Sam leaned against the wall of the dark, packed elevator, eyes closed, wearing a mask. His jeans were covered in vomit. I stood guarding him from falling over and guarding others from the sick person in the clinic, while staring distantly at the floor.
As the door began to open to the sixth floor, I realized how stereotypically “cancer treatmenty” we must have looked. Or maybe something more along the lines of how the cast looks at the end of “The Hangover 2.” They don’t know why Sam can’t keep any food down this week, but the triage nurses got him set up with warm blankets and a bag of fluids, and the excitement died down shortly after we arrived. Sam fell asleep after a few rounds of questions from the nurses. I sat in the dark and played calming music from my phone. Yesterday as we were leaving the clinic after having the same kind of morning as we were today, we learned that Sam’s peripheral blasts shot up to 5%. There’s no option to blame a computer error now. That means that, more than likely, he’s already relapsed and thus, missed his window for the bone marrow transplant, which is his only shot for a cure. A few songs later, the new attending doctor on the Bone Marrow Transplant service came in to meet Sam. They discussed Sam’s nausea and vomiting for a while, and he admitted he didn’t know what is causing it. Next, he addressed the peripheral blasts we’d learned about yesterday afternoon. As we feared, he said he would not recommend a transplant with active leukemia. He said that while Sam’s chances of surviving a transplant remain low, going in with active leukemia means that even if he survived the process, there’d be a high likelihood that his leukemia would relapse once again after it was all said and done. He said he’d set us up with a meeting with Sam’s original chemo doctor – the one who convinced us to come down here and got him into remission back in November. He said she’d be the one who could discuss ongoing clinical trials that might be able to get Sam back into remission without the regimen being too toxic for his system. We’ll meet that doctor tomorrow afternoon to hear what she’s got for us. Meeting with her under these circumstances feels like groundhog day. I’m struggling with the fact that this means that the last three and a half months of Sam’s suffering were for nothing. Sam reminds me that he’d be dead by now if we hadn’t come down, which puts things in a dark, yucky kind of perspective. The doctor left and the lights dimmed again while Sam’s IV fluid drip continued. He fell back asleep. Sitting in the dark once again I realized I’m pretty angry that the doctor last month didn’t jump at moving forward with Sam’s transplant during the short window when he would have been eligible. I’m frustrated with “the system” of the Seattle Cancer Care Alliance. I could rattle off a few other upsetting things. But when I really think hard about it, I realize that I’m just mad at cancer. Really mad. I’m mad that Sam isn’t up for doing the things he loves. I’m mad about all the experiences we’re missing out on, with each other and our friends. I’m mad that he’s fighting this for the third time. I’m mad about a buncha’ things, but how useless is that? Sam’s IV pump stopped. He was disconnected and the nurse told him we were free to go, after giving instructions on how to deal with his symptoms the rest of the day, and to call if things worsened. We shuffled out into the hall, this time carrying a bag containing Sam’s vomit-pants, which had been replaced by the most comically massive scrubs you could imagine. We wandered back into the corner of the elevator and out to get in the car looking slightly less “cancer treatmenty” on the outside, but very much more on the inside. Sam fell asleep almost immediately when we arrived back at the apartment. I took myself out to lunch. I laid down by Sam a few hours later as he woke up and he said something that made me laugh. It felt so good to do so after these awful two days. I remembered that, though it sucks, we are capable of making the most of this time. I remembered that while the world and the treatment system and the myriad of doctors and specialists feels big and scary, at least during it all, we can lay in bed together and laugh about how terrible today was for Sam’s pants. As communications professionals, Sam and I are always yelling at our program, science and legal staff for not properly celebrating our victories.
"State takes initial steps to protect clean water, but fails to address [x bad, related policy]," doesn't exactly instill confidence in the hard work of our advocacy team, than it would if we just took the time to celebrate our accomplishments for a whole news cycle and then move onto whatever needs to happen next LATER. All this to say... we're being hypocrites today. As an update to my concerned post from Friday, Sam's labs showed NO peripheral blasts today. This is undoubtedly GOOD NEWS. But, his white blood cell count is still dropping, and he needs transfusions for platelets and red blood cells, so it still seems as though something is awry. So we're happy, but we're nervous too. We're always nervous. But a little more so than usual. The other thing going on this week is that Sam's transplant team is convinced that his BMI needs to be higher before going into his transplant. We tried convincing them that Sam has always been a skinny guy, but apparently there are a number of studies out that show that mortality rates are higher/too high for patients under a BMI of 18.5, which Sam happens to be under. Since we're on a race against the clock before he relapses (he can't have more than ~5% blasts to be eligible for his transplant, and last time they checked a month ago he was at ~0.25%), he won't have time to gain the weight "naturally," e.g. by eating a shit ton of cheeseburgers. So, they are going to surgically place a feeding tube into his stomach this week. While it isn't a big deal medically speaking, it's a psychological blow to Sam who is understandably pretty sick of procedures and tubes and home infusions and constant reminders of his illness. Of course, there are a ton of tests each week that I don't even bother to blog about because then I'd never stop typing. So it's one more thing. BUT hopefully one more thing that gets him closer to a transplant, and a cure, and back to our home. So anyway, that's the less-than-celebratory but honest update. This week we'll hope that his dropping blood counts don't lead way to blasts anytime soon, deal with the feeding tube placement, and hope that next weekend brings more hikes through big trees with Birkie. This week started out with Sam getting a package in the mail from the Green Bay Packers, and me getting my bridesmaid dress for a bff's upcoming wedding (these are two items of roughly equal excitement, respectively).
We worked hard at our jobs - Sam when he was feeling up to it and in between appointments, and me as much and as hard as I could knowing I'd need to be out for his appointments later in the week. We walked Birkie, went out to dinner and had one of the closest to "normal" weeks we've had since being down here. But then today the clinic took the wind out of our sails again. Sam's PA told him that his labs showed blasts in his peripheral blood today. She said "not to freak out" since it only shows 1%, it could be a fluke or machine error. But the thing is, it's impossible not to freak out. Because if there are blasts in his peripheral blood that means there is enough leukemia that has returned to his bone marrow that it's escaping into the "peripheries," e.g. where they draw blood from his PICC on his arm. Returning leukemia would make him ineligible for transplant, which is really his only hope for a cure right now. So, we'll re-test on Monday and "make a plan" early next week. But now instead of escaping to the mountains to breathe fresh air and see more of Washington's coast, we'll go through the motions of escaping to the mountains and breathing fresh air and seeing Washington's coast, but really we'll be thinking about Sam's potential leukemia again and what it means for the weeks ahead. I'll update you as soon as we know what's going on. Also, we are still going to make brunch. And not even blasts can take the joy of brunch away. Overwhelming. It’s the only word that comes close to capturing the inspiration I felt reading all of the #31forSam posts. From Alaska to Wisconsin, New York to Idaho -- from skiing to meditating, walking to giving blood -- from family to complete strangers (by the way: Nice to meet you & thank you!). So many of you got out and did the things that are important to me in life -- being outside and enjoying the present.
And this high dose of inspiration came at the perfect time. Going to the clinic day-after-day to undergo tests and procedures to try to get me ready for a transplant that doctors say is highly unlikely to work can be depressing. No matter how hard one tries to stay positive, it can be easy to get sucked into a psychological abyss and feel like giving up. If I’m honest, that’s where I was two weeks ago. I woke up on my birthday only to throw my back out in the process of choking on a giant pill. I crawled my way to bed and lay flat on my back, trying to catch my breath as the pain knocked the wind out of me. Then something special happened. I picked up my phone and started looking through the #31forSam posts. Seeing so many of the people and places I love, hearing from old friends I haven’t seen in years, warmed my heart. Your posts reminded me how lucky Jenny and I are to have such an amazing community around us. You renewed my inspiration to fight -- to swing for a cure no matter how low the chances are and to fight for each day. To have Shawshank Redemption-like hope. To get outside and walk with Jenny and Birkie whether that means going half a block from the apartment or two miles through the woods. I am beyond grateful, and, despite my attempts to respond individually, I became overwhelmed and fell short. So whether or not I’ve gotten around to replying to your texts, emails and posts, know that I appreciate it more than you know. This world is an amazing place. Take some time tonight to breathe fresh, cold air and look up at the stars. Be present with someone you love, make a stupid joke, and remember that every moment we’re given is a gift. And when you do, please know that I am forever grateful to share my time on this planet with amazing people like you. You can tell a lot about someone by looking into their eyes.
Maybe it’s the post holiday break rush, but the five elevators at the clinic were packed every time we rode in them for Sam’s tests and appointments this week. Elderly couples, parents with kids in strollers, middle-aged men traveling alone with briefcases, and Sam and I. We all cram in. We’re all headed to appointments to be diagnosed, treated, evaluated, and infused. Our demeanor varies, but our eyes are all the same. None of us want to be here. To acknowledge another person is to say with your eyes, “I’m sorry you’re here too.” Because of the clinic’s stringent policies on interactions with patients who have any virus, as Sam does, Dr. Storb and the transplant nurse Cindy were dressed in yellow gowns, gloves and masks complete with plastic eye shields to talk with us about the transplant yesterday. Literally, all we could see during our meeting were their eyes and the tops of their heads. Sam and I knew this meeting wouldn’t be any fun. Learning about the transplant process even in the abstract is pretty nerve-wracking. Assuming the tests Sam is undergoing now conclude it’s “all systems go,” they’d start the process by the end of the month. They would give Sam six days of chemotherapy and two days of radiation to completely knock back his existing immune system again, which is now his Dad’s (because he was the donor for Sam’s last transplant). Once Sam’s current immune system is back down to nothing, they’d transfuse the stem cells from two, currently frozen umbilical cords, which are set aside just for him. The hope is then the two new potential immune systems will fight it out within his body and the stronger one will take over and become his new immune system, and fight off any leukemia that tries to come back as the rest of his cells regenerate. Going into the meeting, we knew Sam will need to still be in remission when they are ready to move forward with the transplant in about three weeks. We knew his body needs to heal from his (non-leukemic) current ailments, as well as pass all the tests they’re doing to determine if his organs can handle the stress of transplant. This would all be a feat in and of itself. In our meeting, Doctor Storb continued with what else needs to happen for this transplant to be a success. First, he questioned whether Sam would still be in remission, and therefore eligible at all by the time he’s ready to get going. If he is, the toxicity of all the chemo will threaten his already-damaged organs even if he passes the tests this week and he’s concerned it will be too much given Sam’s recent troubles with is kidneys and liver. He is at high risk of serious graph versus host disease again because of how badly he’s had it in the past – he’s still dealing with it today. The ‘no immune system’ time period will be really dangerous. It’s when Sam would be susceptible to a whole host of infections, like before. With a cord blood transplants, however, this dangerous time period lasts longer because the cords are from an infant who has not yet built any immunity to share. If he survives all this, there is still only a low chance the new immune system will be able to defeat Sam’s extremely aggressive form of AML, which due to a “chromosome 7 deletion,” is one of the nastiest. Whatever that means. Dr. Storb paused after explaining all this. We saw his mask suck in as he took a deep breath, and his eyes softened. “I’m sorry I don’t have better news for you,” he said. “But unfortunately this all means that the chance of success is extremely low.” He guessed Sam’s chance of survival is around 5%. He called the idea of a transplant “a real Hail Mary” at this point. He said he would ask another AML specialist to review other potential treatment options, including any at other institutions that might offer better chances for Sam. After Nurse Cindy and Dr. Storb left the room, Sam and I sat there quietly. We were a little stunned, but not as much you’d expect. We’ve stared into many saddened, softened eyes to have similarly hard conversations with a number of skeptical doctors now who are afraid of attempting the transplant that might, “shorten Sam’s life.” We knew it was risky, but it’s clear that Doctor Storb doesn’t want to do this transplant. It is, admittedly, a little more serious to hear it coming from the guy who is supposed to do the job. We know that doctors don’t have crystal balls, that 5% doesn’t matter and that there is some chance it will work. But it doesn’t get easier to hear. After all, we came to Seattle thinking the chances were greater. After that meeting, Sam went to the infusion center to get a platelet transfusion. I cried in the bathroom about 5%. It’s hard to put a number that small out of your head, and it’s hard not to feel frustrated about packed clinics and sad doctors and endless appointments and not just spend all your energy hating cancer for a few minutes after something like that. Which is what I did. The good thing is, there’s never any shame in walking through the clinic with puffy, red eyes after crying in the bathroom. As I walked, I saw all these people filling the clinic, believing in the doctors. I knew then that if Sam is eligible to move forward, I’ll believe in the sad-eyed doctors, and I’ll remember that the appointments aren’t endless. I’ll know that if we continue down this road, we’re doing so because we have to believe it will work. (Why else even try?) Still, while I know that it’s important to be hopeful, I also know that we need to grapple with reality. It’s not fair to Sam if those he loves have our heads in the clouds about what he’s dealing with while he is left to face the facts alone. It is certainly hard to balance the two. In the car on the way back to the apartment after his infusion, the salty, dried tears on my cheeks strained my smile as Sam looked at me and goofily sang Don McLean’s, American Pie, which had come on the radio. All these tests and decisions and treatments were done, and singing silly songs on the radio is more important than ever. It was the best look of the day. Today at the clinic I was feeling really overwhelmed with trying (and failing) to be here and fully present for Sam as he meets his new transplant team and learns new procedures, while also working remotely full time.
I care about my work so much and don’t want to let my colleagues down – they are doing important work for Alaska conservation, and as a community, our efforts can use as much help as they can get right now. And yet of course, helping Sam in any and every way I can has to be my priority. Juggling these two things is an ongoing challenge for me. Today, our first day back after a wonderful winter break, I was so aware of this as we launch into new transplant protocols and workups, and as work picks back up before the legislative session and the inauguration of a decidedly anti-conservation federal administration. Sitting in the clinic lobby while waiting for our ride back to the apartment, I was frantically and frustratedly trying to get work done before being offline yet again. A woman was on the phone next to us having a difficult conversation with a far-away loved one about her day at the clinic. These conversations are hard to listen to, but so common here I usually don’t pay attention. I vaguely heard her explain to the person on the other line about the new tumors that had been found, and her risky treatment process. She was so strong and forthwright when she explained what she’d learned today about her treatment plan and prognosis. After pausing a while to listen to the person on the line reply, she continued. My ears and heart heard her so loud and clearly when she said, “You guys are my everything. It’s just so hard that you are not here.” It was only then that she started to cry. I was of course instantly brought back to reality. Though it's hard, I am so lucky to keep my job but be beside Sam every day. I wanted to run over to that lady and give her a huge hug. She must be so scared and lonely. But just then, she wobbled off to her cab and left for her hotel – her only home besides the hospital right now. Sam has been dealt a difficult card when it comes to his health, but we so fortunate in a million ways. Hey everyone, I'm happy to report that we had a really nice Christmas.
Just before the holiday, Sam's team discontinued this awful anti-fungal drug he was on, and started him on a new one. When they did, he started feeling better right away. His liver and kidney functions have returned to normal (or closer to normal), the nodules on his lungs are shrinking, and his energy and apetite have bounced right back. And, we are both sleeping much better too. The drug they stopped was a 14-hour home infusion that involved waking up a number of times throughout the night to keep it going. Whew - I'm so glad it's done! Anyway, this recovery period finally feels like just that... recovery. I'm happy to say that within the last week or so, we've made the most of it! We've made and eaten tons of great food, gone to walk around new parks with Birkie, watched movies, checked out new neighborhoods in Seattle, hung out with family, eaten more great food.... etc. Just this afternoon, Sam's doctor gave him a call to say goodbye and that next week she'll be "passing him off" to the transplant team. We're sad to say goodbye to her, but this is a good thing! It means that his complications have cleared up enough that he's ready to move onto the transplant team and toward the next step in his treatment process. Next week, he'll start a series of tests to ensure his body can handle the transplant process. If all goes well, he'll be admitted back to UW Hospital (Washington, not Wisconsin) to get some new, leukemia-fighting stem cells. Due to the timing of this, Sam'll be down for the count during his birthday once again this year, which means I'd like to bring back the #31forSam challenge! Click here to check out the page and learn more. I'll admit that, of course, I'm extremely nervous about what lies ahead in the hospital. But, we know from experience that it's important to be 'in the moment' and cherish each day before we have to deal with all that again. I'm so grateful for this time we've had, and plan to make the most of the next few days. I know you all love to hear good news, so I wanted to share! Now we're headed out for a little hike with Birkie... Hope everyone is having happy holidays. When Sam and I met and first started dating, he was recovering from A.L.L. - his first leukemia treatment. He was still on maintenance chemotherapy and steriods, so he was weak and puffy. But he had this very Sam-like drive to get. the. f*ck. back. OUT THERE - at any cost. (If you know Sam, you know that "Sam-like" is really the best descriptor of this drive.) So of course, while still on chemo, he decided to take me on a 35 mile bike ride out to Paoli and back. It had been YEARS since I'd been on a bike any further than from my apartment to The Chocolate Shoppe (Madison's finest Ice Creamery) and back. I was not in shape and wouldn't have considered myself "active" or "outdoorsy." But you know, I wanted him to think I was cool, and fit, and all such things. Plus, he was still on chemo for christ sake! So I said yes to this ride idea. (I was also broke, so I called one of my parents and asked them to buy me a bike helmet.) Anyway, Sam gets all suited up in his road biking kit: clip-in shoes, spandex bike shorts, bike jersey, gloves, glasses, etc, and then tunes up his fancy carbon fiber road bike. You get the picture. I, of course, don't have any of that... or a bike, except for the one that's rusted and locked onto a bikerack somewhere in Madison - and I had no idea what the code on that lock may be. It's probably still there now. "Not to worry," Sam said. He pulled out a single-speed mountain bike for me to ride along with him for our 35-mile inaugural ride together. I now know how ridiculous it is to set out with a fancy road bike and a single speed mountain bike and expect to ride "together" for any distance, but that day I just rode along as fast as I could, and he knew my ignorance made us the pefect pair as he got back into biking shape after treatment. It worked out perfectly. We both had a fabulous ride, and cheerfully and exhaustedly ate loads of pizza when we were done. ---
Eventually I'll have to admit to you that I haven't been blogging because this round of treatment is sucking too much to tell you honestly how I feel about it like I did last time. I guess that's right now, huh? Last time, I was learning how to be a caregiver and how to process hard things. I was learning a new medical language. Now, I'm familiar with all of it and I guess I'm a tad bitter about needing to use these skills again on a daily basis. I think that knowing that my bitterness might shine through on the blog has been keeping me from writing because it's difficult to admit to not handling things well. I've also told you a story of "normal" Sam and Jenny time because I so desperately miss "normal Sam and Jenny" that even typing out that sentence hurts my soul and stings my eyes. --- Back to now. Sam has been out of the hospital for three whole weeks - in a row! This time period is supposed to be his chance to allow his body to recover before going into the intense transplant process. While some recovery has happened, the past few weeks have been full of ups and downs. One complication will recover or resolve, and then something else pops up. Because of the rollercoaster, it hasn't been the rejuvinating time he needs. I won't say, "the rejuvinating time that we were hoping for," because I think we're smart enough not to get our hopes up anymore and just roll with the punches. Anyway, more concerningly, due to the rollercoaster, the "recovery time" also hasn't instilled much confidence in us or his doctors about how the transplant will go. Luckily, there is still time for that confidence to build before we need to forge ahead. Specifically, right now we are hoping that the nodules in his lungs (aka pulmonary pnumonia) go away. His liver and kidney functions are on the mend, so that is nice progress to see. --- I'll end this scattered post by saying that while there is a lot we both wish were different this holiday season, there's a lot to be grateful for too and I'd be remiss not to mention it. First, he was WAY more sick this time last year, so Christmas is already looking up in comparison. Second, we'll be with his family, and what more can you really ask for than to be with family? We also are fortunate to have health insurance, and a support network that is what I consider to be an indelible army of warriors, pray-ers, partiers, joksters and saints. A.k.a. someone is ALWAYS there for any mood, need or occasion :) Thank you for being there and reliving stories with me. Happy holidays, everyone. We love you. Well folks, it's time for another edition of the good, the bad and the ugly. Brace yourselves, this post will likely be more on the technical side for those wanting to follow along with the details. If you're thinking, 'geez, I'm sick of these technical, boring, medical mumbo-jumbo updates.' Let me tell 'ya: ME TOO! (Not that anyone says "mumbo jumbo" anymore.) I wish I had something else to share with you guys. But our life these days is full of treatments, tests, drugs and waiting... and not a whole lot else. It's not fun at all, but luckily we have all your friendship, support and the hope of getting back to our glorious life and all of you at the end of this that keeps us going. Ok. here goes: The Good.Sam's bone marrow biopsy came back, and it told us he is in remission! (More accurately, he is in "remission without count recovery" at 0.1% blasts. You're allowed up to 5% to still be considered in remission, so this is not perfect but still very good.) The chemo did what it was supposed to do, and what the chemo in Wisconsin was unable to do. Considering any other result would have meant the end of his treatment, we are thrilled they were able to get him in remission. Hip, hip, hooray! Along these same lines, his blood counts have continued to recover, meaning his immune system is coming back. He's no longer at low levels where any little infection will make him dangerously sick. As his immune system came back, most of the problems he was admitted for last weekend have improved. The first question out of Sam's mouth when he heard his improved neutrophil count today: "Can I eat sushi yet?" (They said yes.) Since his counts have recovered very well, he was released from the hospital yesterday, and we are staying back at the apartment in Seattle with the Weises. There's more! Today we found out that they were able to find a donor for Sam's double cord blood transplant. So, when he's ready, they'll be ready for him. I am amazed and immensely grateful that a mystery team of people worked to make this happen, and a two mothers we've never met made a donation of their umbilical cords after giving birth. YAY. for. that. The Bad.While this is all really great, unfortunately he has a ways to go before he is ready for the transplant. I wish we had been more in the mood to celebrate all the good news, but there is always so much piled on that we're feeling overwhelmed and it's hard to stop and smell the roses. We try to as much as we can. But, you know, it's just a lot. Anyway, his liver function levels are still not healthy and he likely still has a fungal infection in his lungs. (They'll check in with a CT scan on Monday to see how his lungs are doing. Hopefully they're already looking better.) This is all important because they don't want him moving to transplant with either of these conditions, especially the liver issues. Since the drugs they have to give during the transplant are so harsh, he needs to have a healthy liver going in... meaning they can't start the transplant process until they see his levels come back to normal (or closer to normal) levels. The Ugly.All this was feeling tough but tolerable until today it became increasingly clear he is still dealing with some pretty aggressive Graph Versus Host (GVH) disease. If you've been following along with Sam's journey, you probably remember that GVH is what had him in the hospital for over two months last winter and almost killed him. And then after he recovered and we moved back to Alaska, his GVH made a nasty resurgance this June that put him in the hospital, and then continued causing trouble the rest of the summer.
When we were in the hospital last week, the doctors suspected that the issues he's having with his GI tract, liver and eyes are due to GVH, but they weren't sure. Then today, he woke up with a rash on his cheeks, chest and back and his doctors confirmed it was consistent with GVH. So now, not only will they not consider transplant until the liver, lungs and GVH have improved, we also know how quickly Sam's GVH got out of hand last time and how serious and scary and awful it is. They've given him drugs to begin treating the GVH right away, but they're the same ones that didn't work quickly last time (because there are no alternatives). This is freaking us the f*ck out. When we considered going through this again, my primary fear was Sam having to ever experience the misery of GVH again. Now, potentially going through that again knowing that also it blocks the chance for his transplant sounds truly terrible. So. If you have the time and the emotional capacity for adding one more thing to your list, please join us in hoping these drugs kick in right away the GVH doesn't get out of control and Sam can move to transplant as quickly as possible. As always, thankyouthankyouthankyou so much for the love. Hey! To all of you who paused on Thanksgiving to send good vibes, prayers and well-wishes to Sam: it worked! His immune system is finally 'back on the map' today with 130 neutrophils. Thank you for the amazing love you share with us. We are so grateful for you all. (Up next: bone marrow biopsy next week to see if he is in remission and able to move on to his bone marrow transplant.)
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