I’ve been sitting here for a while, wondering where to start. Thankfully the Olympics are on (on mute) so at least I have something to alternate looking at, other than just a white screen and blinking cursor.
I totally geek out on the Olympics. I watch every bit of them that I can, even the weird stuff, like curling (which my mom loves. Huh?!?!). There is something so very inspiring about people pushing way past the limits even they thought were possible. About trying and trying again, even when you’ve literally crashed and burned. About overcoming obstacles and barriers and dreaming so. very. big. I feel totally crushed at every crash, every slip on the ice, every wipe out, like it was me, personally, experiencing the loss. But oh the way these athletes exhibit such grace and humility and fortitude, even when things don’t go their way. I can’t be the only one inspired by that, right?
It’s a good season to have that paraded in front of me 24/7.
We had two appointments last week that didn’t go like we wanted them to. We met with Dr. Lukas, our local oncologist, on Wednesday. He’s the one we were first referred to when Corey was initially diagnosed and the one who oversaw our first rounds of chemotherapy – pre-transplant. He reviewed with us the results of all the tests Corey’d been through as part of his 90-day, post-transplant work-up. Things could always be worse, but the news wasn’t great.
As a reminder, the level of cancer remaining in Corey’s body right before transplant was higher than they wanted it to be. The marker for one particular test they use showed .1 right before transplant, and they really want it to be more like .05. Obviously, the lower the cancer level going into transplant, the greater the likelihood of a good (or great) response. So despite the higher than preferred number, we all decided to move forward with the transplant since Corey had responded so well to all his other treatment up to that point.
When they ran the test again as part of this 90-day work-up, it came back at a .3. And yes, if you’re asking yourself the same question I asked myself, that’s moving in the wrong direction. All of the tests, including the (double) bone marrow biopsy, basically show that somewhere around 20% of the plasma in Corey’s bone marrow is still cancerous. Going into the transplant we were sitting somewhere around 10%.
Dr. Lukas said if we sit at 20% for the next one or two years (or more) while Corey’s on maintenance chemotherapy and those numbers don’t advance, he’d consider that a success. We were meeting with our team down at the Seattle Cancer Care Alliance on Friday to get going on our maintenance program so he advised that we wait and see what they had to say.
Jump forward to Friday and our appointment at the SCCA for the clinical trial workup. We met with a different team than we’ve met with before, including Dr. Holmberg, the head of the clinical trial Corey had been accepted into. She’s one of those super brilliant, academic types (PhD from Harvard Medical, etc…) so our hour-long meeting was filled with a lot of those sciency terms that kind of make my head swim. I’ll spare you all the multisyllabic words and scientific terms and just summarize her report: Corey didn’t respond to the transplant like they’d hoped (like we’d hoped) and she saw no need to do another transplant (which I kind of thought might be the recommendation) because it just didn’t work. She also felt that the clinical trial was not a good course of action for Corey because his disease appears to be more aggressive than what this regimen would likely be able to treat. Her feeling was that treating him with the drugs in this trial would be like putting a lid on a boiling pot and hoping it doesn’t boil over, but kind of expecting it to. All while knowing that in two years (when this trial would end) when they did take that lid off, it would likely break through that boiling point pretty quickly.
Did I mention that our appointments didn’t go like we wanted them to?
Do you remember my “‘Forget all the Plans’ World Tour” post? Yeah, well, here I am… Forgetting. All. The. Plans… again.
The recommendation at this point is to go back to Dr. Lukas and repeat the whole treatment regimen Corey went through when he was first diagnosed. This includes two chemotherapy drugs and a steroid, along with a bone-strengthening IV infusion (that he’ll receive once a month). Once he cycles through three, four, five of these treatments, whatever it takes to get his numbers as low as they can possibly get, he’ll go on a lower maintenance level of one of the chemo drugs he’ll be taking (at a higher dose) as part of his treatment. He responded well to this treatment regimen before so the hope is that he’ll respond well to it again.
Last time he went through this regimen, it took four cycles for his main marker to become undetectable (his numbers dropped below the “detectable” threshold but he never quite reached clinical remission) so that’s kind of what we’re anticipating again with this go-round.
My thoughts on this whole matter are still pretty choppy, if I’m being honest. I don’t feel like I’ve fully wrapped my head around the idea of “living with cancer.” Yes, “they say” this kind of cancer is incurable and that even if the transplant had worked the cancer would come back, likely within a couple of years. But I guess that, subconsciously, I just believed that hey, he went through the initial rounds of chemo and got his numbers low, then he went through the transplant, which was a really. big. deal., then he came home and was careful (at least while I was watching) during that super-important 90-day period following the transplant and that, after all that, his tests would come back clear and he’d be cancer free. And that maybe it would just never come back.
And now here I am, staring at the cursor again, not quite knowing how to articulate what’s swirling through my head.
I mean, I know (like I really know and really believe) that God can heal Corey – in. an. instant. And I will never, ever stop praying that way. I also know that our healing doesn’t always come this side of Heaven. December 1 we lost a woman who was more like a mother to me than any non-family member in my life. Our families really embody the term “framily.” One of her sons was a pall bearer at my brother’s funeral, my sister and I are really more like sisters with her daughter than friends and we have all walked through love, loss, birth, death and every possible thing in between together. And yet this woman, who completely passionately loved God and desperately poured of herself to those around her, lost her battle with cancer. It was ugly and painful and tragic and I almost can’t breathe when I think about it. Yet I also know stories of people who were miraculously healed and have lived beautiful and full lives beyond the blip that cancer was on the timeline of their lives.
So what do I do with the dissonance of these stories?
I’ll tell you what. I make the conscious decision to put one foot in front of the other and run my race (Philippians 3:12-14). I choose to fix my eyes, not on what is around me, not on the news that “at some point your body will reject the maintenance program and we’ll have to look for something new,” but on the Author and Finisher of my faith (Hebrews 12:1-2). The one who still, even in the swirl of last week’s news and the ever-changing plans, gives me a peace that passes all human understanding (Philippians 4:7). I remember to set the Lord always before me, not just when the news is good, but always, because the fact that He is at my right hand means I will not be shaken (Psalm 16:8). I move in closer because I know that in order to be in the shadow of His wing, I have to be close enough to the Source (Psalm 63:7).
I heard this song the other day for the first time. The verses don’t necessarily capture what we’re walking through, but man, the lines of the chorus jumped right through the speakers at me and I’ve been singing it almost non-stop the past few days:
Fear, he is a liar
He will take your breath
stop you in your steps;
Fear, he is a liar
He will rob your rest,
steal your happiness;
Cast your fear in the fire,
Because fear, he is a liar.
So cheers to casting that fear into the fire and heading into the next phase of this ever-changing journey…unshaken.