Harrowing Marrow @harrowingmarrow - Tumblr Blog

Day +1828 - Five Years (+2d)

Last Thursday marked 5 years since I received a bone marrow transplant containing Scott’s stem cells. It has been 1415 days since I last wrote, and in that time, I have been quite busy living. What seemed like an impossibility five years ago has come to pass: I’m hematologically boring again, although this is the only thing about my life in the past few years that could charitably be classified as ‘boring’. In stark contrast to the ‘Medichest: Large’ days of Seattle, I have been off all medication since the fall of 2013. I have generally spent my time trying to be the best husband, dad and scientist that I can. I still mountain bike frequently, and I’m no longer wary of infection, sunlight, GVHD, or most importantly, relapse. Last week, I decided to get marrowed for the first time in three years. The results show that I am not going to die of t(3;3)(q21;q26.2) MDS.

My hematopoietic stem cell transplant was curative.

In the past 1415 days, we have spent time with Scott, Kari and their kids twice. The first was in October 2013, when Zane, Dianna and I flew to Michigan. We spent the weekend talking with Scott, Kari, and their extended families, and I got to sample an authentic coney dog (Flint style).

Zane became fast friends with their kids, and quickly assembled assault weapons out of legos to play with them. It was a whirlwind of a weekend, and it made it clear that in addition to Scott being a 10/10 HLA match, our families are also very compatible.

Building upon Michigan, Scott, Kari and the kids came to California to visit in July 2014. We showed them around the bay area and they got to meet my Mom and my friends.

Scott and I rode Fassler. He humored me, and I think he had a good time.

We rented a Sprinter and drove to Disneyland, which was about as chaotic and wonderful as you could imagine.

As you are aware, these are good people. Despite not being a ninja or Lou Ferrigno, and not having any SEAL training, Scott was exactly the right person for this job. Looking back, I cast Tom Marrow as a superhero because I couldn’t have reasonably expected my recovery to go as well as it did. I engrafted quickly. I didn’t relapse. My BK virus infection resolved quickly, before I had a fully functional immune system. I didn’t get chronic GVHD. Tom must have been a superhero - how else could I have explained the consistent stream of good news?

Scott isn’t a superhero. He’s a great father and husband, and he has a steady moral compass. He works hard for his family and he’s there for them. He is just like the rest of us, and that is the most profound part. If we all decided to help a stranger when called upon, the world would be a much better place. It doesn’t take a superhero to do extraordinary things, we all have the power to help other people. Scott embodies what’s possible when we give in ways that can’t be reciprocated. I aspire to be like him.

#HSCT #5years

Day +413 - Scott

I talked to Tom Marrow Scott on the phone recently. As it turns out, he does not have advanced military training, he is not a ninja, and he is not distantly related to Chewbacca.

But he’s a total badass. And his CD8+ T-cells are definitely of the Mr. T variety.

Scott lives in Michigan. He’s 33 and has a degree in mechanical engineering. He works in the automotive industry north of Detroit. Scott married his lovely wife Kari 9 years ago and they now have three insanely cute kids. When Scott is not out donating his supermarrow to save people he has never met, he plays golf and runs. A lot.

Scott joined the marrow registry in 2009 when a coworker’s son was in need of a transplant. A drive was held at Scott’s office and he was swabbed. Scott told Kari about the experience and she registered herself by mail. It goes without saying - these are good people.

When Scott found out that he was a match, he said that Kari was excited and a bit bummed that she wasn’t called instead. Scott went in for his peripheral blood stem cell harvesting, which normally takes 4 hours, and was done in an hour and a half. Like I said, he’s got supermarrow. He donated some extra just in case.

In July 2012, I wrote a letter to Scott. I turned it over to the liaison at the SCCA who was in charge of my matched unrelated donor search. The letter had to be free of overt identifying information to protect my privacy, but it was important to me that he knew what kind of person I was. Because I didn’t have any idea how the inpatient phase of my transplant was going to unfold, I wrote the letter before I was admitted to the hospital. Scott didn’t hear anything for a few months after the donation, and got the letter in December of 2012. After that, he didn’t get contacted again until I signed the consent forms to release my information to him in July 2013.

The phone conversation with Scott was a good one. After I had thanked him for roughly the 37th time, he stopped me and said, “I really appreciate your gratitude, but you should know that this was a lot more difficult for you than it was for me”.

I guess that’s the beautiful part of this ordeal. As straightforward as it was for him to donate, the statistics show that I’d be in a very bad place by now if he hadn’t.

Dianna and I look forward to meeting Scott and his family in person, and we are figuring out how to make this happen. This part of the process is surreal. We will keep you all posted.

If any of you would like to write to Scott or ask him about the experience, please send it to me and I’ll pass it on to him.

The world needs more Scotts.

Day +396: Tom Marrow has a name

It's Scott. He lives in Michigan. More to come.

Day +363: Seattle is still awesome

This week I had my one-year post-transplant checkup at the Seattle Cancer Care Alliance. My blood counts since my last marrow biopsy in January have been steadily improving and life has felt strangely routine – I go to work, shuttle Zane and Mr. T to or from school and daycare, make dinner, squeeze a few bike rides in here and there, and try to find a few minutes in the day to do something that isn’t routine. The average life of a 40-year old with a wife, two young kids and a job. I’m impressed by how quickly routines can hide the passage of time and soften anxiety. I guess that's what they are supposed to do. I can’t be sick, I’ve got shit to do.

Maybe as a consequence of my routines I haven’t been too nervous about the one-year follow-up appointments. I'm sure that's the purpose for which my unconscious designed them. It didn’t really hit me what I was doing this week until I rode up to the SCCA at 6:45am, locked my bike* in the parking garage, and stepped out of the elevator.

The first thing I noticed was the smell. The SCCA has a particular smell that’s hard to describe, like ethanol mixed with soap that doesn’t have fragrance, probably derived from the 32,000 hand gel dispensers strewn about the place. I checked in and waited. When you wait at a cancer clinic, you look around. People were in various stages of treatment and health. Some people looked absolutely terrible – bald with wisps of thin hair, yellowed pallor, slow and deliberate movements. Others looked okay, but most of these were sitting next to someone who looked terrible and were talking to them, caretakers. I was the only guy in there sitting alone that didn’t look terrible. It struck me that people were likely glancing at me thinking, “why the fuck is that guy sitting here? He looks fine. I don't feel well. I hope I get healthy again”. Because that’s what I said to myself last year when I would sit in this waiting room twice a week. I look like that guy who is healthy now. It made me feel a little guilty.

I got my blood drawn and went up to the sixth floor. The view is still nice. The crazy-haired receptionist said, “Hi Mr. Zeiner”. I guess it hasn’t been that long. It began to dawn on me that everything in the place was a trigger for PTSD – the door handles, the elevator sounds, the pink Athena water bottles, the chairs, the view of Lake Uterus. It made me mildly anxious and distracted.

I started my consultations and tests. DEXA, chest X-ray, dermatology, eyes, pulmonary function and a bone marrow aspiration. That’s a lot packed into two days. Getting marrowed still hurts. The process is pretty brutal - it took a lot of wrenching and pushing and leverage to get the needle deep into my hip bone. Without variation, the nurses who perform marrow biopsies are petite and sweet, 90-100lb. I have no doubt that they could rip a pissed gorilla's arms off. Don't ever fuck with a marrow nurse.

I had yesterday off from appointments and spent it with Dianna and the kids driving around Seattle. It gave me some time to think and to let worry to creep in. Maybe I’m not okay. Maybe I’ll be told I have to go on chemo tomorrow. I told myself I had no reason to suspect that I was relapsing. Everything about my recovery has been exemplary – the doctor on Monday said, “you rode here? You’re the healthiest patient I’ve seen in the past month”. I don’t always feel great though. In May I was taking naps in my car at lunch because I was exhausted. I have been struggling to get off cyclosporine. I’m not pre-transplant Gus.

Today was my consultation, and it was all good news. It turns out that my marrow is clean! I’m 100% Tom (which means I’m not a chimera of GusTom – the busulfan and Tom’s marrow cleaned me out well), and there are no detectable abnormalities in my marrow by flow, FISH or karyotype. I am relieved that these are the data, but I also feel somewhat numb. It definitely hasn’t sunk in yet. I think I’m just tired.

I filled out the consent forms that will provide Tom with the option of meeting me, should he want to. He’s got some seriously awesome marrow. I'll let you know how that goes.

*we have one car this time around and we’re staying with Mike and Deb in Bellevue, so I did a bike/bus combo to get myself to my appointments on time, which started at 7-holy-crap-o’clock. I figured that my schedule wouldn’t be well tolerated by the kids and torturing Dianna with a couple of cranky, sleep deprived kids like that wasn’t necessary. Besides, my cancer bike is fun to ride.

Day +195: a few things of consequence

A lot has happened in the past month. I'll provide you with some of the highlights.

First off - holy crap, we own a house! We closed on 1/9/2013 and moved in the next day. We are in the process of unpacking in fits and starts, but we're functional. In the past two weeks I've gone for a bike ride up Mt. Montara out of my garage, Dianna has hiked the trails of San Pedro Valley county park by walking out our front door, and Zane and I rode our bikes to the beach from the house. Pacifica is all kinds of awesome.

Second - I'm back at work! I started back at Agilent Labs part time on Tuesday. The place feels quite comfortable and without exception, the management and my coworkers have been stars of the rock and roll music. It feels good to be able to use my brain again. I have a high stack o' papers to read, as apparently scientific progress didn't take a break with me. Still, my amazing colleagues did some heavy lifting on our project in my absence, and things right now are very exciting. I really love my job.

Third - had cancer! Results from my six-month bone marrow biopsy and aspiration last week are starting to filter in. Manual smear and flow cytometry are back, and both indicate that I'm recovering from the transplant very well and that no tardmarrow can be found! The emotional relief here is huge, as the unfortunate people who relapse in the first six months following hematopoietic stem cell transplant tend to not be helped much by a second transplant, thus the SCCA does not favor doing them a second time. So, this treatment option, as grave as it is, is still a tool in the arsenal should I need it in the future.

Life is good.

Day +187 - CaroMarrow! My friend Carolyn registered at Be The Match when I was diagnosed and she was called a few months back as a potential match. It turns out she matched well enough to be the donor and she donated peripheral blood stem cells yesterday, which as I write this are likely in transit to their recipient. Carolyn got 5 injections last week to mobilize her stem cells into her bloodstream, and was hooked up for four hours to a machine that harvested the stem cells yesterday. I hung out with her through her donation and we chatted. She's 4'10", and the phlebotomist estimated that the recipient was 220lb or so - despite this size difference, Carolyn had a lot of HSCs in her blood and one day of donation was sufficient. She's amazing. She's going to be someone's Tom Marrrow. She's CaroMarrow! I'm lucky there are people like Carolyn and Tom in the world.

Day +140 – Home

It’s been a while since my last update. I’m aware that some of you who don’t have regular contact with me have been concerned that something is wrong. I'm sorry if you were worried. I’m doing quite well. I've just taken a month or so off from writing.

I've been back in San Mateo since October 19, and I have been spending most of my time trying to get used to my ‘normal’ life again. Zane is at school in the mornings and we have Erika the nannygoddess taking care of Trey and virtually everything else (seriously), so I feel as if I should be relaxed and recovering with ease, able to go for bike rides and hikes or go read at my leisure. On paper it’s a piece of cake, the ideal circumstances for recovering from a BMT. In reality it’s hard for me to manage. It’s been an adjustment to come back home and to try to slip into my old life. It’s become clear that in many ways my old life no longer exists. I’m not as energetic as I used to be. My friends and family look at me through a different set of lenses now. My fears are different. It’s hard to get distracted by the things I used to be distracted by. I hope this will change with time, but I have to assume that it won’t. I have to be content with how things are right now.

I’m exhausted most of the time, more so than I was near the end of my stint in Seattle. My hemoglobin counts have been bouncing around (I was told they would) and it’s hard to prevent worry that there are bad things brewing from creeping in, but I have no reason to believe that anything’s wrong. On the contrary, there’s more negative data that points to my MDS being a very slow burner rather than the aggressive aspiring AML monster that we had feared – I sent my pre-treatment bone marrow aspirate to a colleague who put my marrow into NSG mice. NSG mice are immunodeficient and when provided with the human hematopoietic stem cells present in bone marrow aspirate, become mice with human hematopoietic systems. These mice serve as a laboratory model for studying engraftment and working with blood cancers (among other things). Engraftment of bona fide AML lines in NSG mice sounds science-fictiony but is actually pretty routine. This approach is successful the most of the time. When provided with my MDS tardmarrow, none of the NSG mice engrafted. Additionally, my MDS tardmarrow was unable to expand in cell culture (although 2/3 of AML lines crash in culture too, so this is less informative). Coupled with my previous marrow aspirate data that showed my MDS hadn't progressed from 3/31 to 5/18, I’m hoping that my MDS is slow. And that Tom is mercilessly trashing it.

My new oncologist at Stanford is a bright guy, but the style here is quite a bit more relaxed than it was in Seattle. The SCCA is a well-oiled machine. Everything at Stanford is a bit hands-off relative to the SCCA, but the BMT staff know their shit and I think I should do fine here. I have an appointment this afternoon.

In non-cancer related news, we’re in escrow for a house in Pacifica! We have been house-hunting in the Bay Area for some time now (two years), and we have finally pulled the trigger. I have found that it helps to think of our downpayment as monopoly money to avoid having an aneurysm. Our good friends Shawn and Cindy had bought a great place in Pacifica in July and shortly after closing learned that they had a golden opportunity to relocate out of state. It’s a great move for them for a number of great reasons (two, actually). While Los Zeiners are all excited to be rooted in the Bay Area (and I’m looking forward to being able to ride high caliber trails like Crack, Mile and Boyscout by opening the garage door and riding down the street), we are mourning the migration of our friends.

Happy holidays to everyone.

#home

Day +90: a good day at the SCCA

I'm a super-boring cancer patient these days.

My program exit test results are back. All of the results are great news. My bone scan from last week indicates that my bone density wasn't compromised by my 50-day course of prednisone (which was a big worry - one of the few complications of pred that's irreversible). So, except for the muscle loss and fluid retention (which is waning), I'll hopefully be free of all prednisone side effects soon. Thus far, my GVHD has been minimal and controllable without pred, so hopefully that trend continues.

I have been tapering my nightly IV infusions of magnesium (which are getting old - it takes 1.5h a day to do this and I seem to always forget to start until I'm super tired), and I've been tolerating oral magnesium pretty well for the past week. Because I appear to be able to tolerate magnesium orally, the last obstruction to removing my Hickman line is in the process of being removed. I have an appointment scheduled to have my Hickman line pulled on Monday (I should state that the Hickman is a fabulous, life-saving invention, but I'm ready to not have tubes hanging out of my heart). I'm ready to take a normal shower without this Aqua-guard bullshit.

Finally, the results of all four tests on my marrow biopsy and aspiration are now back. I'm happy to report that there are no detectable traces of my old dysplastic marrow! Hematologically, I appear to be all Tom. Awesome.

So, I'm heading into my discharge conference next Wednesday in infinitely better shape than I was when I arrived in Seattle five months ago. For my 40th birthday on 10/21 (which is coincidentally day +100 post BMT), I'll get what I'd hoped for.

I'll be home with all of my family and in remission. The most perfect present.

Day +82: some results

I've entered the final 'work-up' phase of my 100-day program at the SCCA. I had my pulmonary tests done on Monday and the results showed that my lungs work better now than they did before I had my myeloablation. I can't explain why. Maybe I'm better at taking the tests now.

I had a bone marrow biopsy and aspiration yesterday. Apparently having more marrow in my bones makes for a more painful biopsy, as the same awesome marrow nurse that did my biopsy for the preamble did this one, and this one was considerably more painful. This also means that I have more marrow now than I did before I was ablated. Which is cool. When the marrow nurse was finished she sang, "Hip Hip Hooray". I thought that was pretty funny.

Now that you've all been steeped in the nuances of marrow assays and result reporting, you are aware that the results for the four key tests (flow cytometry, manual smear, FISH and karyotyping) don't all come back at the same time.

But the first results are back.

The flow cytometry data show that I continue to be negative for the presence of dysplastic tardmarrow! Don't break out the champagne yet - there's a lot that flow can miss (which is why they do the other three tests), but this is an excellent first step.

Tom has been busy kicking ass. I'll keep you all posted as these results filter in.

Rattlesnake Ledges

Day +75: family visit, good marrow juju, rattlesnakes and updates

It's been a few weeks since my last post, which I know was grim, but cancer is grim. I wasn't happy with the post about Janet so I broke my own rule and edited it extensively to give you a more accurate snapshot of the kinds of things go on in my head. These things are not always comfortable to read. I think about my own death a lot and at the same time, have a great deal of hope that I'll escape it for many years. There’s plenty of reason to hope. My counts are good. I’m physically doing well. It's the tension between these two anchors that defines me these days and my mood swings daily, hourly sometimes. Whether or not you think about it as much as I do (which I know is depressing), these anchors define you too.

Today I have a few vignettes from my life over the past two weeks.

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Los Zeiners visit Seattle

Dianna and the monkeys came to visit last weekend. It had been four weeks since I had last seen them and I miss my family like crazy. FaceTime is amazing technology, but nothing substitutes for being able to touch and feel and smell and hug and nap and sleep with your wife and kids.

Zane got introduced to Old Maid, and Dianna played it with him about 30 times in two days. He screamed every time he got the Old Maid. Which got Trey's attention. Which prompted Trey to run over and stomp on all of Zane's card pairs while looking at Zane and grinning (he’s a punk like that these days). Which made Zane scream again. An infinite loop of comedy.

Both Dianna and I feel like the visit wasn't much of an emotional recharge - we're both still fried, still miss each other, still treading water until I get discharged. Dianna is valiantly performing her role as a temporary single working mom with two very young, ludicrously active kids. Although she's a superhero the situation at home is stomping her. She has enough spare time and bandwidth to flop down on the couch after stuffing the kids into bed post-evening routine, call me, and mumble a bit. Shortly thereafter, both of us pass out. The sun comes up the next morning, after which (if she's lucky) the sons get up and run opposite directions and she starts the whole steeplechase over again. I imagine it's like wearing clothing made raw of bacon and running a marathon, while a pack of wolves (everyone knows wolves really like bacon) are released a few minutes behind you - stopping is not an option.

Some unforeseen consequences of splitting the family for two months – Trey is definitely going through a ‘Mom’ phase right now (as 1.5 year olds are wont to do), but I can’t help think that a key contributor to this is that Trey doesn't see me routinely and doesn't have much of a memory of me on a day to day basis. If I’m not there I’m not part of his life. I know this will change when I’m back next month, but it doesn't feel great when my attempts at parenting or calming him down were summarily rejected in favor of a hug from Dianna. That happened a lot last weekend.

Four more weeks and I'll be back with them. Now, back into the pool!

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Good Marrow Juju

A lot of friends, family and colleagues got registered with Be The Match on my behalf when I was diagnosed. I wrote a post about this a while ago. Since then, Amgen has turned the volume up to eleven and has now held marrow registry drives at their sites in both South San Francisco and Boston. They have put a few hundred new people in the registry. A lot of these people are from ethnic groups that are underrepresented in the registry. This makes me happy.

It’s also been impressive to see how the power of social media has spread this call for donor registry far and wide to friends and friends-of-friends. A large number of people got swabbed and entered in the marrow registry through contacts on Facebook. The consequences of this are starting to appear:

A few weeks ago my friend Carolyn got a letter from Be The Match. She was identified as being a potential match with a 44-year old male who has chronic lymphoid leukemia and needs to find a matched, unrelated donor to save his life. She answered the letter and will be HLA typed more extensively to see if she's a match.

A few days later, my friend Matt also got a letter from Be The Match. He was also identified as being a potential match for someone who needs a matched, unrelated donor. I doubt it’s the same recipient.

This is almost more than I can bear without tearing up.

I’ll write extensively about how my emotional ties to Tom Marrow have evolved over this process in the not too distant future. I can say that I place it among the most profound and significant acts of kindness that I've ever been on either end of. Tom is a total stranger and should I survive this ordeal, he will be largely responsible for saving my life. I’m basically a very fancy container – the scaffold upon which Tom is building a new organ system. And in this regard, he has proven to be an absolute fucking badass. I’m convinced that his marrow has advanced military training.

Carolyn and Matt might get to be someone's Tom. That's just awesome.

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Rattlesnakes

I did my first out-of-Seattle hike since before the BMT yesterday. The prednisone really clobbered my legs - apparently one of the more wonderful side effects of prednisone is that your core and leg muscles waste away. Fast. Conservatively I estimate I lost 7-10 lb of thigh muscle alone. My thighs and calves look like stilts now, so I need to build this muscle back up. Hiking is a good way to do that, so I flipped through my book, and found Rattlesnake Ledges outside of Issiquah as a listed hike. 4mi round trip, 1100 feet of elevation gain, not bad. A good moderate hike.

From the parking lot. I am headed to the rocks on top.

The camera can't capture how many shades of green there are in Washington. It hasn't rained in months and it's still astonishing how verdant everything is.

Woodpeckers.

Leaf lunch.

On top. You can see where I parked.

Aggressive pandhandler. This chimpunk was all about divesting me of my PB&J.

The sun came out for the walk down. Definitely the best hike I've had in a few months. I dig the Issiquah alps.

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What’s going on with Gus?

Things with my general health continue to be good. My blood counts continue to be fine and I’m finally off the fucking prednisone (one week as of today) and so far, my gut GVHD hasn’t come back yet. Hopefully I will be able to stay off of it. Now I have to deal with the consequences of being on high-dose prednisone for 50 days – namely the muscle wasting and moon-face (see video), but these will go away. I’m also sleeping a lot better. Sleep is good.

My final post-BMT bone marrow biopsy and aspiration are next Tuesday, which initiates the gauntlet of tests that I’ll endure so that I can exit the 100 day program. The SCCA does a thorough job of providing a snapshot of exactly where I am in recovery at the end of their program, and as such my dance card will be filled for the remaining few weeks I’m here with clinic visits and tests. I’m sure my insurance company loves this part, as the tests are expensive. If all things are kosher – namely, no evidence of my old tardmarrow and no GVHD, somewhere around 10/21 I’ll get discharged.

I have hope.

Day +61: matched, unrelated bone marrow donors save lives

My recovery in the past week has been moving more or less at the same trajectory since I engrafted – I’m doing extremely well. My hematocrit is 36, which is now higher than it was in November 2011. My white cells and neutrophils are bouncing around mostly due to the evil-in-a-pill that is prednisone, but I’m smack in the middle of the normal range. I’m one week away from the end of my prednisone taper (down to 5mg/day today, rather than the 80mg/day I started at) and I still don’t have any signs of overt gut GVHD. I’ve been hiking with friends on trails, climbing stairs, riding an exercise bike, and generally doing lots of reading, writing and eating. Lots of eating – I can destrominate a Zack* with zero hesitation or issues and still eat snacks and two more meals.

Here is a picture of two soon-to-be-consumed Zacks (including The Dianna for accurate Zack scaling):

*two biscuits, spicy gravy, a fried egg, a few pieces of bacon… and a fried chicken breast, ‘cause there weren’t enough calories in the rest of it. It is easily 10x more awesome than the sum of its parts.

The new lime team rotating fellow found the above hilarious and wants to put a check-box on the SCCA patient forms as a way to evaluate the need for continued nutritional surveillance -> ‘Can/can’t eat a Zack? ____’ And I haven’t gained a pound (but my weight is stable). It takes a lot of calories and protein to build an organ.

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Here, I'm struggling for a transition. I wrote the above last night. I know it's kind of lighthearted and funny. I had a very different version of the rest of this blog post written, but got some news today that has changed the order in which I’ll post. I got the cold dose of reality this morning while scrolling through Facebook over coffee. I'll try to explain to you what I've been thinking today.

I'm generally terrified and I try to control my fear with logic and distraction. This formula works for the most part, but the underlying reality that anything could happen to me, that I could take a turn for the worse and die quickly is always in my mind. I've just been through two hospital stints that was at times brutal beyond what I'm capable of articulating. My mother told me that I looked so bad at times during my second stay that she could envision my death. I know these details don't filter through, but the reality is, in the best of circumstances, If I were to do this transplant experiment 10 times, in five years, with the most rosy dataset that I've scrutinized, I'd be dead 7 of those 10 times. If you believe either Stanford or MD Anderson, I'd be dead 10 out of 10 times within five years. So let's get back to rosy - 5 of the 10 deaths would be due to relapse of my cancer. t(3;3)(q21;q26.2) is really nasty - which is why I got fast-tracked to get a bone marrow transplant. That MDS is called 'pre-leukemia' is cute - t(3;3)(q21;q26.2) is a runaway freight train that most often leads to AML in two years. Small sample size isn't a "yeah, but" argument when all of that sample (n = >100) at two reputable transplant institutions dies within 5 years, and my rosy dataset is based on a smaller sample size than those other two. Now that I'm doing well after the transplant, it's easy to forget this fact, or maybe I never made it this explicit. I forget about it all the time, delusion, distraction. So does Dianna. So do all the people who care about me. I am planning on being here another 40 years. But be sober about this - I am hoping to have a 50% chance of making it to my 45th birthday. And don't tell me that statistics don't matter. I'm a scientist, and they do.

The other two of those 10 deaths mentioned above in the rosy picture? That I didn't survive the transplant. I just assume I will (I'm not done yet, I have 39 more days until I'm past this part of the statistics, which is why I'm still in Seattle), but 20% of people who undergo myeloablative transplants don't make it to day +100.

This can happen to anyone.

I found out about Janet through my friend Kim, who does tireless work for Be The Match, one of the larger organizations that get potential donors into the bone-marrow registry. Janet was young – I’m guessing 20-ish. I didn't know her personally. I do know that Janet has been a staunch advocate for Be The Match. She struggled for years to control her advancing leukemia while she waited to match with a suitable unrelated donor.

Recall that my own donor search yielded two perfect 10/10 HLA matches in under two months. Two weeks before I knew I had a match, there were 91 first-pass donor matches for me in the database that were being contacted for further typing. The reason for this disparity? There are a greater number of Caucasians and Ashkenazic Jews in the registry than other ethnic groups, and Janet was neither.

After years of searching, Janet received her bone marrow transplant on Sunday. The announcement of her death was today.

It is simply outrageous to me that ethnicity contributed to her death.

So, here’ my PSA (I should be allowed to do this on occasion. I just had a fucking bone marrow transplant):

Janet's death was likely preventable. In 2012, where 900 million people are plugged into Facebook alone, this kind of thing should not happen. If you are eligible and aren’t in the marrow donor registry, please get yourself in it. If you have hesitations, call or write me and let’s discuss them. Registration requires a cheek swab with a q-tip and access to a mailbox. If you know people who aren’t registered, particularly people who aren’t white, tell them that there are people like me who would not survive without donors like them. Tom Marrow has given me a fighting chance and at this stage of the game his marrow is the key determinant of my survival or death.

This is a picture of Janet’s friends (in the white shirts) who we met at the Be The Match run a few months ago. She was too ill to attend.

#Janet Liang #edited 9/12/12 11:30pm

Day +52: a long week

A lot has happened in the past week. On 8/25, Dianna, Carmen and the boys packed up two cars and headed home. I think Dianna perhaps liked the rented minivan a little too much and can see one of those in our driveway in the not too distant future. It was really hard to see them drive off and I miss them a great deal.

Zane started Kindergarten last Wednesday and was a little lukewarm in his endorsement of school for the first two days, but by Friday he told Dianna that he ‘loved it’ and dragged Trey into class by the arm as a show-and-tell prop. Dianna’s quite impressed with the school and thinks that Zane and Trey can both thrive there. It is hard to swallow that I’m missing out on this milestone but I get frequent calls from Dianna about what’s happening, so I feel like I’m being kept in the loop. I’m really glad Zane likes school. It reinforces our judgment call that this was the right thing to do. The kids appear to be quite happy to be back in their old stomping grounds with Erika in the mix and Auntie Kat has been visiting with them in San Mateo for the past few days so they have all been having a great time.

Seattle is just not the same with out my wife and kids and the pace of life has slowed considerably, which makes sense considering the kids need to be exercised or they will eat you alive. I’ve been trying to turn my brain back on, walk, ride the stationary bike and read as much as I can tolerate. I’ve been maintaining my weight and hydrating fine, so I successfully acquitted myself from my weekly appointments with my nutritionist. I’m still hovering between 180-185lb, which is about 10-15lb low for me and I’m easily dispatching 2500+ calories a day. Building a hematopoietic system apparently takes a lot of energy. This week I see a physical therapist about what kinds of exercises are kosher for me to do with a Hickman line still hanging out of my chest. They don't want me to bench-press, for example.

I am enjoying spending this time alone with my mom. She’s settled into a role I haven’t seen since I was in high school when I last lived with her, which is my mother the cook and occasionally the high-intensity cleaner and shopper. She’s been doing a great job in all of these roles and we have had a lot of time to talk, go out to dinner with friends and see movies. It has been nice to have her here.

Right around the time that Dianna and the boys left, I noticed I was peeing a lot more frequently than usual and guessed pretty quickly that I had my first urinary tract infection. I was hoping for the standard bacterial flavor of UTI but didn’t get that lucky. I’m infected with a virus that I had never heard of called BK (which is a polyoma virus for the nerdz in tha crowd and encodes a large T-antigen helicase similar to that of SV40 TAg oncogene. Rad, that). BK apparently infects about 80% of the US population and likes to take advantage of people who are diminished in their T-cell responsiveness due to cyclosporine and in my case, prednisone as well. BK infection is a big problem in kidney transplant patients and infections in these people is one of the main causes of failed kidney transplants. In BMT patients a BK infection sucks, but it wasn’t likely going to kill me. It attacked the cells lining my bladder (which were likely damaged by the metabolites of cyclophosphamide) and by the time they did the qpcr test for BK, they detected 220,000,000 copies of the BK viral genome per ml of my urine. This viral load translates into me peeing every 18 minutes round the clock for three days straight. That part got old really fast. I took pyridium and I’m pretty sure that this is a placebo - it doesn’t do anything but make you pee small amounts of orange tang. Then came diropan, which seemed to actually work a little. On day 4 or so Tom, who is proving that he is in this game to win it, found the right T-cell for the job and disassembled the BK, so I’m feeling much better now.

This whole experience further reinforces my belief that women are about 10,000,000,000x tougher than dudes. Peeing every 18 minutes sucks. Imagine breaking your life into 18-minute blocks. It’s hard to do much. Except pee.

Finally, in some drug-dependence news, I’ve been tapering off my prednisone for the past few weeks (which is comically called the ‘fast taper’ by my oncologist) and I’ve dropped from a high point of 80mg of prednisone daily (1mg/kg of body weight) to 25mg as of today. As I have been on prednisone for acute GVHD since day +21, my adrenal glands have basically been on vacation in the Bahamas and are not producing any corticosteroids. Tapering the prednisone like this is designed to wake my adrenal glands up gradually, but in my case, I think my Adrenal glands were still sipping mojitos, face-down, recently laid, and sunburned at the beach at 30mg of prednisone. Not so much at 25mg, which started today. I’ve been dead-ass tired alllll day. My adrenals need to sober up, pack hastily and catch the next flight back. Time to go to work dudes!

Dianna and the boys will be visiting in less than 3 weeks and I have a few friends who are going to come up to visit at various times in the next few weeks as well. I think that the remaining 48 days will go by quickly. I miss my family and friends down south a great deal and will see you sooner than you think.

Hiccups like the BK infection and the prednisone taper are all within the realm of expected hurdles, which is why the SCCA insisted on following me for 100 days. They have seen all of this before and know what to do. The team makes it a point to tell me that I’m still doing extremely well, and wished all of their patients were in my condition. I believe them. I'm feeling pretty good. I'm starting to make plans for the long game again. I can see my life as an old man and I like that.

Tom Marrow continues to prove himself. He is my guardian.

#seattle #viral infection #prednisone

Day +39: news dump, part two

As indicated in the previous post, my physical recovery could really not be going much better than it is right now. This has afforded us the luxury of taking our foot off the gas a little and evaluating our game plan at sub-light speed.

The original plan was for Dianna, Zane, Trey, my mother and our dear friend Carmen to remain in Seattle until 10/21, which is day +100 post-transplant. As I am from out-of-state, I had to sign a contract saying that I wouldn't bail on the program before that point - and I don't want to. They've been great and I see no reason to not be in the care of the SCCA. After day +100, if all arrows are pointing the same direction as they are now, I'll be released and do my follow-up work at Stanford.

The wrinkle in this plan was always that we were going to have to split Kindergarten matriculation for Zane between the Hutch School in Seattle and School in San Mateo. He has had an emotionally charged but positive summer being here in Seattle and we know that the split school thing wouldn't be ideal for him, but given our options, it was the only smart option we had with the information we had at the time.

Now we've got more information.

Zane was accepted to a public Montessori school in San Mateo a week and a half ago. It's a lottery school and the only extant K-8 public Montessori school in CA. Zane was wait-listed at #12 earlier this summer, which we figured meant that it wasn't going to happen. But we got the call. Due to demand, they simply will not hold a spot for him if he is not there at the beginning of the school year and we really want him to go. It's four blocks from our house in San Mateo and we have a childcare infrastructure set up at home that's hard to compete with. Zane also sets Trey up, as Trey will now have preferential enrollment in pre-K there (also a wait-list game), meaning that both kids could wind up with a virtual private K-8 education in San Mateo on a shoestring budget. Finally, I'm a Montessori kid. It's typically prohibitively expensive but I'm a big believer in how the system works and I wanted that for my kids. I'm hopeful that they will thrive as I did.

So, Dianna and the boys are here in Seattle until this Saturday. We'll pack them up and they will head home. I'll stay here in Seattle until day +100 with my mother as caretaker, who has the flex-time to work remotely. I'll get a visit at the halfway mark from Dianna and the boys, and I'll see Dianna a few more times here and there, but I'm going to miss my wife and kids like crazy. All this said, it feels nice to be basing decisions on my kids, rather than on my health. I'd much rather have it this way.

So, most of the Zeiner clan will exit stage left and resume life as normal people. I'll be joining them shortly.

#Kindergarten #San Mateo #Seattle #Zane #new plans

Day +38: my awesome coworkers and more good news

My good friends and coworkers Peter and Brooke visited me separately this weekend and it was great to see familiar faces and chat. I got to hang out with Peter for a while over lunch and a small IPA as he's on a MTB road-trip that took him through Seattle en route to Whizzer (I am green with envy). Brooke came up to see her family and took time out to have lunch with Dianna and I. She had a carry-on suitcase that housed the most patently awesome care package I've ever laid eyes on.

I should preface the above by saying that we have received an outrageous amount of support, cards, gifts and love all around from everyone. Seriously, thank you to all of you.

This care package was simply over the top. I've taken a few choice shots of it:

Here's the composite. My prime lens couldn't see all of it, so I had to glue two pictures together. Which I did poorly.

"Daddy, look. 937 pages!". I just finished Reamde, and it took me about 4 months. Stephenson needs to hire an editor that doesn't suck. But he is a great writer.

This is from Dr. Smart, organizer of said care package. For my balditude (worse than normal. I'm a manchild now, but still have eyebrows). Brian also made me some jewelry.

From Brooke (aka. Unicorn girl). Following the above theme - one of the early jokes was that if I lost my eyebrows, I'd color in just the unibrow part above the bridge of my nose and take a picture for Brian and Brooke. We decided to name it too. I'm sure you can figure it out.

The Scheffersaurus. Alicia recently purchased a 6-foot steel brontosaurus and put it in her front yard in San Jose. That is just all kinds of awesome.

Caro has some life changes happening too - she's having freaking TWINS! When we were postdocs together, I used to give white elephant gifts like these and Caro got stuck with my gift one year. So, she re-gifted me Smokey and the Bandit! Payback is a bitch!

I can't garden for a year due to all kinds of cute bugs that live in the soil - fungal spores, ascaris eggs, etc. So, Chong gave me a solar-powered, fungus-free Agilent plant.

So, the coffee in Seattle doesn't suck at all... but it's no Barefoot, I don't care what anyone says. I asked for "anything from Barefoot that is from Guatemala, El Salvador or Costa Rica". I got three Palo Blancos... which is my favorite bean there. Javier, El Joel and Alice all have extremely good taste. You should know that when you work with a bunch of advanced R+D engineers, there will be a few surprises. Javier went an extra step:

This made me pee a little laughing.

Dr. Peter wanted to send me a burrito or fish taco bigger than my head, but said these packed better. I miss burritos, but tamarindo and plantains don't suck. And I'm cranky, so that fits.

From Doug and Gigi. It turns out that when you're French it's a law that someone in your family has to do something awesome, like make a grand cru in bordeaux, or own an olive plantation for 100 years and make kick ass 750ml bottles of French olive oil. I want to drink this. Seriously, I might. I need 3000 calories/day, right?

From Allan. Allan is currently kicking melanoma's ass up and down the block for the second time in his life. He's an inspiration. He wanted to send me some music. His tastes in genres span space and time, and this selection is straight-up rad. It actually works as a long playlist. I am enjoying it immensely.

May and Rebecca aimed straight at my sweet tastebuds, which still haven't shown up yet (bitter, sour, umami and if I put a gram of NaCl on my food, I can taste some salt. Trey and I have pretty much the same diet). Zane immediately jumped up on the bed and absconded with the Angry birds (and Kristen's sugar legos):

He then built a rocket and ate it in front of me.

Paige got me some more awesome socks. I sure hope she rides in these. I like awesome socks. Your feet need style, too.

There were also some Zen garden supplies, as well as some sculpture magnets (pictured). I'm not sure who these were from, but thank you for those as well.

Saw brownies and thought, wow, that's ballsy to bring on a plane! The tag fell off so I don't know who these are from. Turns out they're unleaded brownies. Delicious nonetheless. I ate.

Dr. Nick. Seriously, is there anything that bacon doesn't make better?! I see the bacon-infused chocolate market as an underserved need that Agilent Labs should be aiming big research guns at.

I'm going to have a field day with these. Did I mention that I'm a hairless manchild? I'll be like Guy Pierce in Memento. Well, maybe not quite so handsome. But he prolly can't do RNAseq. So we're even.

Peter and Mary, being, well, Peter and Mary. Simply absurd, perfect baked goods. Funny part - it's an ersatz Pliny - Peter and his friends fucking drank it (probably saving me a trip to the ER, so thanks for that). Funnier - Peter is a fellow insane mountain biker and when he dropped off the package I asked, "Hey Peter, can you get me some GoPro footage from Squealer?"

"I can do one better, check the bag". The last time he rode there, he grabbed a fistful of dirt and leaves from the trail and put it into a ziploc bag. Says it's like dude potpourri. No hornets tho.

We are overwhelmed by how hilarious and sweet this was. It made Dianna cry a little to read the cards and see so much personalization in the gifts. Really great work!

Some other news that's worth reporting too:

It appears that now the manual differential, flow cytometry, FISH with an EVI1 rearrangement-specific probeset and the old, slow gold standard karyotyping were unable to detect the original cancer at this stage.

This is simply unbelievable news.

I am not out of the woods yet, but nothing could really be going much better at this second. I will embrace the news as it comes in.

What a great day.

#Agilent #care package #home!#hilarious #FISH/karyotype results!

Day +31: surprise news

Last thursday I had my first post-transplant bone marrow biopsy and aspiration. Those still hurt, but I'm getting better at dealing.

As some of you may know, Tom has been engrafting with a ferocity that has baffled my oncologists. I technically was >500 neutrophils/microliter for the third straight day (thus constituting 'engraftment') eleven days ago. Back in November 2011 when it was noted that my CBC was amiss, I was at 1300 neutrophils/microliter (neutropenic is under 2200/microliter), and my red blood cells were too sparse and too big - my hematocrit was 32-35, and the volume of each individual red blood cell was 104 femtoliters as opposed to being under 100.

Fast fowrard to now. As of today, I've got normal platelets (217,000/microliter), my hematocrit is holding steady at 35 (the RBCs are some of the last to recover during engraftment), and neutrophils and whites blood cells? Neutrophils are at 6200/microliter (mid normal range) and total white cell content (all neutrophils, macrophages, other professional antigen presenting cells) are at 9840/microliter. My RBC volume is now a healthy 93 femtoliters.

I'm basically hematologically 'normal'. The marrow tech remarked that he couldn't believe that I had so much marrow +27days after a myeloablative transplant.

That's right. I impressed the tech.

And now, here's the most encouraging part - the results below from my bone marrow aspiration and biopsy are preliminary and we still need to see the karyotyping and fluorescence in situ hybridization tests to know for sure (which we'll know later this week or next), but two tests are back. And they're remarkably encouraging.

These are the results of flow cytometry: "NO ABNORMAL MYELOID BLAST, MONOCYTE OR MYELOID POPULATION IDENTIFIED. NO IMMUNOPHENOTYPIC EVIDENCE OF A MYLEOID STEM CELL DISORDER IS IDENTIFIED, E.G. MYELODYSPLASTIC SYNDROME OR MYELOPROLIFERATIVE NEOPLASM. HOWEVER, A LOW-GRADE STEM-CELL DISORDER CANNOT BE ENTIRELY EXCLUDED AND CLINICAL, CYTOGENETIC AND MORPHOLOGIC CORRELATION IS REQUIRED"

These are the results of the manual differential: "BONE MARROW, 28 DAYS POST TRANSPLANT, FROM THE LEFT POSTERIOR ILIAC CREST, SHOWING NORMOCELLULAR TRILINEAGE HEMATOPOIESIS...THERE ARE NO OBVIOUSLY DYSPLASTIC FEATURES".

I wasn't ready for this news. I was hopeful but not prepared to hear that I'm doing this well by this first test. There's no graft vs. leukemia response yet, so this was strictly a measure of how well they scoured out my marrow (pretty well, apparently - I had 0.00 neutrophils for 10 days. Dead marrow. Four red blood cell transfusions, three platelet transfusions. I was not making any new cells).

I'll feel better after we get the karyotype spreads and FISH back and these confirm the flow and manual data, but this is cause for celebration.

As of right now, HAD cancer!

Once again, fuck you, t(3;3)(q21;q26.2). The SCCA and Tom Marrow have your number.

Day +23: hornets and ninjas

Well, it appears that the attending oncologist with 35 years of GVHD experience had a good hunch. I don't have C. diff (Sorry Scheffer). I do have low-grade Tom vs. Gus disease in my guts. I was started on 80mg of prednisone, as well as a few pills that have a steroid oil that coat the insides of my intestines. That should do the trick.

I don't see acute GVHD as a bad thing - 90% of people get it. In some ways I'm reassured - to me this says that Tom is really doing his job well, he's hunting (just a touch overzealously). I imagine his T-cells look like the one on the right. Take out my tardmarrow, Clubber Lang!

I've been out of the hospital for two days now and I'm just bone exhausted. I'm sleeping a lot and my mood is improved considerably, but it's really a struggle to eat. I'm told that this is partly due to the GVHD and my appetite will come back as the prednisone takes hold. Still, this is a pretty intense ride. Dianna is a straight-up Rockstar and has been happy to make me any variety of food I desire. She does't get offended when I can only eat a few bites. I married a good woman. There's no way I could do this without her.

#home #gvhd

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