It feels good to have unloaded but.... there's no forgetting that CANCER has changed our entire lives.
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One year ago today.... so much has changed. One year ago today, my husband woke me up, horrified because his urine was almost pure blood. He had no other symptoms and was freaking out.
We got him in to see a doctor ASAP (not our regular doctor who was unavailable but an old friend of the family who had an opening) who thought it was most likely kidney stones and put him on antibiotics. Later that day though, he called & said the more he thought about it, the more uncertain he was with that diagnosis since hubby wasn't in any pain, and asked him to go get a CT scan just to be sure what was going on. So we dropped everything & headed off to get the CT scan, joking that this was a lot of hoopla for run of the mill kidney stones....
How innocent we were.....
A few hours later, we got a notification that the results had been uploaded to MyChart. Hubby asked me to check since he's not good with medical terminology so I logged in to read. And I was NOT prepared for what I saw. I couldn't even speak. I just sat there staring at it: "large mass, suspected renal carcinoma"....
He was like "Hit me with it. How many stones am I gonna have to pass????" I finally managed to come up with "It's not stones... you need to read this...." And he did.
And then he looked at me with a very confused look on his face & said "So... are they trying to say I have CANCER???????"
And the only response I could come up with was "Yeah...."
That was the end of life as we knew it. Everything since then has been colored by or affected by CANCER. Whether the fear of what might come or actual physical symptoms - EVERYTHING COMES BACK TO CANCER.
He had a full neprectomy a couple of months later (in October) & we were still hopeful that maybe the scans were wrong & it was some benign condition masquerading as the Big C. Nope. It was the real thing. And a rare variety too. Chromophobe (which took me forever to remember because I kept thinking Kodachrome). And it wasn't just in his kidney but was in several surrounding lymph nodes as well.
So... Stage 3. That's kinda scary but not catastrophic. We could deal with that. I mean, chromophobe isn't supposed to be aggressive, right????? And hey, they got all the affected lymph nodes so we're good.
That lasted until his first scans at the beginning of January.... Oops, it seems they missed a lymph node & it's big & bad ugly. And inoperable. And by the way, the original tumor has a "high mitotic rate" so it's probably more aggressive than most.
Oh and there's no adjuvent therapy for chromophobe so you're just sh** out of luck until it spreads somewhere else and goes Stage 4. And at that point, you just need to say your good byes and get your affairs in order.
Panic stricken, I finally got hubby to agree to travel to MD Anderson to be seen by a RCC specialist. I'd been pushing for that since the mass was first found JUST IN CASE but he'd been adamant that it was no big deal & once he had surgery, all would be fine.
Well it wasn't.
And it got worse.
By the time we got to MDA in February, the lymph node was bigger & there were tumors also found in his liver... "Not aggressive" - my A$$!!!!!!!! Even Dr. Tannir said it was one of the most aggressive cases of chromophobe RCC that he'd seen.
But he was hopeful that we could still knock it down so he started hubby on keytruda (IV every 6 weeks) and lenvima (tablets daily). He was 100% certain that it would control the growth.
Dangit, he was wrong.
By the time we returned in May, in Dr. Tannir's words, the cancer had "exploded. " More lymph nodes. More tumors in the kidney. One rib to the point that it had broken. Two spots on his spine. And one on a hip.
A quick change of meds was obviously in order so he started him on Everolimus. Normally, it's prescribed in conjuction with Lenvima but since Lenvima hadn't worked at all with Keytruda, he opted to go with Everolimus alone.
We were terrified. But we trust his expertise.
And it seems to have paid off for now. In July, there was no new growth & no new tumors. The others weren't shrinking but there at least wasn't progression. We pray that Everolimus continues to work but the research I've read up on for it terrifies me - and I havn't shared it with him. He needs hope.
I'd like to say that with him stable in terms of progression right now, our life was back to relative "normal" but it's not. And likely never will be.
He's constantly exhausted & so weak that we can't even go out on our boat to float around the lake like he so loved to do. We haven't been out to our campsite at our farm all year - it hasn't even been mowed because he's just too weak to do it. Our kids have been coming in every few weeks to mow here at the house.
He's starting to lose weight because everything tastes funny, especially anything that has a sweet flavor because "sweet" now tastes "rotten and musty." And he keeps breaking out in big ugly "zits" and "boils" all over. I have to do skin checks daily and treat everything that pops up.
We had to cancel our dream vacation (the Pacific Northwest and cruise to Alaska) this summer. He's had to stop going to the office & is medically approved to work from home. We had to sell our respective cars (that were NOT smooth riding) and purchase something that the could ride comfortable in due to the bone mets. We now have to pay people to do work that he'd normally do himself (plumbing, car repairs, sealing the driveway, etc.).
We'd hoped to at least get a long weekend away next month but he says he's just too tired & weak to go anywhere and that riding very far in the car would be too hard.
The last trip to MDA absolutely wore him out after our flights were delayed for hours upon hours and his pain medication wore off. Not to mention the long hikes thru the airports while pulling a wheeled bag and carrying a laptop backpack. It terrifies me because I don't know how much longer he'll be able to handle those trips & I have absolutely no faith in his local oncologist.
And above everything else, there's the fear that the Everolimus will stop working. Which it will. There's just no way of knowing when. And DNA analysis didn't turn up any other form of treatment which would be likely to work.
I'm not complaining. Really I'm not. He's here & is still HIM so that's what's most important. The rest is just an "adjustment" - it's not the life we'd planned for so many years with retirement so close. But it's what it is & we'll deal with it.
It's just hard to believe that only 1 year ago, everything changed.