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.

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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. 🙂

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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.)!

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copley

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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. 🙂

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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.

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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.)

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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. 🙂