1/7/18
Well, it’s your friendly neighborhood slacker-of-a-husband here, finally catching up with you all in 2018. Since I just hung the phone a bit ago with our favorite ambulance company, discussing (again, again, again) bills going back to July of 2017 that are still unpaid (not their fault, insurance co.- shock! dismay! oh the humanity!), I figured you all could use some humor/outrage/plain old rage to either a) start your morning off with to accompany your java/tea/newsfeed bile; b) start your midday lunch break/siesta/5 o'clock-watching, or c) start your evening drinking/eating binge since you are only 239 lbs. and are not obese, so you can still gain another 9.999/10th of a pound and be in the clear. So says THE OFFICIAL doctor of all that’s crazy.
I think I have passed a milestone, in that I have actually spent more time on the phone with the ambulance company, insurance company, and now attorney/collection agency, than Abby Trotter Grant and I actually spent inside ambulances. And, we spent a lot of time inside ambulances. A lot. We still get recognized at hospitals by EMTs, being the minor celebrities that we have become, high-fiving our ways through the hallways. OK, minor exaggeration, but we really have been recognized on several occasions. Super nice people. So the long story short, that still continues, is that all the ambulance bills were originally considered “out-of-network” by the insurance company, because they weren’t an approved provider at any of the hospitals we went to. When the insurance company finally realized that we never had a choice but to use our ambulance company, because THEIR provider didn’t actually service any of the hospitals we went to (I guess MGH is too low rent?) they said they needed to be re-processed as “in-network”. OK- fine, have at it, throw a party- I don’t care, just get it done. Then some bills got paid. About half. Maybe. But they also sent us checks out of the blue, with no explanation, one of which we never even received nor cashed. Actually, I never cashed any of the them, since I didn’t know what the hell they were for. Even after calling, they were confused. Why did they pay the ambulance company directly for some bills, but not others. Do UFOs exist? Sasquatch? Loch Ness? No one knows for sure. I want to believe Agent Mulder, I really do. But how can an insurance company not know? The truth is out there, but I don’t think I will ever find it. I know I said this is the short version, so… bills are still outstanding back to July; I have calls in to two different insurance people, one of whom gave me their cell (no call backs yet), and I have open dialogues with the ambulance company and collection agency. I love all my new friends- I feel so wanted. Maybe more like WANTED. Just put me on the wall in the Post Office - I’m ok with that.
So I’m pretty sure I mentioned previously that Abby started an esophogeal cancer clinical trial at MGH/Boston, with Keytruda being the new drug she’s getting every 3 weeks via infusion through her port. So no chemo/radiation for the foreseeable future, which we’re pretty happy about. So far, the worst side effect has been tiredness, as it wipes her out for a few/many days after. Big CT scan the end of January should hopefully show if Keytruda’s working as they hoped. If it is, she can stay on it indefinitely. If not, well then plan “B". Whatever “B" will B will B. But the docs seem very positive that we will see good results. The CT scan will also help show how Abby’s vocal cords look, which in turn will help direct the way her speech therapy is handled- right now one of her vocal chords remain paralyzed- result of the tumor/radiation- not an uncommon occurrence, and something that is reversible if all goes according to plan. My brother had a vocal chord that was paralyzed- results of chemo, but now it’s 97% fine. So, good to know. And if you know Abby, she’ll want that vocal chord in a-one condition so it can withstand some really good audible “workouts”.
On other medical-related fun news, I continue to try and get Abby a much more advanced, smaller, and heated humidifier to use. It keeps her tracheostomy/tube moist, via a flexible tube that ends in a mask, that goes around her neck and over the tube. The one we have now works; but it sounds like a jackhammer, is bigger than a breadbox, and only blows cool air- not too comfortable or soothing in the winter months. We were told about a great, small, heated machine, that is also portable, back in September. Have been trying ever since to get our hands on one. They’re about as available as finding the missing Isabella Stewart Gardner paintings. The comedy of errors, or horrors as the case may be, run long, and the phone calls, emails, snail mails add up to a mountain of crap. I envision it like the top of Mt. Everest, which I’ve read has so much trash to haul down that they have to use helicopters, and fine climbers who don’t return with their trash, and Sherpas get paid by the kilo for what they haul down. Next time I do my business cards, I think I will add “Sherpa- hauler of crap” to my title.
I can now say, unequivocally, that I could drive to CVS with my eyes closed, since I have been there every single day since last Tuesday- 6 days in a row if you’re counting- I refuse to go today, because you know, it’s the 7th day, and I’m resting. Even though there’s a scrip there waiting. But it’s mine, and it can wait until tomorrow. You may be wondering “Craig, why do you need to go there everyday- does Abby really have that many medications?” Well, kind reader, she does not, but thanks for asking. She really only has a couple scrips, and some over the counter stuff. And it’s not because I have a need for one can of cat or dog food, emergency toilet paper, gum, or a tongue scraper (yes, I’ve seen them there before). It’s because of a laugh-aloud insurance system coupled with a huge pharmacy chain who is usually understaffed, that has a phone system guaranteed to aggravate, and a “please hold for the next available pharmacist” message that now has crept into my sleep patterns, jarring me awake at night and triggering a Pavlovian response that causes me to reach for my phone and take it off speakerphone, which of course, is not on to begin with. Essentially, this is (mostly) a result of us having to change health insurance as of 1/1/18. Didn’t want to in the worst way, but we were going to have to go on COBRA, basically doubling our premiums. Luckily, since I’ve been teaching 2 classes a semester at Emerson and have been there 13 years, I’m eligible for a 50/50 split on health insurance. Now, as far CVS goes, I tried to fill Abby’s OXY scrip (for her throat/more, pain) as I normally do and it was all hunky dory. Until it wasn’t when I went to pick it up (was told it was ready). Found out they only can approve a new scrip involving an opioid for 200ml- federal of state law- not sure. OK- I get it- it’s a crisis. So they said “Come back tomorrow" and then can refill the rest. Fine- and now I know the drill that when it comes to any opioid, even if they only fill a partial amount, even a friggin’ teaspoonful, you have to get a whole new scrip for the balance. And they can’t call it in- you have to physically pick it up, show your license. And stand on one leg, repeat the alphabet backwards, walk the straight line, cry if you want to, and then go sit in your car and off ‘ya go back to the pharmacy. Well I did that, went and did an errand, was told it was ready, came back, and was told “no, there’s a problem”. See, the insurance company in all their brilliance, decides how much Abby (or anyone I suppose) can get, never mind that her doctor has been prescribing the same dose/amounts for 5 months now. No, some corporate wonk looks at the scrip and goes “well, she must be really partying it up, that cancer patient there, but not on my watch she doesn’t”. And you know, it’s a Friday of a long weekend, and the amount of OXY Abby has will never last until the following Tuesday. And I suppose I could go house-to-house, canvassing my neighborhood, with pleas of "Cup of sugar and some OXY please”. So every day, I went back to CVS. Because they won’t discuss this shit over the phone, btw- you have to go and represent. Finally, Abby’s doctor’s office got through to someone, somehow, and made it happen. But still, it was one more visit, only to arrive and find there was “another problem” that needed to be solved. By now I’m sure this has gotten as tedious to read about as it was to live it, so I apologize that there’s not some Jason Bourne action stuff that I can weave into this story, though I did manage to evade being spotted by “that person you don’t want to talk to now” by ducking down a Christmas clearance aisle and hiding behind a sad looking snowman wire-lawn-sculpture that was somewhat twisted and misshapen, kind of how I was feeling, having to be hiding out in the clearance aisle at CVS.
Abby has also started speech therapy, at Spaulding in Salem (new, and very convenient) which is once a week. It’s pretty amazing what goes into the hour of exercises during the session, and what she has to do at home. Essentially, she has to start to retraining her tongue and throat muscles, and muscles I didn’t even know about, even though she doesn’t have the ability to speak yet, and one of her vocals chords (everyone has two) is paralyzed (I mentioned before I think?) from the tumor (but should recover). The speech therapist is an awesome, kind, funny woman. Aliza Grant, who is studying communication disorders at Emerson, tagged along for the first session, since she was home on break, and has since followed up about coming during the summer when she’s off to observe the kids who get speech therapy there (in another area), and the therapist has been awesome with her, discussing her courses, and making things happen so Aliza can have observation hours. Nothing like a little networking- never know when you’re going to get these opportunities.
The CT scan Abby will have at the end of the month will show what position her vocal chord is in now, and whether or not it will allow her to be able to talk through her trache tube. Long term (hopefully not too long) plan is to get the damn tube out, (out damn tube, out) so she can eventually speak, and eat, like she did before. Still a ways to go, but if the scans are good, and the Keytruda trial drug is working, it will go a long way in letting us know when the tube might become just a nightmare from some past B-grade horror flick. Can’t express to you all how much she, we, want that to happen. But as I’ve mentioned before, you can’t look too far ahead, down that long and winding, pothole-filled road, that can lead to WTF land if you do.
Ben Grant came home for a quick visit over the weekend, since he basically said he would be filming the entire month of February and we wouldn't see him for basically a year, or March, whichever comes first. His thesis project is that he's filming other people's film thesis projects, if that makes sense. So between that, and his paying-the-rent gigs, he's one hard-working boy. He's so checked out mentally from school- wants to be working and plying his craft (but get that degree son so you can hang it in a place of honor in the bathroom). LA is probably in his future, but see previous paragraph re: that long and winding road.
So we will continue the good fight. My list of calls for my personal groundhog day will start anew when I’m done with this post. The pile of bills, insurance “approvals” and “denials”, and others sit cozily alongside me. They might get ignored today. Maybe I’ll give them a little pat to acknowledge them in case they feel neglected. But nothing moves fast in my brave new world. It all feels very constipated (sorry for the analogy- just being anal about it). And I know I’ll eventually have to figure out how to work some more, beyond my teaching and bit of freelance. Not that I don’t have enough to do, but you can only be charity cases for so long. I’ll reassess after Abby’s CT scans. We’ll figure it out, like we always do. That’s something Abby has said to me, and me to her, (more her to me, as she has always been the optimist in the family, though I’m learning) for many, many years, and guess what- we always do. Not saying it’s easy, or the outcome is always desirable at times, but I guess whoever promised that life would be easy, or life could be a dream, (sh-boom, sh-boom- thank you The Coasters, I guess you did). But no Debbie Downer here; still feel extremely fortunate for all of the good things that have happened, and for all the good people around us. When life gives you lemons, you get out the cutting board, and make a Tito’s and soda, and just chill. And some days, you just need to fill the glass again, because you don’t want that glass to be half-full.
Much love to all.
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