LONG ONE: IF YOU JUST WANT STRAIGHT-UP NEXT STEPS INFO, SKIP ALL THE WAY DOWN TO WHERE IT SAYS: “So there you have it – here’s where I’m at right now:”)
PARENTAL WARNING: the following contains frequent use of BAD MOVIE QUOTES and CHEESY SPORTS METAPHORS, occasional use of FOUL LANGUAGE, and a single reference to BUTT IMPLANTS (but if you can make it through all of that, there’s some actual info towards the end)
Okay – no need to recap what went down over the 24 hours between Friday afternoon and Saturday afternoon, other than to say, in movie terms, it was a cross between Brian’s Song and The Texas Chainsaw Massacre. By Saturday afternoon, although we we’re still on an emotional rollercoaster, we were starting to get our legs back under us – all 6 of us piled into the car, windows down, listening to music, drinking Starbucks, just acting stupid, like we do. And then something happened.
C’s driving, and I’m in the passenger seat, texting back and forth with a good buddy of mine from high school. And at some point, I text something along the lines of: You know, I can take a lot, but I can’t take being told I don’t even get a shot at beating this thing. So, we keep driving around, and I keep thinking about those words. And the more I think about them, quite frankly the more pissed I get. This is something I’ve really tried to avoid over the past six weeks. I’ve said it, and I’ve meant it: there is no room for feeling sorry for ourselves, resentment, regret, negativity – none of that stuff; that’s all wasted time and wasted energy, and right now we can’t afford any of it. Now, for those of you who know me well, you know I’m not exactly built this way – I am not known for my uber-positive, transcendental nature. I talk a good game, but I suck at meditation, yoga kills my knees, and as much as I love a nice sunset, I find it hard to just sit and stare at one. Some of you might even say I thrive on challenge, struggle, even conflict. Guilty as charged, I suppose. Well, let’s just say, I got in touch with my inner Joe Saturday after sending that text. I am pissed. F*** this cancer. I can take a lot. But I really can’t take being told I don’t even get a shot at coming out the other side of it. In fact … I don’t accept that. Nope. I flat out don’t accept that. To quote Paulie (Rocky’s brother-in-law), when Rocky’s letting Clubber Lang land shots at will: “He’s not gettin’ killed. He’s getting’ mad!” Or, if Dirty Dancing’s more your speed: “Nobody puts Baby in a corner.” (wait, am I Baby in that one, or Patrick Swayze? – never mind). The point is, although I fully recognize the odds say I’m gonna get my ass kicked, I don’t accept that my fate is sealed, and the only remaining question is the timeline. My fate and my time are between God and I. I’ll accept His plan as it unfolds, but in the meantime, I’m gonna “go hard to the whistle” (couldn’t resist throwing that classic in for all my fellow coaching buddies!).
Now, speaking of God, a funny thing has happened. I spent all last week waiting for a phone call that was supposed to tell me if I get to be alive for a long time, or not so much. No surprise, the weight of that was quite heavy, and I prayed a lot. On Friday, when I knew the call was imminent, I drove to Franklin Park and sat in front of the football fields waiting (I didn’t want to take the call with C and the kids around). I sat there by myself for two hours. I kept praying. And praying. I had a two-column list of questions for the doctor scribbled on a sheet of paper. One column of questions for if I got good news. The other column of questions for if I got bad news. Well, we know what happened from there. The phone finally rang, and I picked up. Ten seconds into the call, the doctor said the word, “unfortunately,” and that was it. I just drew a big X through the good news column and moved on to asking my bad news questions. Now, fast-forward to Sunday. By then I’m in full fight mode. So much so, that I’m walking around the house, telling everyone I’m gonna make thymoma my bee-atch, rebrand it thyjoema, trademark it, and start my own clothing line. A little later, I’m on a solo walk in the neighborhood, and I’m back to praying. I’m having a serious, full-on, open conversation with God, trying to reconcile this newly-energized fighting attitude with my authentic willingness to accept whatever He has planned for me. And something rang through, loud and clear. I realized in all the praying I’d done the previous week, I’d been focused so hard on accepting whatever lay ahead with grace, that I forgot who I am – how I was made. There have been a lot of highs and lows on this “faith walk” I’ve been on the past six weeks or so. Many moments where I’ve never felt closer to God in my life, and a few where I must admit, in full disclosure, I’ve felt very alone. But at that moment, on that walk, I felt perfectly aligned with Him. The fight is part of the plan. He and I are in it together, and it’s game on.
For those of you who’ve stuck around, now starts the update. A lot of you who read my last post reached out with a simple question: why can’t they do surgery on the chest tumors? Believe me, I can dig it. Nobody can “undo” the fact the cancer jumped ship into my bloodstream and has, unfortunately (man I’m sick of that word), been coursing through my body, resulting in at least the cancerous nodules in my lungs. And nobody can change the fact the chemo they use to fight this type of cancer is, at best, a journey-man quarterback – hence the “odds say I’m gonna get my ass kicked” line above. But the softball, or DMD bottle, or old shoe (take your pick) crammed beneath by sternum and between my lungs is most likely the cause of most of my symptoms: trouble breathing, pain, cough, trouble swallowing, etc. And, unlike almost ALL stage IVb (meaning it’s metastasized) thymomas, multiple surgeons have already said my tumors are resectable – they CAN be cut out. Couple all this with the fact the actual type of thymoma I supposedly have, A (on the cellular level), is usually slow growing, and it’s a no-brainer. As Rocky said, sitting on the stool before the final round of his first fight with Apollo: “Cut me Mick. Go on, cut me.” Give me chemo before or after to try to slow/shrink/kill what’s in my lungs and anywhere else it is, but as for the big tumor(s) … Cut. It. Out. Then hit whatever’s left with radiation, and let me get on with living.
Although I’ve never really been sick before this (no surgeries, never spent a night in the hospital, never even been put on medication for more than a week or two), I have walked alongside, advocated for, and cared for many loved ones who have. Now it’s my turn. Before I go any further, let me tell you where I stand on a few things with regards to getting sick, being sick, and getting medical treatment:
- I believe in faith, prayer, and miracles (big and small)
- I don’t believe every prayer is answered the way I’d like
- I believe in the amazing advances of conventional medicine over the past several hundred years, and I respect and admire the countless men and women who’ve dedicated their lives to achieving those advances
- I don’t believe doctors know everything – they are human, they don’t always agree with each other, and they are sometimes limited by their own nature (pride, egos, personal issues, past experiences, biases, etc.), not to mention the bureaucracies they work for and/or are governed by
- I believe, as a patient, to whatever extent I can, I have to be my own advocate (enlisting friends and family to help) – I have to roll up my sleeves, get educated, find my voice, get multiple opinions, ask questions, and trust my instincts
- I don’t believe, as a patient, I can afford to disregard expert advice or decline treatment, especially if I’ve done all of the above, just because I want something to be true or not true, or I want an easy “fix”
- I do believe in the benefits of holistic, alternative medicine – there’s so much we still don’t know, and it’s hard to find a doctor who looks at the “big picture”
- I don’t believe in quackery, and I despise anyone who profits off the misery of others by offering ridiculous cures that are just, well, ridiculous … no, I don’t think a pumpkin-juice fast is all I need to save me (although a pumpkin-spiced-latte fast sounds kinda good …)
- I do believe that lifestyle choices and the decisions we make often play a huge role in whether we get sick
- I don’t believe this is always the case – I’m not the cleanest living guy in the world, but I’m the same weight I was when I graduated from high school, I’ve never smoked a cigarette, I barely drink, my diet’s cleaner now than it’s ever been, I’ve exercised regularly my entire life, yada, yada, yada – to the extent it even matters, I did not “cause” my cancer – but, in the words of Socrates (or was it Plato?): shit happens
With that all being said, we’ve gotten after it this week. Research, phone calls, emails, etc. At one point, Frankie-Two-Phones was talking about taking me to Mexico to get surgery. I immediately wondered if maybe I could get a two-for: sternotomy combined with butt implants (hey, no running – I’m wasting away back there). In the end, we decided such a trip would really suck, so we settled on a letter, which I then wrote, summarizing my case and emphasizing the fact that the combination of details are so rare, it’s hard for anyone to really know what will happen. I explained I’m not expecting surgery to cure me, but I made the case it might buy me time and improve my quality of life. Yes, it’s a weird thing to beg someone to saw through your sternum lengthwise and then split it open like a crab claw, but that’s what I did. I sent the letter off to the teams at Georgetown and MSK. BOOM, within an hour, I had an email back from the oncologist at Georgetown: in his opinion, surgery is NOT off the table – I need chemo first (gotta try to stop it in its tracks in the lungs and anywhere else it is), but if I get a “good” response (unfortunately, with this cancer, sometimes it just keeps growing even with chemo), we can then revisit surgery. MSK got back to me quickly too, although I don’t have an answer yet – I have a televisit with their surgeon next Tuesday.
It may not seem like much, having one doctor say “maybe,” but man, it is. It’s a huge blessing. A huge prayer answered!!! That’s all I needed – a little hole in the offensive line, a sliver of daylight, and I’m planting my foot, lowering my pads, and hitting it.
So there you have it – here’s where I’m at right now:
Today: had a televisit with Georgetown oncologist to discuss details of chemo – looks like my golden locks (no haircut since April) are about to go bye-bye and bets are being taken on the puking (I have not puked of “natural causes” since childhood) – but he confirmed if the chemo can knock the cancer down, surgery after is back in play
Next Tuesday: televisit with MSK surgeon to make my case for surgery with them
Next Thursday: pre-chemo EKG and get the port put in
Monday (the 23rd): first round of chemo – 6-8 hour sessions (really?), every 3 weeks, 4-6 rounds, scans in between to see how things are looking
That’s it folks! Love, Peace, and Thanks to all – for all the prayers, texts, calls, drop-ins, food, favors – all those things just constantly lift us up more than you’ll ever understand …
However, if someone locks up the thyjoema.com domain before me, I’m going to be very upset.