Who’s Running This Damn Show?!

Son Of A Bitch! Made it nearly 70 years then out of the blue got slapped with the cancer stick! Who’s in charge of this crap!

Melenoma?! But that can’t be! I’ve been keeping myself protected for 40 years! The last photo I have of me without a shirt, hat, or sunscreen (but, regrettably, with a 70’s porn-star mustache!),

• 

was me holding The Daughter in my arms while we peeked around a corner. And believe me, I haven’t been able to pick my daughter up and peek around a corner in a looong time! But they tell me that it’s the foibles of our childhood, spending the Michigan summers on the beach with all the cousins, and outside most days in between, regardless of season, sans shirt, hat, or any other form of protection we wouldn’t think of doing without nowadays, that lays the foundation. (and in my case, also my late 20’s working on projects out in the driveway, more naked than dressed - I could do that because I looked better back then - under the Texas sun.)  I’ve been informed that skin cancers can, if they want, lurk for years after the damage is done without poking their heads up.

 OK. This post has actually proven to be a difficult one to put together. I mean, some of this shit is pretty personal, and is it really relevant at all? And seriously, should I even be bothering anybody else with it in the first place?

Well, if I’m going to hang around here in the blogverse, maybe.

Whether I like it or not, cancer is a big part of my trip now. Like a grossly oversized, overweight, and really awkward bag I have to drag through the airport and try to tuck under the seat in front of me, because I’m sure as hell never going to be able to travel without it again! For me everything is either BC  (PC? Before Cancer, Pre-cancer? Why are all the good acronyms already taken?), or "now".

But I don’t want to be too dramatic about it here. After all, I’m fine for now. Maybe not quite BC fine, but pretty damn close. The chemo has torn up my melanin (structurally melanin is very close to melanoma so while killing off the melanoma much of my melanin fell victim too.) leaving my eyebrows so white they glow in the dark

and stripping much of the color out of my hands, which, between the left-over darker blotches, are nearly transparent now.

Beyond that I find myself putting a damp gaiter around my neck for heat-relief when it reaches the low 90’s, rather than the high 90’s of BC. I am back to doing my full BC workout, but my right arm aches under the weight of the handweights. I’m still just as productive in the mornings (I’m a morning person) but suspect that I’m slower and have less drive in the afternoons than I did BC, though several of those things might simply be age and wisdom and have nothing to do with the cancer.

Yes, getting from there to here was a bit rough at times. The first round of chemo had to be cut short after 4 sessions because I was dropping about two pounds a day and too debilitated to eat. So I ended up on such a high dose of steroids to reverse the chemo side effects that it took nearly two full months to get weaned back off of them by tapering the dosage back slowly. (apparently bad things happen if you just stop heavy steroids without tapering off.) Steroids are supposed to increase your appetite but that didn’t seem to be the case for me, much to the dismay of The Wife who is a serial food-enabler and likes her creatures plumped up, and while on the full dosage, the only time I slept for three weeks straight was an hour in my chair around mid-day after choking down a few bitefulls of lunch. I’ve got a slash down the middle of my back that a 10” bandage couldn’t quite cover and the “lazy S” incision (That’s an official designation by the way.) in my right armpit looks more like something Zorro did with enthusiasm after a couple flagons of mead. And there is so much of me missing under that armpit that my nipples point in two different directions, like a battered old car rattling down the road with cattywampus headlights.

But seriously, there were - are - a lot of people a whole lot sicker than I was over there at the cancer center.

So, cutting the dramatics off here, the easiest thing for me to do now is just fall back on the technical crap. Something I’m good at.

Here’s a listing of procedures,  and the number of times they were done to me in the past 26 months:

• 37 Blood draws
• 34 IV placements
• 28 Doctor visits (in their offices)
• 21 Video Consults with Dr.’s or their PA/NP’s
• 10 Abdominal/thorax CT scans
• 10 Brain MRI’s
• 9   Chemo sessions with just Opdivo
• 5   Ultrasounds
• 4   Chemo sessions with Opdivo & Yervoy
• 3   Needle biopsies
• 2   EKG’s
• 2   Surgeries
• 1   Scalpel biopsy (where they sliced a chunk out of  me)
• 1   Vena cava filter placement
• 1   Sclerotx treatment (An injection of a caustic solution to cauterize the lymph ducts that used to feed the 27 lymph nodes they removed from under my arm, in order to get that awful yellow-brown fluid to stop draining out the tube that was inside me for over a month afterwards.

Yeah – and all this shit is expensive. But you already knew that. Chemo sessions are about $30K each. A set of scans, CT&MRI, is about $50K, which, oddly enough, was about what the two surgery’s combined cost, including the hospital stay. A full blood workup is about $8k a pop. On the other hand consults, in-clinic or video, are less than $300.

But I have to say, from the money standpoint, working with a large organization like this particular cancer hospital has been a dream compared to the nightmares I have heard about.

Other than the initial dermatologist visit (A private practice not associated with the hospital) and those first labs he sent in, the only billing we have received personally is as we paid my annual Medicare deductible for the three calendar-years this has been going on.  Other than that our account has always showed $0 owed.

If there have been any fights over coverage for anything done it has been between the cancer center and Medicare or our Medigap carrier. Nothing has ever been delayed waiting approval, or denied altogether. (something my brother has recently experianced.) Every claim submitted, which happens in the background without us ever seeing them, has been paid the first time around.

Of course we have been paying the Medicare and Medigap premiums all along, but that’s just the cost of living, like paying property taxes and auto insurance. At the time, when we picked traditional Medicare over the HMO-like Medicare Advantage plans with all their fancy promises but seriously intrusive restrictions, and a big name Medigap carrier who we stuck with over the years instead of chasing lower premiums with startups during the annual open enrollment (Seriously! One year we were offered a less expensive plan with a brand new Medigap company a month before they even launched!), we thought we were being responsibly careful. And it turns out we were proven right.

Bottom line - costs to date, minus the last set of visits, scans, consults, and bloodwork from Apr/May which haven’t hit the system yet, and not including parking and toll fees, fuel, and embedded transportation costs. (It’s a long trip from our place to theirs, 4 to 6 hours round-trip depending on which facility, and the trips were frequent, so we ragged out one car to the point where the only moving it was doing was on the back of a tow-truck, and had to buy another):

• Total Paid               $936,962,55
• Medicare Paid       $889,842.09
• Medigap Paid           $46,348.64
• Out of pocket                $771.82

So that’s been my cancer journey so far.

Luckily for me, the chemo was very effective against my particular brand of Melanoma, and the surgeries were successful.

As of this last set of scans and checks in Apr/May, I’ve been switched from every 3 months (this stuff was pretty much weekly when all this first kicked off.  There were many weeks when we made more than one trip to the city, sometimes back-to-back, one day after another, for appointments and procedures.) to every 4 months for the oncologist, the surgeon (Who is listed as my primary care Dr. because she was the first one I saw when all this started), and scans, from 3 months to 6 months for the dermatologist, and annually for the cardiologist. The mental health and social services people are done with me (apparently I’m not interesting enough now that I've been classified.), so I have nothing scheduled with them anymore.