My mind has been racing since our consult appointment with the doctor from UPenn on Thursday. I have wanted to write, but can’t nail any one thought down at any point so that I can start. So with pardons to all ahead of the game, I’ll get us all started on this new chapter of our life called “Shit, Its Cancer-Now What?”
Snow, snow and more snow started our day, but we knew ahead of time that, at least insofar as getting our car on the road, we wouldn’t have a problem. Dear friends of ours, who have hearts as huge as can be, came over in the dark, before we were even up, cleaned our car off, and shoveled our car out of all that snow. Life made so much easier for us, and one less thing to be concerned with for that day! It was a fairly easy trip to the train station, short walk from the train station to the office in Philly. All good.
And then. Life changed. As it does. Our great anticipation was: doctor looks at the tumor, says “holy shit! and sets a date for surgery to remove that little bastard. How it happened: doctor looked at tumor, looked at MRI’s (which are almost negligible at this point, as the tumor has grown so much), possibly says “holy shit!” to self, but says to us chemo isn’t an option, won’t do any good. Radiation needs to start today, the cancer is very far advanced (at which point I say to myself “no shit!”), and if insurance won’t come on board immediately, then he’ll admit Handsome Husband to hospital, so treatment can start stat. Yes, its that bad. Its big, its ugly, getting bigger, getting uglier. The whole wrist is involved, side to side. It goes down deep into the wrist, the top of his arm is swollen, going up to the elbow. Already loss of movement in hand (small motor movement-grasping and such). Course of treatment, or battle plan, as I would call it: five weeks radiation, from slightly below the thumb area, up to maybe a couple inches below the elbow followed by 3-4 weeks off, as radiation continues to work followed by ONE week hospital stay for surgery. “WHAT?” I say to myself. The general gist of things: there is so little room to move on the wrist. Radiation will hopefully (yes, it will, I say), shrink the tumor, pull it away from nerves, tendons, etc, kill the tentacles of cancer that are reaching out from the ugly center of the tumor. Dr will have to beg, borrow and steal nerves, veins, whatever else is needed, from other parts of the body, including skin from Handsome’s back, (in order to create a flap, to cover what I imagine will be a gaping hole.) All of this, of course, needs to be watched carefully, to avoid infection blah, blah, blah…. Post operative occupational therapy-between radiation damage and what they are able to string together during surgery, where he is now with the use of his hand maybe where he will stay. Which isn’t too bad right now. Side effects from radiation are so individual. There maybe fatigue, maybe some, maybe none. The tumor is going to have the hell burned out of it, and there will be ulcers that will show themselves externally as the poisons surface. Just calling them ulcers and stopping there is manageable to me-realizing what that actually means is, yeah, different. Sores, and not pretty ones, dotting the landscape of his forearm. Yes, they will be covered, so that’s good. If all of this doesn’t work, or the cancer returns (10% chance of that happening, so good odds), then next step is amputation. Which, when you think of it, we’re lucky, because prior to 1989, amputation was the standard protocol when it came to this cancer…
By the time we went downstairs, across the street to the hospital, the powers-that-be had orchestrated things on the phone with insurance, and we had a consult with the oncological radiologist, and an intern. They spent time with us, explained and answered everything, and got Handsome Husband right in for the fitting and tattoo session for radiation. I wondered aloud to Husband if maybe the person doing the tattoo for him would be a burly, long bearded guy, (think Harley-Davidson), wearing a leather vest with ties in the front. Now that would make it an experience! (Such wasn’t the case-oh, well). As we sat in radiology, I looked at brochures for “cancer survivorship”, etc, and thought, “wow, never thought to be here!” Conversely, with cancer now in our lives, thank god we’re here. These peeps know their shit, and will help us.
The entire day was spent in Philly-there is so much more to tell-another few blogs! By the time we walked out of there, speaking for myself, I was overwhelmed, exhausted, done, done, done. The world of cancer. And so much to think about.
As a final word on this blog: Radiation starts on Monday, and, henceforth, the tumor is known as “Wilson”. Sense of humor is imperative, and, seriously, that damn tumor is big enough that it warrants its’ own name. (and, really, its’ own zip code) However, we don’t expect Wilson to be around for long…his demise is in the cards already…burn, baby, burn!