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… Comments are closed.
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