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.