So we’re taking the month off. Kind of.
Corey’s lab results at the end of Round 5 were really good. He’s not in “clinical remission” but his numbers are close enough that they decided skip the full chemo regimen this month and take a pause in treatment until we begin the next phase. Two of the four proteins they use to measure the cancer levels are NORMAL (woohoo!) and the other two are just north of where they should be so they said he was “close enough” to advance to the next phase of treatment.
So we’re taking the month off. Kind of. Our local oncologist spoke with the oncologist down at the SCCA after our big meeting down there and they decided to have Corey go ahead with one of the chemo drugs for this month, but hold off on everything else. There must be something to the “cocktail” of drugs he’s been on up ’til now because this semi-round of treatment has been worse than the previous five. He has two more shots of chemo this week, then we’ll have the (rest of the) month off.
Our official intake date down at the Seattle Cancer Care Alliance [SCCA] is August 31. That’s when we’ll begin the next phase. I haven’t spoken much about it ’til now because, honestly, I’m just wrapping my head around it myself.
Corey will be undergoing what’s called an autologous stem cell/bone marrow transplant (or autotransplant) this fall. As best I can, I’ll break it down for you. Because this is a blood-borne cancer, there are no tumors to remove. The cancer is in the plasma cells (blood) all throughout his bone marrow. The chemo treatments he’s been going through the past few months have all but killed the cancer. Like I said, he’s not in “clinical remission” but they feel the cancer has been knocked down far enough to proceed.
So here’s what’s next:
Beginning August 31, Corey will undergo (at least) two weeks of pre-transplant tests and workups. He has to have everything from an EKG to an MRI, he has to see their dentist (did you know you can’t have any kind of dental work done for a year after a transplant? Me neither.), have another bone marrow biopsy done (I’m betting he won’t eat anything that day before the procedure. Haha! See my previous post “Tattoos and Told-You-Sos” for a funny story about his first one), have copious amounts of blood work done and make sure there’s nothing lingering or lying dormant that would compromise his immune system once they begin the transplant. This should take about two weeks – if everything goes off without a hitch and nothing alerts them to the need for more tests. That’s two weeks of us traveling to Seattle every day or every other day.
And as Seattle is ranked in the top 10 worst commute cities in the country, this should be enjoyable. #JustSayNoToRoadRage #MyCDPlayerIsBroken #AndMyCarHas200,000Miles #PleaseKeepTruckin’ #AndPleasePlayGoodMusicOnTheRadio #DeepBreathsDeeeeeeepBreaths #ThinkHappyThoughts
Anyway, once the tests and workups are done and they determine he’s ready to go, well, this is when treatment begins in earnest.
Chester is the chest model they brought in to explain the Hickman catheter, which is the device they’ll use to do the actual transplant. And I’ll just say that the thought of them inserting this under his skin and into his heart hasn’t been super great for Corey.
Corey doesn’t much care for Chester.
[We need a name for Corey’s Hickman catheter. I’m open to suggestions.]
Anyway, once the Hickman is in, we can’t be more than 30 minutes (including traffic) away from the SCCA facilities.
A: That’s 30 minutes. In Seattle traffic.
B: That’s “WE.”
I knew about the 30 minute thing (kind of). I knew Corey would have to be onsite during all of this. But I have no idea why I thought he wouldn’t need a “caretaker” there with him. I guess I had it in my head that he’d be in a hospital-ish kind of facility and they would be administering all of his care.
I was wrong.
They have medical housing. Two different facilities, actually. One for general care for people who are there for treatment from out of town and need to be close to the facility, and one dedicated to transplant patients. We’re on the waiting list for the transplant house and have a reservation at the general care house.
Once the Hickman is in (and we’re living downtown), they’ll begin what are called “growth factor shots.” These essentially beef up his bone marrow. They need to beef it up so that when they take some out for the transplant, he still has enough left to, well, support his bones. He’ll go in for these shots twice a day, anywhere from 4 days to 2 weeks, depending on how his body responds to the shots. And if, in their testing, they find any traces of the cancer still in his bone marrow, they’ll administer chemotherapy at the same time they’re beefing up the bones.
I won’t repeat what some of the nurses have said about this process. The PG version is that it’s unpleasant and potentially pretty painful.
Once his bones are sufficiently beefed up…
…I’m sorry, I couldn’t help myself! Laughter is the best medicine, right?
A N Y W A Y . . . Once his bones are sufficiently beefed up, they’ll hook him up to a machine where they’ll draw out his bone marrow, clean, cycle and store it to be returned in a few days, and cycle the rest of what they’ve drawn out but don’t need back into his system. [They do all of this through the Hickman. Fascinating, right?] Once they complete this process, they’ll give his body a few days to resettle and rest and allow his blood counts to normalize.
And then they’ll blast him with chemo.
Yes, they’ve used the term blast. Often. This is the big guns chemo. The kind with side effects. Ugly ones.
They call this “Day -2.” This is also when they’ll start radiation if they find that necessary in the pre-transplant workups. “Day -1” is a rest day, then “Day 0” is transplant day, when they reintroduce his cleaned-up, treated bone marrow. They refer to this as your “new birthday.”
Then for the next 30 days (at a minimum), we’ll be living onsite (hopefully at the transplant house by that time) while Corey cycles through the chemo and his immune system recovers. If you’re counting, that’s a minimum (if everything goes textbook perfectly) of six weeks we’ll be living onsite downtown, but they say to plan for more like 10 weeks, since more than 80% of patients have to be hospitalized at some point during this phase.
The logistics of Corey and me being downtown and our kids being home haven’t yet been fully worked out. Our official intake day is 3 days before the first day of school. Not ideal timing. BUT the list of people saying, “I can help, in whatever way you need.” is long – and growing by the day. Just today I’ve added another two names to the list of family, friends, teachers and neighbors who genuinely want to help, and who I really will have to rely on. (Oh my word, you have no idea how hard that is for me!) Some who will step in to help with the role of “caretaker” for Corey (on the days when he’s doing relatively well) while I come home to check in on the kids, and some who will come stay with the kids while I’m downtown taking care of Corey.
If I’m being honest, this part of the process has been a wee bit stressful. Not fearful, I don’t feel fear, just a bit of how in the world is this all going to work? I’m a schedule mom; bedtimes, homework routines, all that. The thought of launching into a new school year without a firm grasp on that has me, well… I’m trying to look for a synonym for “freaked out” but am coming up short. 100 times a day I remind myself that none of this took the Lord by surprise. He knew about all of it – and He has it all figured out. And I need to rest in that.
And then I remind myself again, in approximately four minutes, to Rest. In. That. (Only 99 reminders to go!)
Our youth pastor spoke this past weekend at church and the title of his message was “DON’T LOOK DOWN! How can I live life with a confidence that overcomes fear?” Even as I type this I have to laugh at God’s timing. We’re doing a “Summer in the Psalms” series at church, and the timing has been absolutely perfect. If you’ve never read in the Psalms, I encourage you to. They speak to every possible emotion you could ever experience, while constantly reminding you of God’s provision, His care and His great love for you. I’ve experienced a lot of emotions in the couple weeks since our big appointment down at the SCCA, but God has met me each morning with a new promise. There have been days when I’ve read the featured Psalm in our summer reading plan more than once, and I’ve been comforted, encouraged, cheered on and challenged to keep going with each reading.
So I will.
I will trust. I will relinquish my need to hold on to everything tightly and will allow God to use the people around me to fill the gaps. They may fill them differently than I would, but they’ll be filled. Corey will be cared for, my children won’t go unfed or unbathed or unhomeworked (one of his former teachers is on my list, after all) or uncared for. They will see this season of life through a new filter, or several new filters, and they will likely love every minute of it. And I will too. It’ll be like a kaleidoscope of God’s provision and grace, and we’ll watch in awe at the awesome patterns He’s strewing across our fields of vision. Doesn’t sound too bad when you put it like that, does it?
I was in Hobby Lobby (which might be one of my favorite places) to return something the other day and saw this little sign, which just happened to fit perfectly on the one blank space on my gallery wall. It’s my new motto for this next season of life.
So here’s to a kaleidoscope of grace. I’m looking quite forward to watching it all unfold.
P.S. Here’s the summer reading plan I was talking about. [If you ever have the inclination to journey through the Psalms, ignore the dates and pencil in new ones based on when you start.] They’ve been a lifesaver for me more than once.