A different kind of health update today. Long and rambling, and hopefully one that you can laugh at, if just a little. (Hang with me.)
Today's update begins about a month ago. It was then that we started noticing that Abi was losing weight. I say noticing because it seems to me that by the time we realized what we were seeing wasn't the normal day-to-day fluctuations, she had actually already lost 10 (or more) pounds. (I think Abi had noticed it before us, but she wasn't all that concerned.)
While this was happening, it now seems the nausea was growing more persistent. Recall that our girl had been through twenty(!) rounds of chemo by that point, and nausea is a chemo thing - had been since the beginning. It was really easy to chock up her upset stomach to a long chemo regimen. But with the benefit of hindsight, it was probably getting worse over time.
So much of this cancer battle has been just like this. After the initial diagnosis that changed everything in an instant, the journey has transformed into one of small, incremental changes. Small changes that hardly seem noteworthy until they're not small any more. Like when your mom notices how much grayer your hair has become since the last time she saw you. Like that.
In any event, Doctor McGaughey noted that she had lost some weight during last month's visit - the one prior to her initial immunotherapy treatment. He didn't seem all that concerned, either. He treated her, and we hoped the nausea would subside. It didn't. At least not much.
Fast forward to last week - in the days leading up to her second round of immunotherapy. Our girl isn't feeling great. And she's in the middle of this unnerving loop that runs like this:
- She's nauseaous all the time. And the woman who never, ever had a problem swallowing pills is having a very difficult time keeping her anti-nausea pills down. Please. Let the irony of that sink in. It's okay. We laugh at this a little, too. Including Abi.
- But she soldiers on, and keeps trying because...well, because Abi.
- And usually she'll follows up her anti-nausea pills with pain killers to allow her to sleep through the night - or at least for a few hours at a time.
- But anti-nausea pills, pain killers...they all come back up. And because too much time has passed since she took her pain killer, she can't repeat the dose for a few hours. Abi is stuck.
- So instead of sleeping (because she can't sleep because of the pain), Abi starts a sending snapchat stories to her family to chronicle what her sleepless evenings look like. Some of these are serious, like her description of the family compound she wants to build in the mountains outside of Charlottesville - all because she's found a 60 acre lot with a 100-year-old farm house that we could live in while building cabins that we could eventually rent to wine tourists - but mostly because she just wants to live closer to those she loves the most. Some are more topical, like her monologues on American Idol contestants (Abi was an early Maddie fan. Like Rainbow Connection or Brand New Key early, and had Maddie pegged to win L O N G before she slayed a version of Landslide.) Some of her snaps are hysterical. Like the series of shots of Abi getting comfortable in Bindi's bed - while Bindi was asleep in another room. This. Actually. Happened. (And I didn't take a screen shot. Sigh.)
- And while this cycle didn't repeat every night. It did repeat more frequently than any of us would have liked, no matter how much we enjoyed seeing a twenty-seven year-old woman curling up in memory foam dog bed.
We go to visit Dr. McGaughey last week, and we talk about weight loss and nausea, and Abi's inability to swallow pills.
No problem. Turns out there's a patch for that, and the doctor prescribes it for her. It's almost too good to be true. Because it is too good to be true.
As we're sitting in the treatment room, Abi receives a text from our local pharmacy letting her know that the drug isn't covered by the insurance company, and her out of pocket cost is going to be $2,400.
"Is that going to be okay? Would you like us to go ahead and fill that for you?"
And there's a little more to share. Later that day, we're on the phone with her insurance company explaining the cycle, and why none of the alternatives they're offering - all pills - are acceptable because she can't swallow friggin' pills, and why is this so hard to understand?
And the insurance representative, who's been very kind, very helpful, and also sounds like she's seventeen says to Abi (and I'm not making this up):
"I'm sorry for your inconvenience."
AND I'M READY TO GO OFF ON THIS YOUNG LADY AND EXPLAIN THAT INCONVENIENT IS FORGETTING WHERE YOU PUT YOUR CAR KEYS WHEN YOU'RE RUNNING LATE FOR A HAIRCUT APPOINTMENT OR WHEN SOMEBODY DOESN'T CHANGE THE TOILET PAPER ROLL AND YOU DON'T REALIZE IT UNTIL YOU NEED IT.
BUT WHEN YOU CAN'T EAT AND YOU CAN'T SLEEP AND YOU'RE IN CONTINUOUS PAIN, THAT'S SOMETHING ENTIRELY DIFFERENT THAN "INCONVENIENT."
Abi touches the mute button on the phone, and whispers to me, "Thank God that not everybody knows how to talk to somebody with stage IV cancer."
And this is vintage Abi, and why she's the actual best.
So why the nausea in the first place? The best theory, in my view, anyway, is that some of the disease is partially obstructing Abi's digestive system. We're hopeful that the immunotherapy may help in the coming weeks. If it doesn't work quickly enough - Dr. McGaughey says this is something that can be "spot-welded." (Treated with radiation, for the rest of us.)
In my view - I'm cautiously optimistic that things are getting better. It seems that Abi's appetite may be improving. She seems to be keeping food down better (not completely), and perhaps her weight is stabilizing. But it's truly a day-to-day thing.
So as you pray for our girl - here are our specifics:
- For continuing improvement in her appetite.
- For resolution of the anti-nausea patch payment (yep, still pending)
- That Abi's weight stabilizes.
- That the pain subsides.
- That our girl sleeps well.
- That the immunotherapy gives her system the boost it needs to eliminate the disease.