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.