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 +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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.