Yesterday morning, Sam’s dad drove Birkie, Sam and I to O’hare at 3:45 a.m. from Madison to catch our early flight to Anchorage. The travels went smoothly, and we arrived to a beautiful, sunny morning in Alaska with some good friends there to pick us up, toss Birkie’s massive kennel in their truck and take us home. (HOME! Woooooo!) When we walked into our apartment, our friends had cleaned, stocked our fridge, bought dog food (and a dog food “vault” so Birkie doesn’t decide to eat it all at once again!) and decorated. There were all kinds of pictures with stories and letters. We were blown away. It was the best way to come home after being gone for so long. We’d have been happy walking in anyway, but that made it ten times sweeter.
We unpacked for a while, and then decided we needed to go enjoy the day. Sam grabbed his backcountry touring skis and I put on winter trail running shoes, knowing that I could probably walk at the same rate as his ski-shuffle. The trailhead at Glen Alps was so bright and sunny with bluebird skies – we watched two paragliders coming down off flattop with some kids who were in the parking lot, and then headed out. We made it about 50 yards down the trail when Sam hit a patch of ice and went down – hard. He made the worst noise in the world when he landed. I unstrapped his poles and skis from his boots and tried to help him up, but it was clear he was in a lot of pain. Together we got him standing, but walking simply wasn’t going to happen. He’s thrown his back out a number of times and his body is simply beat up from months and months of treatment and very little recovery. As we were figuring this out and trying to make a plan, a person came down the trail, who we learned was a pediatrician named John. We told him that Sam has leukemia and a thrown out back, and had just wiped out. He was writhing in pain, so John solicited the help of a couple other passersby to carry Sam off the trail and get him into our car. His leg was bleeding a lot, but the two bags of platelets they gave him back in Wisconsin for flying did their job, and his wound started clotting. I took him to the ER to get everything checked out just in case. They cleaned up the wound, gave him more platelets and took some x-rays. Unfortunately, the x-rays showed that part of his pelvis is fractured, explaining the pain. It took them a long time to get the pain under control last night - it was a very long night overall. We had to get over our disappointment of not being able to sleep in our own bed, which we’d been looking forward to, and try not to think about how this complicates Sam enjoying his time here going forward. We spent most of the night in the ER and eventually moved to a hospital room. I don’t think I have ever been as tired in my life as I was last night siting in that plastic ER chair. It was after midnight Alaska time, so 3 a.m. Wisconsin time, before he was assigned a room – I’d been awake for nearly 24 hours, but had barely slept the night before or on the plane. When we got to our hospital room, I passed out on another familiar cot, and luckily Sam slept too in his drug induced haze. This morning we are still here at the hospital waiting to hear the plan for how they’ll get the pain under control to get him home, whether he’ll need any operation, how long until he can bear weight on his hip, etc. I’m trying not to think of what he can’t do, and trying to focus on the fact that we’re finally back in Alaska together. When I get down about all this, Sam reminds me that things are ok. He’s amazing. In addition to Sam’s incredible ability to take it all in stride, I think about how we’re just a few miles from home now – closer than we’ve been in six months. I smile knowing two friends have Birkie and she’s probably happily cuddling with them on the couch. I’m filled with gratitude that our Anchorage friends are coordinating on going over to our house to clear a path in the ice for a wheelchair to get to the front door. I’m tired of needing so much taking care of, but so grateful that we have the help we need. It’s amazing. It sucks that this happened on our first day back, but it’s wonderful that yesterday, Sam got to do his favorite thing – ski in the mountains. A few months ago we worried he’d never get to, so I guess a few minutes is better than nothing. Anything else that tries to get us down can bring it, because I'm feeling feisty. Here’s to making the best of whatever comes next. Like a river, we all drift on time. With a current too forceful to fight, time carries us through life, our surroundings ever-changing. The oars can get us from one side of the river or the other, but there’s no going back upstream. How and who we choose to spend time with defines who we are as people and colorfully fills in the lines called life. Time is our most precious currency, and when I say “spend” time I mean it literally. Just like money, there is always an opportunity cost, a choice, for how we choose to allocate our time. I am so lucky to have so many amazing people in my life who have chosen to spend their time with me. So many, in fact, that I struggle with how to allocate my limited time and waning energy to show the people in my life what they mean to me. I ponder why so many people are given no time to say goodbye and then some, like me, are given so much time to say goodbye. Despite this blessing, I have realized I’ll never be able to see and show all of those I love how much they mean to me. So, if you’re wondering, yes, I do love you, and I’m so sorry I haven’t had the time or energy to reply to that text, email or phone call. I am also fortunate to have worked in jobs that brought so much value and allowed me to spend my time fighting for things I believe in (and having one hell of a time while doing it). Four years ago a good friend approached me and told me about a river in Alaska (the Chuitna) where a coal company proposed to strip mine through 14 miles of salmon stream 300 feet deep to send coal overseas. He needed someone to do communications for that campaign and a few others. Jenny and I struggled with the choice. Alaska holds our nation’s last untouched wilderness; it’s the last place where you can stand in rivers filled with wild salmon, it’s one of the only places in the world you can catch a 30 inch rainbow trout whose ancestors swam in that same river millennia ago. It’s one of the few wilderness areas in the world we can protect before we ruin it and have to restore it. Should we move to Alaska, leaving behind family, friends, colleagues and a state that we love? It wasn’t an easy decision, but ever since my Mum was diagnosed and successfully fought cancer, my motto has been “life’s too short” and I’ve always tried to make decisions based off of whether I would regret them on my death bed. Together, Jenny and I decided that even if things went terribly wrong, we would always wonder if we should have gone to Alaska if we didn’t do it. We packed up our bags and headed North. Behind choosing to tell Jenny how I really felt about her (another story for another time) this turned out to be the best decision of my life. For the last four years I have poured my heart and soul into the fight to save the Chuitna River, a small river off the road system that you can only fly into. I have been humbled and honored to have the local residents let me into their world, open their doors, feed me their food, and show me unequaled hospitality. Like so many environmental campaigns I have fought, it was the people, not the river itself, that drove me to work long into the night, spend countless hours on conference calls, take red eye flights to DC, and manically pace around the office coming up with crazy plans and distracting my co-workers.
While an innate stubbornness keeps me from my deathbed for now, I can assure you that I have never, nor will ever, regret a second I spent fighting for the people whose life depends on that river. However, I must admit that I had a rather significant emotional breakdown last week realizing I would never see the campaign to its conclusion. Just like not having the time to see all of the people I love in this life, I realized I would leave this world not knowing if the sliver of contribution I made in the fight to save the Chuitna would come to a successful end. The news came early this week in text message with a one-sentence document attached: “The partners at PacRim Coal, LP have decided to suspend permitting efforts on the Chuitna Coal Project.” Wait, is this an April Fools Joke? This can’t be real. After more than a decade, could we really have won? Was PacRim Coal really backing down? It took hours to set in. Once it did I cried tears of joy thinking about President Al Goozmer and the Native Village of Tyonek who have lived off the fish and game the river provides for generations, and whose culture is synonymous with the river. I thought about my adopted Alaskan Grandparents, Judy and Larry, who spent the last decade fighting to save the river where they taught their grandchildren to fish. Thinking about my good friend Terry, and the days we’d spend drinking coffee and chatting on the beach looking over Cook Inlet and the Kenai Mountains as we waited for fish to hit his net. About all of the nights Ronnie made me laugh until my stomach hurt while his wife Bobbi shook her head quietly at his side. I cried thinking about how, at least for now, the Chuitna and places like it will provide people like me the chance to revert to childhood. To splash around in a stream full of fish, to throw rocks at other rocks for hours, and to get away from the offices, infrastructure, and screens that make us all take ourselves too seriously I cried tears of sorrow, wishing I could be with all of the people I worked alongside who had dedicated so much of their time, so much of their life, to protecting this place. I reminisced about all of the amazing memories -- the moonlit, starry night a fox joined us on the log as we ate dinner at the mouth of the river. All of the days getting trapped upriver by tides only to come back to camp dehydrated, exhausted and happy. All of the nights spent at Judy and Larry’s homestead sitting around the table eating smoked salmon dip on Chicken-in-a-biscuit crackers and bullshitting for hours. All of the mornings spent in the office eating breakfast burritos, throwing darts and cracking jokes as we schemed and dreamed of ways we could protect that river. Time moves slower at the Chuitna River, it is dependent on tides, weather and bush plane pilots. It is a spiritual place where I never failed to find peace. It is a place I will die happy knowing I did something, however small, to protect. When this stubborn old body reaches the mouth of the river of time, I want my family and friends to divide my ashes, take me on adventures and set me free in places I loved in life or places I never got to see but would love. I figure why should the adventure end with life? And when you do, I hope someone will spread some of my ashes in the Chuitna River. And when you do, don’t forget to bring a fishing rod, a snack, some extra water, and a good friend, but feel free to leave your watch behind. ### Tick Tock, Tick Tock Goes the clock In the stillness of the night. My heart beats faster And I wonder “am I spending These precious seconds right?” Like the waning snowbanks In the spring sunshine I know My time here is not long. Does the ice on the lake Contemplate its end? Does it know that come winter It will be back once again? With the hushed breath Of a blonde beauty in my bed And the soft whimpers of dog Dreams below, these questions Fade and peace begins to flow. After sitting alone, worrying in a dark, quiet veterinary emergency room last night, I started to panic when the vet finally walked down the hallway toward me at 5 am holding Birkie’s collar and leash, but without the dog.
Clearly noticing the WTF-happened-to-my-dog look I gave him, he said, “We lose things around here,” and handed them back to me. Sunday night, Birkie got into the food stash and ate enough to make her stomach about six times its normal size. She woke me up in the middle of the night gulping for air, retching, and had a look in her eyes saying, “Mom I made a big mistake and I don’t know what to do.” Sure enough, her stomach was so full of food that the vet worried it could rupture with any movement. She spent the day at the doggie hospital being monitored and getting IV fluids. When I was signing standard consent forms before I left her there for the day, the vet asked me if, should it become necessary, I wanted the team to perform emergency surgery or CPR on Birkie. I just looked up and thought, “I would spend literally a million dollars to keep this dog alive right now.” But, calmly (I think) said, “yes please” and went on with my day, which included going home for another hour of sleep and then taking an unusually uncomfortable and worried Sam to the clinic while they pumped him back up with blood and chemo. Since our last blog posts and the diagnosis, I continually think that I should be feeling way more existential than I have been instead of just going through the motions. Or maybe that I should have more profound conclusions about life and love, but I really don’t. So I’ll just update you all on a few things that are a little more straightforward. First, if you haven’t seen or spoken with him, I want everyone to know that Sam is doing and feeling much better than you probably think he is. Things are hard, and he feels pretty crappy at some point every day, but he is still up for seeing friends, eating, going on short walks, and cracking lots of utterly terrible jokes. Sam has a knack for telling stories in the longest, most detailed way. I notice this extra because I’ve heard most of his stories a dozen times, but I have savored the re-telling a little harder over the past few days of visits. Anyway, I don’t think we’ve given the impression that many of these things are possible for him right now, but they are! So while yes, there is a lot to worry and be sad and scared about, there are also things to be grateful for with getting to stay in a house together with Birkie and make homemade meals at the top of the list. (Thank you, Kate!!) Another thing to know is that we already left Seattle and are now in Madison, Wisconsin to visit family, see friends and experience the calming presence of Sam’s Madison doctor and the familiar faces of the nurses here. It’s great to be back in familiar territory and out of Seattle, which, unfortunately, is a place now synonymous with cancer. Our hope is to spend another couple weeks here while Sam gets a course of treatment designed to slow down the rate of the leukemia’s progress and then head back home to Alaska, which is where he wants to spend his final days. Which brings me to the less straightforward stuff to report. Truthfully, I’m still not sure what to say, but it’s so heavily on my mind that I have to mention it. It’s easy for me to get wrapped up in thinking about how long we have together, but Sam encourages me that now, more than ever, is the time to stop thinking about whatever is next and just make each day as good as it can be. In any circumstance, this is hard to do but it’s extra hard for me lately. I’ll be honest - I’m not as good at it as you’d think I’d be by now. I just can’t stop thinking about time. You know when you look back on certain periods in your life and they seem really happy or really sad, but also really short? As you can imagine, that shortness feels terrifying now. Somehow though, at the same time it feels very misleading. Because in between the special moments we’re supposed to be sharing and major conversations to be having, there are also normal ups and downs of day-to-day life that mess up all the picturesque stuff that’s supposed to be happening. (See also: Birke gorging herself on massive quantities of dog food and probably spending the next few days pooping as much as an elephant.) I think this obsession with time is probably common with life-ending circumstances, but grappling with it in any productive way is currently way beyond my emotional maturity level. The only good to come of the grappling so far is that I’m pretty sure the life-ending scenarios we’re dealing with flashed into my eyes at the vet yesterday morning and nothing more needed to be said about the importance of saving our dog. Then later, just before I wrote this post, I sat cross-legged on the couch next to Sam in front of the fire at Kate’s house, my knee resting on his lap. Happy to have her home and healthy, I was petting Birkie while Sam ate a bowl of oatmeal and we talked about the day. In that moment, I simultaneously felt so content, and also like I wished I could pause the frame and somehow retain the ability to hover above it and re-play it over and over for the rest of my life. I know that, “the time Birkie ate so much she almost blew up her stomach” is one of the stories Sam would tell and re-tell with too much detail over and over. It feels good that we are still getting to make those stories together. Last night a severely irritated eye, intense sinus pain, an uncontrollable tremor, and an itchy armpit infection kept me up until two in the morning. Then when the relief of sleep came, I shat my pants a little. It was one of the best nights I’ve had in a long time. It was great because for the first time in more than a month I was able to sit on a couch and watch TV with my parents, rub Birkie dog under her chin, sleep in bed with Jenny all night, and get up to make her brunch in the morning. It was great because for the first time in 36 days there weren’t nurses coming in to take my vitals, steal my blood for labs, then give it back through transfusions, waking me up at midnight, 4:00am, 5:00am, 5:15am and 7:00am. It was the first night I had freedom from a hospital bed, tubing and the incessant beeping of an IV pole. It was great because Jenny and I laughed so hard we cried as she read aloud the news article about the Canadian “Balloonatic” who strapped 100 industrial-sized balloons to a lawn chair and floated 4 kilometers above Calgary (#madrespect #carpethefuckindiem). Then we cried together for real as it was the first time we had the space to process what is happening and begin planning how we’d like to spend whatever time I have left.
A lot of people don’t quite know how to process the fact that a chance for curing my cancer has passed, and my time here is limited. I haven’t completely processed it myself but I have come to certain conclusions: First, I choose not to take the news as “I’m dying” but rather that I have a limited time to continue living and will do so with as much passion and gusto as my body allows. I’m still Sam, I still love making bad jokes and cracking people up, I still love getting outside and hearing the birds, breathing fresh air, making brunch and spending time with my friends and family (#Imstillhere #notdeadyet). Second, I choose to find humor in tragedy over anger or embarrassment. I could spare you all the details about accidental bowel movements or armpit infections and choose to hide them, but I find pooping my pants to be genuinely funny. I also hope that sharing these experiences make you all more comfortable to reach out to me and not fall into the, “they probably just want privacy and space at this time,” which I have been guilty of myself when friends are extremely ill. It should come as no surprise that these are hard times; but they are filled with heightened emotions across the spectrum. I choose to spend my time both to reminisce about some of the best of times in the past, and summon whatever strength I have to live life to the fullest and enjoy time with family and friends in the present. I may not have the opportunity to live a normal life span or grow old, but I feel as if I have squeezed a lifetime of adventure and happiness into the time I have been given. That is thanks to many of you who read this blog. I am grateful beyond words to each of you. Finally, speaking of great memories, I want to give a special shoutout to all of my friends in Talkeetna who skied the Oosik today and are undoubtedly having a great time right about now. This has always been one of my favorite weekends of the year and I’m with you all in spirit tonight. I'm so sorry to be the bearer of bad news, but we did not get the results we were all hoping for yesterday.
The chemo regimen was not successful in getting Sam into remission. Because of this and a few other complicating factors, the team of doctors at the big meeting yesterday decided he is not eligible for the bone marrow transplant as the procedure would likely "shorten his life," and due to his very aggressive form of AML, would be unlikely to work anyway. A couple of AML specialists are now investigating whether there are any clinical trial options that Sam could be eligible for, but we were told the chances of that are also unlikely. Head down and with a sigh, Dr. Masumi said without treatment, Sam has, "Weeks. Months, maybe." I have no idea what do to do or feel or say right now, but will keep you posted as we start to figure that out. In many ways, we're back to where we were in October, though now we know we have tried our hardest and have no regrets entering into the next phase of this horrible fucking disease. Today is our first full day in search of whatever is next and, just in case the worst is around the corner, a more concerted effort to re-tell and re-live the many, many happy stories and memories that made us into the couple we are today. Here are just a few of photos from the archives of some of the happiest times ever: Curtains drawn, I have been sitting in the dark of Sam's room getting some work done while he naps in between the usual nurse/doc traffic this morning. A very, very familiar scene. Through answering emails, my mind is racing somewhat with everything on deck this week in terms of treatment, so I thought maybe writing it all out would help me process and try to let it go and get on with my day.
So here it is: Monday: Today at 2pm PT, Sam will undergo a bone marrow biopsy where they drill into his hip bone and take a sample of the marrow to study it. The bone marrow is where blood cells and leukemia are born, so studying the bone marrow will tell us far sooner than a standard blood draw could if the last round of chemotherapy + that clinical trial drug were successful in getting Sam back into remission. Technically, remission is less than 5% blasts, but ideally he will have 0%. That's what the transplant doctors would prefer to see for him to move him forward with the bone marrow transplant. Since the biopsy procedure is sedated, he'll be pretty out of it for the rest of the day today and already told me to force him to walk for a few laps around the unit so as not to get too stiff and sore even though he won't want to. As soon as he's awake again, the anxious waiting for results with immense implications begins, and if I'm honest, the nerves will just steadily rise from this afternoon until we have results on Wednesday. Tuesday: Anxiety day #2. Sam's friend from high school is coming to visit and I have to leave Seattle for a presentation for work in the evening. So Phil gets to sub in for "operation distraction" at the hospital in the evening while I'm out for a few hours. Luckily, they are both story tellers at heart, and once sat in our garage talking until 5 in the morning because the garage door was closed and they couldn't tell how dark/early it had gotten. I'm so glad he's coming. Sometimes biopsy results come back within 24 hours, but I'll probably tell Sam's PA-C not to give him any results while I'm gone tomorrow evening, even if they're good. This way, if they're bad, I'll be sure to be there for him AND Sam will know that I've told her so he won't assume they're bad when she doesn't come. Plus, the results don't matter until the conference of attendings on Wednesday. Wednesday: A team of the attending transplant doctors will meet and discuss Sam on Wednesday at 10am. Our PA-C, Whitney, described that she'd present Sam's case and biopsy results, and then let "30 brilliant minds talk about it and duke it out." She said it's her favorite meeting of the week because it sometimes gets pretty heated with doctors arguing about enormously important treatment decisions. Whitney said she'd bring popcorn, and I told her I'd plan to picket the meeting and call Dr. Percival (aka Dr. Nobody-Is-Giving-Up-Here) and tell her to bring her boxing gloves. Kidding-not-kidding. There are a few ways this could go:
So, in summary, in between another "normal" work week, we'll be dealing with some life or death shit in terms of Sam's treatment and continuing to cope the only way we know how: by checking in with old/dear friends, through deep, intentional breathing and through being there for each other however and as much as we can. Recovery flows like a river. Sometimes it is slow and steady and it looks so nice that you want to throw an inner-tube on it and crack open a beer. But other times, it is rough and scary. It rushes and churns through dangerous canyons and you'd really rather be anywhere else that is more dry and firm.
Since the chemo + clinical trial regimen about ten days ago, Sam is doing better, but not better enough to get to be discharged from the hospital. Through some uncomfortable and disconcerting acute symptoms, he manages to grow more and more talkative, alert for longer portions of the day and has started to plug back into work. We're waiting for his blood counts to come back after the treatment he received, which is still likely well over a week away. While we wait, Sam is again in the danger-zone of having zero immune system. He has, once again, had a number of complications pop up, which he has conquered one by one or is still fighting right now. When the blood counts finally do show back up, the team will do a bone marrow biopsy to check to see if he is back in remission (aka check to ensure the leukemia didn't return with the good blood cells). If he's in remission, he's a step closer to his transplant. Slow and steady, the river flows on. If you want to send good vibes toward something specific, I'd send them toward Sam creating neutrophils (aka rebuilding an immune system) and having NO LEUKEMIA come back when the neuts show up. Everything hinges on those all-powerful white blood cells rushing back in! As I'm sure you can imagine, the recovery river is scary, and sad, and tiring. We are tired of treatment, but just literally f*cking TIRED from being woken up all night every night. And, as the bone marrow biopsy approaches so does our anxiety. We also deal with watching experiences we should be participating in go on without us and try to let them make us happy and determined instead of sad. On that note, we have had a number of close friends come to visit, and those visits have been uplifting and a bright spot to break up the slog of our treatment/hospital-life routine. In and around those visits, Sam and I have continued to laugh with and at each other, eat treats, watch movies, and go on walks arm-in-arm around the tiny loop on the hospital unit. So there is always good mixed in with the bad. Thanks for continuing to think of us and check in. If you need to find us, we'll be here in this room staying afloat on our river together. We're so far from 'plan A' or 'plan B' that I'm just calling this Plan S for "Plan Sam." A.K.A. the plan that finally works!
Before I get into the details, I'll start with the most important thing: Sam is feeling much better. We're still living in the hospital, but he's much more alert, eating more and we're spending our days binge watching "The People vs. OJ Simpson," instead of being really miserable and panicked. It's not ideal, but it's far better than last week, so we'll take it. Over a week ago, when Sam's doctors presented his case at the meeting with a number of other leukemia and transplant experts, the team they consulted with didn't have any new ideas. So, Dr. "No One Is Giving Up Here" and the attending at the hospital, Dr. Becker, forged ahead with one of the antibody studies they'd already investigated. While there were originally a few antibody study options on the table, they were forced to proceed with the one that would move forward the quickest since Sam's blast count was rising at a rate faster than OJ's white bronco. So that started last Wednesday. Plan S includes 6 days of chemotherapy and one day of an antibody treatment, which will be given on Tuesday, Feb. 21. This method is essentially a middle ground between only giving chemo, which wasn't an option due to toxicity, and only antibodies, which weren't an option due to the Graph vs. Host Disease (GVH). Today Sam's on day five of the chemo. So far, everything is going as planned. Like I said before, he is actually feeling better with the chemo drugs because they also knock back the symptoms of the GVH... which really says something about how miserable GVH is. After Tuesday, he'll have a break to recover where his blood counts are dangerously low again. They'll monitor him closely and we'll all do everything we can to get him into the damn transplant procedure as soon as humanly freaking possible. Anyway, I wanted to give you the update that we have 'Plan S' underway and so far, it is going well. No spoilers for how our T.V. show ends, ok? We can't wait to find out what the jury decides on OJ! (kidding) Holy schamoley, you guys.
Sam and I were blown away by the love you shared the last couple days. I think I may have said that in the past, but this is new. On Sunday, I wasn't sure if I was strong enough to endure this bs again. (And if I wasn't, how could Sam possibly be? I worried and worried about that.) But then, so many of you reached out. Sincerely, when someone says in earnest that they're sending good vibes or prayers, it's powerful. Like, almost tangibly powerful. I can't explain it. Well, actually, I can. Sam woke up today feeling a lot better than he had in a week. He keeps saying he had "vim" today. I really don't know what that means, but guessing based on onomatopoeia and the sheer number of poop jokes he made, I think it's a god thing! Sure, the drugs the team started yesterday could have had to do with it, but he's never responded to GVH drugs that fast, so I think it was YOU. Our friend Mindy keeps saying, "love is all there is," and this weekend, she was so right. Literally, love is all there was. Nothing else went right except for so. much. love. It was swirling all around us so densely that when we needed it, we could just reach up and grab some, and it was always there. Anyway, a common theme in talking to you and reading your messages today was that I freaked you all out pretty good with my last post. Things seemed bleak and scary. I'll admit, I was in a literally and figuratively dark place when I wrote it. I think the biggest problem was that I didn't mention any solution. So, I'm writing tonight to say that while yes, things are a little bleak and a lot scary, THERE IS A PLAN in formation. Aright, I guess that means there is no plan. But, THERE WILL BE A PLAN. More importantly, No One Is Giving Up Here. Like, not at all, even a little bit. Sam is still working toward a cure for this. He could have chosen to hang it up a long time ago and go on hospice. But he didn't. He's here to fight. I hate how cliche that term is, but unfortunately, we all know that "fighting" is probably the best way to describe it. Even though his body decided to take ten steps backwards last week, his spirit, thanks in part to you, ran 10 miles ahead. OK? OKAY? Ok. Glad we had this talk. To reassure all of you out there who love Sam that No One Is Giving Up Here, I thought I'd discuss what we've learned over the last few days about what might come next so that we all have something good to hope for and interesting to read about. Before I get too far into this, I have to say that I am no scientist, so think of this as your 30,000 foot overview of exciting new clinical trials* for curing cancer. To any scientists or doctors out there reading this: I'm truly sorry for all the ways I'm about to slaughter your medical vocabulary. Anyway. First, some background info. Chemotherapy has lifetime limits. The toxicity in your body builds up, and after so much, they worry that impact to your organs will outweigh any potential good that could come from chemo. Sam is at or very near those limits for a few classes of chemo drugs that they'd need to use to effectively knock back his leukemia again. Because of this, the team here in Seattle is exploring a few clinical trials to kill the leukemia** without heavy doses of chemo. So, we've been learning about these low or no-chemo clinical trials for getting him back into remission. Here's how I understand them: chemo targets and kills all rapidly dividing cells. This is effective at killing cancer, but it also kills a whole lot of good cells too, making your hair and nails fall out, impacting your organs, and making you feel like shit. About ten years ago however, scientists discovered that leukemia has its own stem cells, just like humans do. Within the last ten years, they've studied ways to use antibodies to effectively target and destroy just the rapidly dividing leukemia stem cells, and not all the other good cells. They're just now at a point of starting to test this on humans. Because they're not messing with as many good cells, apparently there are very low side effects to these antibody treatments. Some can even be done as outpatient procedures. There were four trials Sam was potentially eligible for on Thursday. Now that he's officially been diagnosed with GVH, he apparently could maybe still be eligible for two of them. I don't know about you, but this all sounds like a pretty brilliant idea to me. The scary part is that these trials are so new that there are no results yet about success rates, or even really side effects or useful things like that. It's fairly uncharted territory. But, when you are looking at uncharted territory or organ failure, the former sounds kinda good. Tomorrow, Sam's O.G. chemotherapy doctor (a.k.a. "Dr. No One Is Giving Up Here") is presenting Sam's case in a meeting of a whole bunch of doctors to discuss what the group thinks might be best for Sam. I'm happy this meeting is happening and will keep you posted. Thanks so much for being incessant cheerleaders, vibe senders, joke crackers, prayer warriors and love givers. We love you right back. *If you want a good opportunity to donate to this research, some of Sam's best friends from high school are skiing the 52k Birkebeiner Ski Race to raise money for Fred Hutch Cancer Research Center in honor of Sam. Here's the link to their page. ...Love. See? It's EVERYWHERE. **Reminder, the only option to CURE Sam's cancer at this point is a bone marrow transplant - a different kind of bone marrow transplant than last time. He can't just have chemo without a transplant because his form of cancer is so aggressive that even if it gets him into remission, it'll only be a matter of time until the cancer comes back. Not all cancers are like this: many people get into remission and never relapse. Unfortunately, that's not the case for Sam. (Exhibit a: this November he got into remission, and he relapsed already last week after only a little over two months.) Anyway, you cannot have active leukemia going into a bone marrow transplant, hence the effort to get him back into remission. again. Sam's leukemia is back again, putting his transplant and hopes for a cure back on hold. On top of that, today he was finally diagnosed with a resurgence of graph versus host disease after six days of round the clock vomiting and diarrhea. He was admitted to the hospital on Thursday evening for closer monitoring and to start IV nutrition to sustain his weakened body. He hasn't been able to keep more than a few bites of food down since Monday. In between incessant tests and trips to the bathroom and interruptions from doctors and nurses coming in to hang meds, he sleeps about 20 hours a day. We don't know yet how the GVH impacts the treatment options for the leukemia. Because he has two other viruses on top of the GVH, they won't let him leave his small hospital room even for a walk in the hallway.
The ~four hours a day he is awake, he's able to make jokes and talk, which is a gift. And, his "brother" Pete came to visit this weekend - also a gift. I'm so grateful for these two things and the constant, powerful love from all of you. But in regards to the rest, I'm actually speechless. For one of the first times in this whole cancer ordeal, I have no idea what to say. |
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