Raindrops Keep Falling on My Head.

7/18/18

As I'm writing this now, thinking about taking this picture yesterday at MGH during a thunderstorm, with Weezer's (excellent) remake of Toto's "Africa" playing, I find myself welling up a bit, hearing the lyrics differently this time (not that I knew them verbatim to begin with).

It's gonna take a lot to take me away from you There's nothing that a hundred men or more could ever do I bless the rains down in Africa Gonna take some time to do the things we never had

When I snapped this, Abby had just finished her first round of chemo with Vinorelbine (heretofore known as "Vanillabean"). She was having excruciating pain in her tumors, specifically the neck and ribs, due to the chemo. It was a side effect that they said might happen- technically it meant the chemo was going to the places it was supposed to. The actual drip of the chemo only took half an hour, but here we were, two hours later, trying to manage Abby's pain so she could feel well enough for us to actually leave. A nurse practitioner who we know well and like a lot was in the room figuring the meds out; I had already done what I could and we had just had a not-so-great caregiver/marriage moment, so at times like these I find it best to step away, just walk away Reneé. BTW, I just learned how to type an Accent Aigu on my Mac keyboard- my one accomplishment of the day so far.

Anyway, I watched the storms roll in and out. It was a fairly quiet day for chemo in general at MGH yesterday- normally the open areas, which seat 4 people at a time in sort of individualized sections, are mostly filled. It amazes me how many people are being affected by, and treated for cancer, every friggin' day. Everybody knows someone whether near and dear to them, or by association, who has had cancer. But when you're actually in the hospital in the cancer wing, it can be staggering how many people you see going through treatment, and I wonder what shit show he/she/they are having to go through. The elderly, the young (not kids here); couples and singles; black, white, brown- cancer does not discriminate based on color, or economic standing, especially when you're standing among all these people. I'm sure there are many social and class issues that affect who gets cancer more and who's more likely to receive the care and services that they need. But I'm talking more like, just look around at your surroundings- these people are all suffering to one degree or another, and it just sucks. that's it- no arguing that, no mincing of words.

So I digressed a bit, and just to backtrack a couple of days to what led us to where we are, and why we're on this new regimen. Essentially, we were trying to get on a drug called "Tagriso". The long and short of it was that it was denied by insurance twice, and has now been bumped up to a formal appeals process, which can take a week or two. Tagrisso has only been FDA approved for lung cancer, not esophageal cancer, despite the fact that one of our (3) oncologists found a case where a man has been helped by Tagrisso who's gene mutation was similar to Abby's. But insurance being what it is, they aren't in the business to follow their hearts, just their pocketbooks. And honestly, we have no idea if Tagrisso would help Abby anymore than the Vanillabean chemo she just started on. The only other thing to hang our hat on though was that our close friend Nila, who has been fighting the fight for way too many years, praises Tagrisso for saving her life. A pretty strong testimony, and we've seen it first hand. Yes, she has lung cancer (never smoked a day in her life- wtf), but her gene mutation isn't that different from Abby's. It could still get approved, but we decided over last weekend that if wasn't approved, then the Universe had decided for us, and we'd proceed with the Vanillabean, and could always do Tagrisso after/down the road. And also, Vanillabean was recommenced by the Director of Esophageal and Thoracic Cancers at Dana Farber, so it's not like it doesn't have any street or doctor cred behind it.

Abby will be doing her new chemo 2 weeks on, one week off, for the next 6 weeks or so, then will get new scans, and the finger crossing begins anew. The Vanillabean's side effects should diminish, or so we've been told, as she continues treatment, and ultimately, hopefully, it will help with the pain, and shrink the tumors. The meds can only do so much; it's the chemo/immunotherapy/what-have-you cocktail that has to be the THINGg that brings hope and long-term wellness.

I can't tell you that the last week has been easy- it's very hard to watch someone you love be in pain and you can't do much but exist and dole out meds and be there. Or in some cases, not be there because they need and want their space. I thank the film and TV gods for cable and NETFLIX and an abundance of quality shows. Like Abby, I find my concentration levels to be in short supply, so I've given up, for now trying to finish the book I started last fall, and will relegate myself to magazines, my Globe subscription, the 'Net, and finding new stuff to keep my students, and myself, engaged for my Fall classes. There are a lot of movies/shows that are off my list, at least temporarily for the same reason - lack of concentration. If anybody remembers "Kentucky Fried Movie", which probably is in the top ten for political incorrectness, but is still one of my favorite inappropriate sketch comedy movies, I always remember this line from the Kung Fu parody sketch "A Fistful of Yen":

Loo: What was that? This is not a chawade. We need total concentwation.

Yes, sorry, it's said with an unidentifiable racist Asian accent. And they make fun of just about every stereotype imaginable. Other sketches that I can remember were:

• Catholic High School Girls in Trouble

• Household Odors

• Cleopatra Schwartz

• Zinc Oxide and You

• The Wonderful World of Sex (featuring Big Jim Slade)

I saw it at the drive-in: it was a double-feature with Woody Allen's "Everything You Always Wanted to Know About Sex But Were Afraid to Ask" (also a wickedly funny/stupid sketch parody). Unfortunately, don't know if I could watch WA's movies anymore in light of everything that's gone on. But I am going to find Kentucky Fried Movie and re-watch it- it's been years. I have no doubt that half of it may be as bad and as unfunny as an SNL skit that goes on way too long. But it was a John Landis' directed Zucker Bros. written film, before "Airplane" I believe. And you get to see Chevy Chases' fingers walking along in a Yellow Pages Book parody commercial, that well, I won't spoil where those fingers do the walking to...

Back to the Future reality: despite the past week, we again, remain hopeful. It's not easy, and much easier for me to say, as I'm not the one in physical pain (we can just leave emotional pain out of the equation for now). I can't say that it's not challenging, trying to stay positive, especially as I watch Abby falling asleep sitting up because it hurts too much to recline. Actually, she's mastered the art of falling asleep sitting up in bed- it's a little weird to get used to; actually really weird to get used to, but as long as she's safe, doesn't topple over (she never does), I've become accustomed to letting her "be", and "be" comfortable if that's what it takes. There's a lot of going with the flow I've found, in order to navigate the Cancer waters. It's a lot easier sailing with the wind than against it, for sure. Our boat remains watertight and still pointed ahead, sails close-hauled as it always feels like we're just on the edge of the wind, fine-tuning as we need to, as we continue our voyage. Shit- how many metaphors can one man jam into a paragraph without breaking an editorial sweat? Guess I will have to let you know. An entire blog written in metaphors- there's a future post in there somewhere.

Much love as always,

Abby, Craig, Ben and Aliza