Monday, September 10, 2018
How to move seamlessly (?) from one deadly disease to another - or - What the F@CK?????????
Good Grief. So, I had my "annual" neck, chest, abdomen, and pelvis CT's with MRI of the brain and lab work on Monday, 8/27. It went way too easy. No fighting with Blue Cross Blue Shield. No problems, other than the most ridiculously surly, know nothing, lab tech evah and an icky hair in my late breakfast.... But, we'll pause there for a minute to note this:
Link to my last update: 9/2/2017 - 14 years in Melanoma World...
Here's the new me:
180 months (15 YEARS!!!!) post my original melanoma diagnosis in 2003 at the age of 39
100 months Stage IV (more than 8 years!!!)
94 months NED (well....for melanoma at least)
92 months after starting nivo (Opdivo)
62 months (more than 5 years) AFTER my last nivo infusion in June 2013.
Sounds pretty damn super fantastically fabulous, no?? But, while driving home from my scans, per my last post ~ Live chaotically!!! - Refashion - #2 - and a buried lead from weird, wacky, melanoma world!!!! ~ I got a call from my local oncologist telling me crazy mess about my appendix. So...
I saw my surgeon 8/28 ~ cause everybody has oncs and surgeons with whom they have long and varied histories in their life, right??? ~ I mean, I'm really lucky I do, but still! He wasn't too alarmed by the CT report, but given my history felt the appendix should come out. Simple lappy appy. How hard can that be? And because he is awesome and didn't want things to wait too long, as we have (had) a long dreamed of, planned out, and saved for - trip to Italy that starts 9/23, he scheduled the surgery for Thursday (8/30).
About an hour into what should have been a short, outpatient procedure, B gets a visit from the surgeon and pathologist. Poor, sweetie. Turns out, I have a path in my pocket, too. Same dear soul that had to break it to Brent that the path report on my sentinel lymph node back in 2003 WAS in fact, melanoma, despite the fact that his partner had said it was negative. The tie was broken by Mihm at Harvard and Ox was right. What a dear man ~ to tell his friend, B, the truth, even when it contradicts his peer and is the last thing his friend wants to hear. Well, don't say lightening can't strike twice, at least if you're Ox! He's out in a chamber off the surgery waiting room, along with the surgeon, telling B that the 10.5 cm mass in my appendix is not melanoma, rather it is a rarer than rare adenocarcinoma ex-goblet cell carcinoid. Whatever the hell that is???!!!! But, they needed B to decide what to do. Close me up? Take out the ascending colon including the ileocecal valve (the valve that keeps the poo in your large intestine [colon] from flowing back into your small intestine - seems like I need that!!!!) as that is the "standard surgery" for this sucky cancer that nobody knows much about???? And, the gall bladder looks really bad and should probably come out, especially since, if this other surgery is done, removing it later will be difficult with subsequent scar tissue etc., etc.??? What to do? I know that had to be very hard for B to answer. But, knowing I'm a get-her-done kind of girl...he gave the go ahead for all of the above.
Gotta say, that was a hell of an epiphany to wake up to, which, sleuth that I am, quickly deduced on my own in the recovery room when I finally managed to peel open an eyeball, get some focus in it, find a clock, and determine that my little appy had gone more than 4 hours. Shit! I gained some confirmation by my post op nurse who didn't wanna talk about it!!!
I know that so many of my melanoma peeps have probably been through far more gruesome things, but I will say that the past 12 days have been a nightmare of putrescence, pain and horror. If there was something that could go badly, it did. Incredibly bad reaction with dyskinesia (horrible jerking movements you can't control...happening most when trying to sleep) to phenergan and zofran (meds to keep you from vomiting)? Check. Vomiting horrible green slime anyway? Check. Developing an ileus (where at least one part of the intestine won't wake up and function)? Check. NG tube to suction? OMG!! Check. Ileus not improving so surgeon worried about small bowel obstruction, leading to repeated X-rays and then a CT scan before which the contrast had to be injected via the NGT, into a stomach that did not want it? Check. Heparin injections? Not that big a deal, right. Well, usually they are given in the abdomen, but not when you've had abdominal surgery. So, to quote a nurse, "We'll just use your thighs since that is an unaffected part of your body." Wrong. Having a zillion hard as marbles granulomas throughout my upper thighs, secondary to the peptide vaccines I was given in my trial, turned even that into a bit of a disaster. I was in hospital only 3 days (having been told I could spend weeks in ICU) when the right upper lobe of my lung was removed!! This mess turned into an 11 day hospital stay, having just gotten home last night. About 6 sleepless days/nights in, B called in the troops. My sweet dear Ruthie came up and they took turns doing night shift. I don't know what we would have done without her. She and B had it down to a science. IV here. D/C NG from suction there. Pull her to the bathroom. Pillows here and here. B would rub my back as I pooped foulness. Despite 30 years of the closest marriage two people can have and despite the poor man having held my vomiting head more times than can be counted...pee and poop was not a shared ta-dah. Til now. Ruth gave my trembling stinky ass baths when she could...literally saving my life and sanity. The kids and dear Don came up to try to entertain and provide support. Melanoma peeps and dear ones everywhere have sent dear sweet messages of care and love. Cancer really kicks everyone who cares remotely about you - straight in the teeth. I am lucky to have such amazing folks in my life. But it breaks my heart to not only feel their hurt, but be the cause of all their suffering.
On the good side, there was no melanoma in my bits and bobs. As far as my adenocarcinoma ex-goblet cell carcinoid, there were clear margins and all nodes were negative. On the down side apart from its existence period, the cells were multiplying rapidly and my type is one of the most aggressive for "seeding" to the abdomen among the small number of tumor types in this category of crap. The surgeon reports that the abdominal surface looked fine as best as he could tell by the naked eye - which is good. There may (or may not) be scans that try to determine a clearer answer to that. There is much that we do not know. Dear Ox did a ton of research for us. My donkey is well on his way. There may be a specialist we will see in Nashville at Vanderbilt. We will be talking to the Wizard Weber and see if he has any wisdom or advice. Not exactly his bailiwick.
I am sad. Stripped. Broken. We are not going to Italy. I cannot lift my bags and hop on and off the trains we were planning to take up and down Tuscany - from Rome, to Siena, to Cinque Terre, to Florence and back to Rome as we had planned. I cannot hike from Vernazza to Riomaggiore to Corniglia as we planned. There will be no sweeping views with my baby. No Sistine Chapel. No Apian Way. No cacio e pepe. No holding hands and smiling at each other in the chaos of a foreign city.
On an ironic note, I have been working out with Rose for months. Running better than ever. Had the narcissistic thought to take an ab selfie a week or so ago as I had abs that Channing would have been (fairly) proud of. While today the best I can tell you is I have lost 10 pounds, but look as though I am 6 months pregnant. My abs, however, are certainly ripped.
People have asked, "Would it have been better to be melanoma?" An incredibly strange and horrifying question we had already been asking ourselves. I have no idea what my answer is. I have no idea what my answer is to anything. Except, this really, really sucks. I don't know if I can go through this shit again.
Thanks for all the love. I will try to become me again - someday. ~ love, les