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.)
I want to keep you updated, but it has been hard to write lately. I’m not sure what to say except that it’s simply another difficult time. Not in that it’s the most intense or most painful or most anything. It’s just hard. I don’t have any nice stories to tell aside from recounting the long, uphill trudge that this round of treatment is turning out to be. Is it OK to just be honest about that? I hope so.
It’s not that we don’t have good moments or hours. Well, I do. I’m not convinced Sam ever really does. Everything seems hard for him, but he tolerates more than I can fathom. I’m just not sure the last time he truly "enjoyed” anything for a prolonged period of time.
Oh, actually, I do. Right before treatment started, two dear friends and colleagues (or salmon siblings, as we sometimes call each other) treated us to a nice dinner in Seattle. For a few hours, we forgot why we were down here and just ate amazing food and recollected our summer together. It was lovely.
Anyway. Updates. It's always slightly anti-climactic to update that Sam is back in the hospital when I failed to update that he was ever out of the hospital in the first place. But, Sam was released from the hospital last Thursday and was re-admitted on Monday. It's always nice to not be in the hospital, but it’s hard too. Again, Sam wasn't feeling well at all, and there aren’t the pain and anti-nausea meds available at the apartment that are easily accessible here. It’s hard to appreciate simple things about being “home,” like being able to sleep in the same bed together, when the pain from the drugs he’s on makes him groan in pain all night, and we have to wake up every 2-5 hours throughout the night to infuse IV drugs. Plus, at home I become his nurse instead of the many, many more skilled nurses here. That is hard too.
All that aside, last time he was in the hospital he developed these red, inflamed lesions all over his legs and arms. When we were at the apartment, they got much bigger and more painful and quite alarming to look at. Then Sunday morning when we woke up, I noticed his eyes were looking yellow, which is a sign of jaundice or liver problems. Chemo and many other drugs he's on are really hard on your liver. When we finally went in to get labs at the clinic, his bilirubin (the indicator of liver and gallbladder health) was at 8.8 mg/dL whereas a normal level is between 0.2 – 1.2 mg/dL. His doctor said she was "freaked out" about his gallbladder and sent us to the hospital. We were of course panicking that his liver was failing, and it made for a pretty awful day.
After seeing dermatology, infectious disease, GI specialists, getting four skin biopsies, an ultrasound and a cat scan, they're supposedly on their way to finding out what's going on, though we have no answers yet. One by one, they’ve come back into his room and stood in front of us to deliver the news that the tests have been inconclusive, and they don’t know what’s going on. Because of this, their plan is to maintain the broad treatment he’s already on. Meanwhile, he now has five spots on his lungs, as opposed to just one originally, the lesions on his arms and legs are getting bigger, and his liver levels are still too high (but at least not getting higher). He still doesn't have any immune system, and won't for at least another 5 days or so.
As always, uncertainty is the scariest part of all of this. When the focus of every day is getting Sam healthy and they’re not able to even diagnose the problems (not to mention TREAT the problems), time goes quite slowly. The doctors try to be reassuring that if we figure out what is causing the mysterious red spots on his skin and lungs, then they can adjust his meds to treat them… as long as the meds they need aren’t too hard on his liver, which is already struggling. And, we also have his bone marrow biopsy coming up next Monday, which will tell us if he is in remission and gets to move on toward the transplant or not. Assuming he is in remission, he can’t move onto the transplant with these lung infections. So the clock is ticking for them to get this under control.
So, it’s just a lot. And now it’s the holidays, and we’re back here in the hospital and that feels a little like insult to injury.
So what do you do? I think the answer is just spend time together, breathe a lot and very intentionally, walk laps around the unit together whenever Sam’s feeling up to it, hold hands and think optimistically about good times and happier holidays in years to come.
The transport team is coming in to take him to his next test right now. Maybe this’ll be the one we’ve been waiting for…
Wanted to give you all the quick update that Sam has stabilized a lot since my last post. His fever has come down thanks to a deluge of anti-biotics and anti-fungal meds. His symptoms aren't all taken care of yet, but his vitals have all been stable. He's even doing some work today.
We have lots of questions about when his remaining issues will resolve, when he can go back "home," and we're of course thinking ahead to the end of the month when we'll start thinking more seriously about remission and moving toward the next transplant.
But, we all have enough to worry about right now, so I wanted to ease your worries about Sam a little bit.
Sending out some of the extra love, strength and hope I have back into the world today. XO
Everyone in this country is on edge today.
We’re hopeful, scared, high anxiety, sad and inspired. All at the same time. I know we have all been reading amazing and terrifying stories, and I think it's safe to say that those of us who read probably more than what is good for us, are just feeling all the feelings.
But this blog isn’t about politics. It’s about cancer treatment, perseverance and hope. So, adding to election preoccupation, I’ll admit I’ve felt all these same feelings about Sam’s health since he was released from the hospital on Saturday afternoon when his inpatient chemo wrapped up.
Although we were “home” (a.k.a. not inpatient, but so far from home obviously) over the weekend, we got a heavy-handed reminder that cancer treatment doesn’t get weekends off. Sam just wasn’t feeling well. Low grade fever, no appetite, gut pain, sores on his hands and eyes from the chemo, no energy, the list goes on. When you have no immune system (literally, his white blood cell count is 0.0) these little things can be big things. We went into the clinic everyday over the weekend and what should have been one hour-long infusions of his last doses of chemo, turned into five hour “let’s deal with your symptoms as best we can and get you out of here and cross our fingers that things don’t blow up when you’re at home” sessions.
Meanwhile, Sam’s family has been incredible. They found an awesome apartment, and have made it feel homey. They distract us from treatment, take care of our dog, provide us meals and have dropped everything just to be here. It’s amazing. Thinking about their generosity of time and positivity and presence makes me cry.
Still, I thought it would be easier. I’m not sure why. I thought that since we “know how to do this now,” we could just turn auto-pilot back on and do it again. But seeing Sam so miserable never gets easier. And despite having literally the best support network in the world (I honestly mean that. I truly don’t think any couple has ever been more supported than we are), this process is lonely and hard.
Ok so all that. Plus the election has me on edge like whoa. (Yup, that’s the best description I can give at the moment.)
Then last night Sam spiked a fever of 101-point-something and we went into the ER around 2 am last night (this morning?). After a long night of tests we found ourselves back up in the hospital with a diagnosis of colitis and a potential diagnosis of fungal pneumonia (which I will someday learn to spell without spellcheck). They’ll do more tests throughout the day to figure it out for sure, and make the treatment plan.
So that all happened and I haven't slept more than 3 hours. Then this morning, I was talking to Sam’s Mom who could summarize my pre-election, mid-treatment anxiety so perfectly:
“My whole body is literally buzzing. I could probably jump start a car today with all the energy. You would just need to hook a pair of jumper cables to my ears.”
Anyway, once again we have a complete wait-and-see day. I don’t know how the country will vote, and I don’t know what’s next for Sam.
But I DO know that in both cases, I promise to just show up and to be present. Present for Sam. Present and involved with the political system. To give myself what I need to be present emotionally in both cases. I can’t control anything, but I can and will participate today and throughout the next administration.
For now, that commitment feels like enough. Because it has to be.
Plans are a somewhat loose term, but many of you have asked what's happening now and what'll happen next, so I thought I'd share what we know.
The hope is to get Sam to another transplant. Last time, he had a half-matched transplant and this time they'll pursue a cord blood transplant. In order to be eligible for this procedure, Sam's leukemia needs to be in remission (a.k.a. less than 5% "blasts" in his bone marrow). In 2015, after two rounds of chemo, the team in Wisconsin were unable to get Sam's aggressive form of leukemia into remission, but were able to proceed with the transplant anyway - knowing it would have a higher likelihood of relapse. Now that that's happened, going into transplant without being in remission is not an option. (Well, it could be. But it's a highly unlikely option.)
So here's "the plan" as of right now:
There you have it. "The Plan."