and schedule/bum up the amount of medications worked great. Now onto the next hurdle, total body irradiation.


I haven’t been told when the radiation is supposed to be happening tomorrow, but I do know it shouldn’t take more than 30-45 minutes and should leave no marks and cause no side effects. After all, as I explained in a previous post I’ll only be getting 2 Grays of radiation spread throughout my body. This is purely to serve as another means of immunosuppression not immunoablation (I’m pretty sure I just made that word up). Fingers crossed for the best to come!


Last thing before I attempt to retire for the night as I’m still wrapping up the cyclophosphamide in the next hour and will get two units of RBCs since my hemoglobin dropped quickly over the past two days, I would like to formally introduce you to Adam‘s more experienced, beefed up, double deckered, older brother, Steve. He’s been using six units to continuously pump liters and liters of fluid into me like it’s nobody’s business (TWHS), and I’ve been urinating it all out, constantly. But that’s something I got used to with the last transplant. Anyway, welcome: Steve.

steve

His crazy mangled mess of tubes are no problem and we’re getting along quite nicely. Though he’s much noisier than Adam was, I’m so doped up on benadryl, demerol, oxycodone, or a mix of them, I’m too tired to even notice. (And yes, each of these drugs are used to treat a specific side effect I’m dealing with. No, I’m not an addict. Jerks. 😉 )

Day -3: Shake it like a Polaroid picture.

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 -6: Me and my octopus arm.

Day -6. I get admitted to the hospital tomorrow to begin the second stint of this ironman triathlon I call my treatment. I’m super excited to get this ball rolling so I can start moving towards being fully healthy again. Me and my octopus arm (my Hickman line, which I’ve had for 8 months now and is still annoying) are ready!

After a pre-admit appointment in the morning, I’ll go through the tedious process of being admitted and getting situated back on 11 Long at UCSF. Then in the evening I begin day one of a four day bout of chemo, followed by a single dose of total body irradiation on day -1, and then peripheral blood stem cell transplantation on day 0.

Excited actually doesn’t quite capture how I’m feeling. I’m a mix of ecstatic, prepared, and hopeful with a good twist of anxious and nervous. It’s a similar feeling to the day before the first day of school, when you’re rearing to go but also hesitant. But I’m ready, I’m here, let’s do this.


Over the past few days I’ve been getting things in my apartment in order and making sure that things are set up for when my mom gets here upon my discharge from the hospital. I’ve also packed up a good chunk of my life to take with me to the hospital. After all, I will be there for a month, so a brother’s gotta figure out things to do!

Aside from the regular stuff like toiletries, electronics, and comfy socks, I’ve made sure to pack up craft supplies, puzzles, and Halloween goodies! No keyboard this time because it was pretty bulky and I ended up not playing it as much as I would have liked.

Since Halloween will happen while I’m admitted, I’m bringing candy and supplies to make goody bags for the other patients on the floor. (I hope no one’s allergic to chocolate or peanut butter…). I’ll be hand crafting each bag and filling them with candy to distribute on Halloween; sort of like reverse Trick or Treating because the candy’s coming to you. I’m excited.

I’m also going to be a vampire for Halloween this year. I figure it’s the perfect costume because: A) I’ve never been a vampire, and B) If I could, I’d suck people’s blood all the time (since, you know, I’m pretty anemic). Just because I’ll be stuck in the hospital doesn’t mean I can’t have fun! 😀


I’ve been up to a few baking projects as well before going in. Croissants, fruit tarts, cookies, and cakes. I thought I’d share a few of them. #mincreations

croissants

Butter and jamon & gruyere croissants.
A true labor of love. It took 3 days to make these flaky, delicious puppies. I turned the spare croissants into croissant bread pudding the next day (no photos were taken; it didn’t last long).

tart

Mixed berry and fig tart.
The last of the summer berries in a tart with pastry cream and a pate sablee crust.

pbcake

Six layered chocolate peanut butter cake.
This puppy was made for a dear friend of mine’s birthday. Six alternating layers of chocolate cake, peanut butter, and peanut butter cream cheese frosting; iced with said frosting, topped with a dark chocolate ganache and Reese’s mini cup bits. I used an entire jar of peanut butter for it. It was a big as my head and so delicious!


With my last day of “freedom,” I’m doing laundry, visiting some of my favorite places in SF one last time, and finalizing all my packing. Round 2, here we go!

Day -16: And the waves keep rolling in.

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:

2378315

Day -16: Resetting the Countdown.

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: Gearing up for round 2.

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: Save the lil’ swimmers!

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.

Day 161: I’m still alive. I promise.

Day +161 (or something like that). Sitting in the clinic this morning, gearing up to get another two units of RBCs. No need for Neupogen or platelets though. This is surprising, but great news! My body has been doing this interesting thing lately where my lymphocyte and neutrophil counts have been stable and steadily increasing over the past few weeks, meaning that my fragmented immune system is starting to do what it’s supposed to do! Granted, I still need blood every week or two, but this is incredibly encouraging.

This trend is what my doctors were hoping to see about a month ago when we were deciding on whether or not to do a second transplant. Unfortunately, this encouraging news comes too late as the transplant train is well on its way moving full speed ahead. Regardless, I believe the second transplant is the best course of action considering I still need RBCs weekly.

We’re currently waiting to hear back from three potential international stem cell donors (from China and Japan). My doctors would like to do a stem cell transplant the second time around as it is believed that they are more successful as a second attempt versus a full marrow transplant. The lag time in communication between countries makes for slower progress on the transplant front, but patience is a virtue, right?


I started a fundraising campaign to aid with funds for the second donor search since my insurance doesn’t cover 100% of the search cost. With an initial goal of $3000, friends and supporters reached that goal within 90 minutes of my campaign being live! I asked my care team if I could raise additional funds to help cover costs of finding more donors as well as medical costs, and my second goal of $6000 was met and surpassed within a day.

I am completely humbled and so grateful for the generosity of my friends and supporters who have made the search for my second donor possible and who have helped cover medical expenses. I really am the luckiest guy in the world and am so blessed by everyone’s willingness to help. 🙂

giveforward


Apologies for the lack of posting lately. Going back to work has proved to be more demanding that I thought, and I’ve also been traveling a bit to see friends before the second transplant. Over the past six weeks I’ve made trips to Boston and LA seeing friends from college that I haven’t seen in a while.

The trip to Boston was fantastic! A few friends (Steph, Brennan, and Monique) banded together to get me a plane ticket to visit for about a week. I visited all my favorite places (the Boston Commons, Public Gardens, Newbury Street, BU, and Cambridge to name a few) and ate at all of my favorite restaurants (Flour Bakery, Craigie on Main, the Harpoon and Sam Adams breweries, and Green St.)!

samadams

copley

bpl

The highlight of the trip was when my friends surprised me with a surprise party on the weekend! Friends from the Boston area came together, as well as friends from Philly and Connecticut drove in to see me. I was completely in the dark about it and was totally taken by surprise. I’m really one lucky guy to be blessed with such amazing people in my life. 🙂

frands


I just got back from LA with Ricky this past weekend and also had a blast seeing friends and enjoying such a great city! Everything from visiting Disneyland and Hollywood, to eating spaghetti and meatball sandwiches and macaron ice cream sandwiches, I saw and ate everything. 🙂 I stayed with my good friend David and Ricky’s friend Natasha.

mickey

Ricky, Mickey, and Me. ❤

spacemountain

Hanging on Space Mountain.

waffles

Roscoe’s Chicken & Waffles FTW!

santamonica

Oh hay Santa Monica! You sure look pretty.

hollywood

We found it!

comedy

Great standup comedy with some great people at the Comedy Store.


We also had an Abbeys west coast reunion at our founder Cooper’s house. It was great catching up with four generations of Abbeys. We were all in different life stages, which was amazing to see. (The Dear Abbeys is the acappella group I sang with in college.)

abbeys4


About two weeks ago, my friend Laura Nelson put me in contact with Brendon Rearick, a fellow aplastic anemia patient, who was diagnosed this past July. Like myself, Brendon is a healthy, active, mid-20something, who is one of the roughly 300 people who are diagnosed with aplastic anemia every year. It was absolute serendipity that linked us together, and I’m grateful that we are able to share our experiences and love of ice cream with each other and our friends and family. Click here to find out more about Brendon’s journey and please consider supporting him. He’s a great guy with a firm head on his shoulders and a bright future ahead of him!

brendon


That’s all for now. We’re hoping to hear back from my possible donors any day now. Until then, I’m hanging tight and enjoying as much of this life as I possibly can. 🙂

Day 132: Heigh-ho, heigh-ho, it’s off to work we go!

Day +132. Sitting in the clinic getting another two units of RBCs. Weekly transfusions have been the name of the game as of late, as are weekly Neupogen shots. The course of treatment so far has remained the same. At my weekly appointments, I play a mean waiting game to get shots and blood. But by now I’m an expert player, knowing to bring my laptop to keep me occupied. We’re currently in the process of identifying and confirming a second donor, another 10/10 HLA-type match. In the event that we’re unable to confirm them, we have a few 9/10 matches who are ready to go. This wouldn’t be the worst case scenario, but it definitely isn’t the most ideal. For now, more waiting.


Apologies for the spare postings. I’ve found that the days blend together and smush into weeks that overlap and compound into months that pass all too quickly. I would be lying if I said I was functioning at 70%. I’d be lying if I said I was even at 50%. I can confidently say I’m running at a solid 35%. But, I suppose that’s to be expected considering I have about less than half the amount of hemoglobin in my body than normal. And so it goes.


The latest piece of news is, as of last week, I’ve started back at work full time!

It’s been super exciting to jump right back into the project I was working on before leaving for the transplant back in February. We’re in the throws of wrapping up a paper and I’m stoked to finally get our work out there.

It has been a bit of a struggle to wake up and be fully ready to go in the mornings, but thankfully caffeine is an amazing stimulant and helps so much with getting my brain up to speed. I have been needing more down time after work though, and I’ve needed to go to sleep earlier. But overall, I’ve really enjoyed getting back to work and reestablishing some sense of normalcy again.


This week, I’m headed out to the Bean (Boston, if you’re unfamiliar with the lingo) to visit some friends and to show Ricky around my old stomping grounds. I’m super excited to be back in the city where I found myself and to see friends I’ve missed dearly. More updates to come from the trip!

Day 114: #lovewins

Day +114. A lot has happened in the past two weeks! For starters, the SCOTUS finally legalized same-sex marriage for the entire country. But of course, it wasn’t made official until Beyonce said so.

There were tons of celebrations here in SF and around the country as the 5 to 4 vote came just in time for Pride weekend. I, of course, couldn’t miss out on the festivities and celebrated with a few friends. History was made on June 26th, 2015.


I’ve had the fortunate opportunity to get out and take advantage of the city I love, making a point to walk to do something each day. Recently, I’ve visited the Conservatory of Flowers and the Asian Art Museum — both landmarks of SF that were on my list of things to do.

I also saw the much anticipated Inside Out. If there’s any movie I’d recommend going to see this summer, it’s this movie! Forget about Jurassic World (which, IMHO was a misogynist letdown), Inside Out is legit a great movie. It’s a really cute take on emotions and memory and a simplistic breakdown of a few core psychological theories. Check out the trailer:


So, I’ve been trying to keep myself busy and staying active filling my time with activities. I’m expecting to go back to work in the next two weeks, provided things remain stable for me.

Stable. What does that look like these days? Well to be honest, it’s a picture of constant fatigue and minor body aches (from all the walking I’ve been doing — a good kind of sore). Some days my brain is foggier than Karl and other days I’m as sharp as cheddar! I’ve learned how to solve the Rubik’s cube! I’m still going in weekly for appointments where my counts are continuing to drop and we still treat with Neupogen and blood transfusions.

I’ve run into an frustrating conundrum. Transfusional iron overload has now been tacked on to the list of growing issues with my body. What is transfusional iron overload you ask? Well, let me explain.

Every unit of blood has roughly 250-300mg of iron. When a patient with a rare anemic condition, like myself, gets many units of blood transfused in their body, they get all the excess iron that comes with it. Normally, your body clears out ~1mg of iron everyday through your bowel movements. This slow clearance compounded with pumping in iron from blood transfusions causes transfusional iron overload, which is what I’m dealing with now. There is no efficient way to clear iron from your body so we’re in an interesting position. There are a few drugs on the market that have been used for iron clearance, but there are a lot of issues and side effects associated with them (e.g. ExJade which is #2 on the list of drugs that can cause death). We’re proceeding with caution moving forward being extra conservative with how often I get blood, but the reality is my body isn’t making any RBCs so my need for transfusions is high.

In other news, the official “go” has been given to secure a new bone marrow donor. If nothing changes by August, i.e. my counts don’t stabilize, then we’re going to go forward with the second transplant.

We really only have two options here:
1) continue the current course of treatment, getting transfusions and Neupogen as needed while still be tired and existing subpar
2) try the second transplant and hope for a full recovery

I’ll try my chances with door #2.


And with that, I leave you with Justice Kennedy’s closing comments on the Obergefell v. Hodges case.