Dear friends, thank you all for slogging through my emotional posts. The loving and thoughtful responses you’ve sent, the comments and phone calls and private messages and texts, the songs and Scripture verses, the tears you’ve cried with me–it means more than I can express.
We just got news today–literally ten minutes ago–and I owe it to you all to keep you in the loop. Let me back up and put it in context, but–spoiler alert–it is hopeful. So, so much more hopeful than I thought it would be.
Backing up for a second, many of you know that Heidi’s MDS blood cancer can only be cured with a bone marrow transplant. However, the initial chemo in January/February of this year didn’t knock down her blast cells (the cells in the bone marrow that need to get wiped out prior to transplant). So she was given a newer (and less tested) chemo that took a tremendous toll on her, reducing her heart function and knocking out her kidneys.
Since the kidneys stopped working (I think that was in March), it’s been all about the kidneys. First, everyone expected them to bounce back. When they didn’t, after many tests and much waiting, the cause was identified as Thrombotic Microangiopathy, another rare disease. I won’t go into the painful details of this part of the 6-month slog, during which Heidi almost died of sepsis, experienced flooding in her lungs more times than I can count, had a month-long hospital stay (among other shorter ones), had gall bladder surgery, a blood clot, and waded as she does now through daily severe nausea and headaches (not to mention she can’t shower, eat salt, is on a restricted diet, and can’t flex her leg at the hip because of her dialysis line). Add to this depression and PTSD from the intense and frequently unpredictable pain that Heidi endures, and she was talking of dying as her only way out.
But misery aside, throughout all of this, the medical question was: will her kidneys get better?
Last Friday–just a few days ago–I went to Madison because that was the day we got the results of her kidney biopsy: were the kidneys dead, or did they still stand a chance at recovering? If it’s not good news, Heidi said, I’m just going to die. I’m done.
The call came at the very end of the day. The message was clear: the kidneys were caput. Done. Never coming back.
That day felt like a death sentence.
Friday night, Heidi and I went to a fancy restaurant, drank cocktails and ate low-sodium/no-sodium food, and talked about her funeral. How she wants to go. What she wants me to do. How she wants me to be there for her kids.
Then, as you all know, Saturday Heidi ended up in the ER with the worst pain of this whole 9-month nightmare. Sunday morning she was talking like she was going to get a referral to palliative care and check herself into hospice as soon as possible. We talked more about her funeral, listened to loud 80s music, laughed and twerked (or tried to), shook from anxiety and cried, and joked about how Erica would sing a rendition of our top hit song “Hell Hell Shit Damn” at the service (martini held aloft).
On the bus back to Chicago, all I could think was–Heidi could be dead within two weeks. I haven’t stopped crying since. I want to support her. I recognize there’s a limit to how much we can take. I have no judgment for her–only love. And yet a world without Heidi is horrible to me.
And now for the good part.
Today, Mike and Heidi met with Dr. Hall, her primary cancer doc who’s in charge of the big picture stuff and the ultimate plan. And instead of simply referring Heidi to palliative care, Dr. Hall said that there have now been eight successful simultaneous kidney/bone marrow transplants. He thinks Heidi has a chance with this procedure.
This is a huge surprise. Erica and I were expecting a “well, we tried.” We were both ready to cancel all plans relating to our regular life and go be with Heidi for her final days.
Instead, the story might not be over.
It all hinges on her bone marrow biopsy. The biopsy is this Friday (and horribly painful). Results will come in a week, on Friday October 11th. If the biopsy finds that the cancer (blast cells) has come raging back, it will be game over and time to plan for hospice care (short of a miracle). But if the blast cells are under a certain level, the plan could be moving forward with a double bone marrow/kidney transplant, with Erica as the donor.
It would still be risky. Erica is only a half match. But there could be a chance. And I am clinging to that. God, come through. God, remember those signs? Follow through. Do what you said. Don’t let us fall. All eyes are on you–even mine, which are so tired from weeping and hungry for light and joy to shine on us again.