Yesterday Gerry, Andy and I went to “Chemo Class” and learned about things to watch out for during my chemo (which starts on Monday, Aug 20 – our 25th Wedding Anniversary…) and get details on the average Chemo day, tips on dealing with the nausea, etc.
It was a good and helpful 40 minutes given by a pharmacy student and a nurse, very well done. Thanks, HealthEast!
THEN my nudging and — yes, complaining — reaped the benefit of a meeting with two of the head honchos from the St. John’s Cancer Care Center AND my navigator (who is worth her weight in gold!)
We discussed the issues that had been bothering me, and to their credit they didn’t just pass along, “Oh, yes, we will DEFINITELY FIX THAT!” happy talk, but we had a REAL discussion about how the dynamics of the center are changing since the merger with Fairview, the drawbacks of staff shortages (and why it’s hard to just go off into a private room with a scheduler to comfortably set up my appointments.)
The discussion was good, honest, and I’m hopeful that if immediate results aren’t forthcoming, it won’t be for lack of notice or trying. All I really ask is that they begin to SEE what could make the experience better for the patient, and seeing, begin to act.
So I WILL be getting my Chemo next week at St. John’s. Then I have 2 weeks “off” during which time my doctor seems to think there’s a very good chance that I’ll need transfusions (the chemo I’ll be on is going to be pretty hard-core, Gerry found an article about it where it’s called, “R-CHOP” and it looks – daunting.
Gerry’s hematologist at Mayo, Dr. Sue, has become a personal friend of ours over the past 12 years. We LOVE seeing her, we share a lot of sensibilities of East Coast Jew-adjacent folks and we laugh like nuts when we’re together.
Last November when I was absolutely knackered Sue picked up on it, and was a bit concerned when twice in a row I was permitted to give blood (my habit had been to give blood every 3rd month while Gerry was getting his own samples drawn) because of low hemoglobin levels. Instinctively, Sue knew something was up.
Sue has ALSO had her run in with Lymphoma. The fact that our cancers intertwine between each other now seems bizarrely natural and familiar.
So Dr. Sue very much wants me to get a Mayo 2nd opinion, especially now that Stem Cell Transplant has been mentioned as a therapy to prevent return of the disease WHEN we are able to stop this nastiness in its tracks.
So during my two weeks off we’ll try to get me into Mayo for more testing. We’re still looking into what this means in terms of insurance, and places where I might stay while in Rochester. Financially we’re in a VERY different position than we were 12 years ago. At that point Gerry’s insurance, through his amazing union (IATSE Local #1) covered so much of our auxiliary costs (hotel room, food, etc.)
We’re NOT in that position this time, and 12 years of Gerry being disabled and me earning never quite as much as I’d hoped each year has put us on the back foot. So we’re looking into Hope Lodge and other places/schemes whereby I could stay in Rochester for my one week on with Chemo, then back to St. Paul for my 2 weeks off.
And THAT is scary, too. What if, while I’m home in St. Paul, I get complications. This is all too big right now to take on in one swallow, I need to cut it into bites and digest it, which I will.
Gerry, who is the best human being I could ever be married to, has been thrown for a loop by this. He is so helpful, so wonderful, but I also find that he’s oddly paralyzed by the idea that I have a disease that will be rocking his world and perhaps shattering it, too.
So I look to him for help that he is having a hard time giving. And I have to realize this; Gerry is NOT Superman, even though he’d like to be. Andy is wonderful, but learning the ropes. The navigator at Health East is almost magical in her ability to understand and help, would I be able to find a social worker in Rochester who could fill this role?
All this is part of breaking down the problem to make it manageable. Who knows, maybe Mayo will say there’s nothing they could do that HealthEast isn’t. Maybe they won’t want to take me on. Maybe my insurance makes this whole thing moot.
Stay tuned. I hate having this cancer, I hate it like poison.
But I do love a challenge.