March 26, 1997.
If you mention that date to a die hard Detroit Red Wings fan, you get a little smile. A kind of knowing, confident smile. Like, yeah, that was the day that we got ‘em.
I could write about this for about three days, but this is a cancer blog after all. So, just a short history.
March 26, 1997 was the day that the Red Wings became the kind of a team that would go on to win multiple Stanley Cups. On that day, they stood up to their hated rivals, the Colorado Avalanche.
The main fight of that night was when Darren McCarty went against the punk Claude Lemieux. There was another fight going on at the time between Igor Larianov and Peter Forsburg, two guys that rarely fought. McCarty took advantage of the situation to throw down on Lemieux, who in the previous year’s playoffs had severely injured Kris Draper with a cheap shot into the boards.
McCarty just started slugging him out of nowhere, and Lemieux was caught completely by surprise. After being on the receiving end of multiple punches to the face, Lemieux went down to the ice and covered up. In hockey parlance, that’s known as turtling. In the biggest fight of his life, Lemieux turtled. Red Wings fans rejoiced!!
I was recently watching a documentary on the Red Wings/Avalanche rivalry. Lemieux and McCarty were on stage together describing the fight and what happened that night. Lemieux explained that when McCarty jumped him, it was such a surprise that he had no chance to defend himself, and all he could do was just cover up and hope for the best.
We Red Wings fans love the fact that when push came to shove, Lemieux turtled. But, watching the doc, you can see on the video from the game that Lemieux had no choice. He had to protect himself.
As I go through all my cancer battles and fights, I have never turtled. I’ve never covered up. Every reoccurrence, every setback, it was, well, what do we do now?
I had my prostate removed, and the cancer came back. I had 38 sessions of targeted radiation, and the cancer came back. After that it was androgen deprivation therapy.
ADT isn’t working? Let’s go with chemo. Chemo isn’t working? Lets do more chemo. That’s not working either? Let’s go with clinical trials. Clinical trials aren’t working? Well, what’s this new thing called Pluvito? Let’s do this!!
But, that’s where this latest fight goes off the rails. I find myself not only in a fight against a disease that’s been trying to kill me for the last 12 years, but also in a fight with drug companies, clueless doctors and the unwieldy bureaucracy of medical insurance companies.
I’ve become my own patient advocate. I call docs and hospitals and insurance companies to try to get everyone on the same page. My original consult for Pluvicto was back in June. I had a PET scan in May, and unbeknownst to everyone, they used a marker that the insurance company didn’t think was legit for my upcoming Pluvicto treatments.
So I had to get another scan with a different marker. But right before the second scan, the insurance company turned down permission because they couldn’t figure out why I would need a new scan.
Uh…hello? Because you guys told me I HAD TO!! After a couple of days worth of rather impassioned calls, the second scan was approved.
(On one of the calls, I may have actually said to a customer service person for the insurance company, “YOU GUYS ARE GONNA KILL ME!”Wow. A little over dramatic. Although, things did move along pretty quickly after that.)
After the second scan, I get the rather disappointing results back and oh yeah, THEY USED THE SAME MARKER AS THEY DID IN THE FIRST SCAN!!
A few calls later, I was assured that they used they correct marker, but the radiologist wrote down the wrong one. I later found out he went on vacation the next week, so maybe his head wasn’t in his work.
(Look, I know that people in the medical profession are normal humans too. Humans make mistakes. But, good Lord, with everything I had to go through just to get this scan done, seeing this in the results report almost killed me. I was apoplectic. I mean, are you fucking kidding me right now?)
The good news is, after all the phone calls and appointments, I finally have a set date to start treatment. The bad news is, that date is October 5, nearly 6 months after my last treatment ended.
Meanwhile, while all this bureaucratic jousting has been going on, my cancer keeps keepin on. It’s lurking under my skin, and doing very bad things. A visit to the bathroom these days sometimes turns up blood in the toilet. The pains in my groin and pelvis get worse as each day progresses, especially if I try to do any work around the house or even go for a short walk with Zoey.
Sleep is difficult, because it usually takes a couple of hours for the pain to fade enough until I can nod off. My latest scan showed a new tumor on a lymph node in my neck, and there is also evidence of more disease in my pelvis and lower back.
And all of this, the cancer, the hospitals, the docs, the insurance companies, has given me a really shitty attitude. I fire off with meanness towards Holly, which she sure as hell doesn’t deserve. I don’t want to deal with anything.
I can feel myself starting to crumple, like a building collapsing onto itself. This is my first blog in months because I just couldn’t get myself together enough to write one.
How do you write about pain? How do you write about frustration? How do you write about things that are so ridiculous that they defy description?
I’m crumpling down to the ice and covering up. I’m putting my arms over my head as I try to survive the blows that come raining down from every angle.
I am in full turtle mode.
I know I have to keep going. I know I have to keep fighting. But right now, I don’t feel like it. I retreat into my shell, and try to keep living.
And maybe, right now, that’s all I can do. For a person that’s used to fighting, turtling feels like losing. I’m sure Claude Lemieux felt that way as he was escorted back to the bench, blood running down his face. But, he lived to fight another day. The next year, he battled McCarty to a draw. I couldn’t stand the guy, but you have to respect that little ball of hate for his ability to get back up off the ice.
I want to do that. I want to get up and smash cancer right in the face once and for all, and defeat this thing that has made a mess of my life. I look forward to the fight.
But, right now, as I wait for the next fight to start, I’ll be here in my shell. I simply don’t have the energy for anything else.
Thanks for reading.
5 thoughts on “Shell Game”
Thank you for your post. My husband is in the same position with this aggressive cancer. The latest setback is that it is in his skull, threatening his dura. He just started Lutitieum but Doc say’s it’ll take a few months to know if this will work. So sorry for both of you. The hardest part is seeing him suffer with the pain and knowing that it will probably get progressively worse. Come out of your shell occasionally to update us and in the meantime I will be sending my thoughts and prayers to you and Holly
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Peace to you Brother !
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You asked how to write about pain and frustration, and I’d say that you just do it as beautifully and with the same raw emotions as you did this post. My heart goes out to you and continues to be inspired by both your writing and your perseverance.
Sadly, our healthcare system is broken. It took me the better part of two months just to get the VA and UCLA to talk to each other about a PSMA PET scan. Once they finally connected, it was another two months before I could get on the schedule. In the interim, my PSA kept rising. It’s tough enough that we have to deal with what the cancer is doing; we don’t need the added stress of administrators complicating and delaying the treatment process. Too many doctors, nurses, and insurance administrators fail to realize that.
From my perspective, there isn’t a single thing wrong with turtling, especially the further into this nightmare we are. It’s how we tune out all the noise, regroup, and refocus. To me, it’s a necessity. I just finished salvage radiation session #30 out of 35 yesterday. But two weeks ago, I was over it. Done. No more, I curled up into a ball and stayed in bed. But I forced myself to get up and went to the session anyways. And I did it again the next day, and I used the weekend to vent, cry, refocus, and return with a renewed sense of purpose on Monday. I’m sure I’ll have similar sessions in my future.
My mom had emphysema and mesothelioma, and she knew all too well that the combination of those two diseases would take away her ability to breathe. There were trials available to her but at a certain point, she refused. Some say she gave up—she “turtled”—by refusing the trials. But in my mind, it was quite the opposite. It wasn’t turtling; it was taking control. She showed a tremendous amount of strength and resolve to live her remaining days the way she wanted, and she did just that. I can only hope to be so strong when my time comes.
Wishing you all the best as you keep on keepin’ on.
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Thank you so much for your kind words. This shit is so hard, and nobody knows that like someone that is going thru it. Blessings to you as you continue your fight, and keep kickin ass!
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Always praying for you.
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