Where was I? Oh yeah, ugly-crying at all. the. things.
I really can’t begin to recount all the kindnesses bestowed on us these past few months. I went to get something out of the car the other night and there was note and a Starbucks card under the doormat, left by a Secret Santa. A few days later I came home to a box of Christmas cookies on the front porch. Then Friday afternoon another neighbor & friend dropped by with another basket-o-goodies, just in time for family movie night. I actually made an appearance at work the other day (they’ve installed wood floors, painted the walls and re-carpeted the stairway since I was there last. I had to do a double-take to make sure I was in the right building! Ha!), and one of the super sweet gals I work with brought everyone’s favorite Starbucks drinks to our Communications Team meeting, just to celebrate my being there. She doesn’t even drink coffee (what?!?!?!), but she has all of our favorite drinks down and surprised us with them. The people in our lives are simply a-mazing.
I’m trying to learn to extend that same kindness to myself…
We were officially released from care at the SCCA on November 30th, exactly two months after “checking in” for pre-transplant, transplant and post-transplant care. The last 10 days were full of appointments, final lab workups, discharge and long-term care classes, meetings with the nutritionist, reviews with the oncologists and final check-ups with our team. To be honest, it was a bittersweet goodbye. On one hand, you’re excited and ready to move on. On the other hand, you’ve been with these people daily for the past few months, through some of the most difficult days of your life, and now you’re untying the mooring lines and setting sail. It’s not completely dissimilar to leaving the hospital with a newborn. You’re excited for what’s ahead, but kind of scared to death.
It took a few days of unpacking (it’s amazing how much stuff you can accumulate living in another apartment for a couple months) and sorting through all the stuff that has become a part of our daily lives: the pills (don’t get me started), the medical supplies, and all the other things we needed to buy to facilitate this “new normal.” After a few days of sorting through it all and figuring out what to do with and where to put everything, things started to feel normal. We got home last Monday night after having been out and were getting the kids ready for bed and reading our Advent devotional and it was the first time in months that things felt normal. I wish I could bottle the feeling of that moment.
Corey’s numbers are all headed in the right direction. As part of this post-transplant transition, he’ll go from daily lab work down to just weekly lab work, and from seeing our “team” every day to seeing our oncologist back home every other week. This will continue for the next couple months, until we get to the 80-day mark, when they’ll do a complete disease re-staging. At that point, he’ll have another double bone marrow biopsy (one on each side), another full body scan/x-ray, another MRI and extensive blood work. All of this will tell us, after his numbers have leveled out post-transplant, where the cancer is.
Best case scenario is the cancer is undetectable, obviously. If the cancer is still present but lower than it was heading into transplant, they consider it a “very good partial response.” It is within the realm of possibility that if the cancer is still present but has shown a good response, the numbers could continue to fall for a full year after transplant and he could end the first year with the cancer undetectable, even if it isn’t that way at the 80-day mark.
At the other end of the case-scenario scale is what happens if the cancer is at the same level or higher than it was going into transplant. In our final review with Dr. Barr, the oncologist on rotation for the last part of our treatment at the SCCA, she said Corey still had “quite a bit of cancerous plasma in the bone marrow” going into the transplant. Remember that they found a) a higher level of cancer than they hoped to find and b) that it was a more aggressive strain than they originally thought when they ran all the tests upon our arrival at the SCCA. He had that week of IV chemo at UW, but they had to change the chemo regimen from what they originally wanted to give him because his echocardiogram showed some concerns. The chemo he ended up getting that week “does not have a great effect” on the cancer, but his proteins did drop some, so “a very good partial response was likely.” So, worst case scenario, if the cancer is at the same level or higher, they would consider doing another bone marrow transplant right away. I think it’s pretty obvious which end of the scale we’re praying we land on.
I’ve told you before that I’m a processor. It takes me a while of mulling things over before I can effectively communicate what I’m thinking, feeling. After being home a few days, I’ve come to the conclusion that I underestimated how much mental and emotional energy all of this would take from me. I knew what it would take from Corey, and I knew I would need to alternate between being strong and orderly and forceful and kind, but I kind of expected it to be just one more thing. Like a sherpa, just pile it on and I’ll hike it up the mountain.
Like happens so often, I got totally sick when we got back home. For 5 days, I existed solely on Theraflu, essential oils, hot tea, and, once again, asking friends to take my kids to church and practice. I overestimated my ability to walk back into my world without missing a beat. I honestly thought I could come home and flip a switch and be back into work mode, mom mode, cape-wearing, superhero mode. It is truly humbling to admit how wrong I was.
I was sharing this with my sister-in-law tonight and she summed it up perfectly: “You thought this would be just one more ball to keep in the air, along with everything else you were juggling. Instead, it was one great big ball that forced you to let all the other ones drop.” And now that the one big thing has gotten a bit lighter and we’re in a holding pattern that doesn’t require me to be on high alert 24/7, I’m looking at all the things at my feet, contemplating which ones I’m to pick up again, and which ones I’m to let lie.
A friend of mine posted something on Facebook a while back that said, “I wonder how much of what weighs me down is not mine to carry.” Previous iterations of myself wouldn’t have given it a second thought. I’d have picked it all back up and carried on, like the good, self-sacrificing sherpa I’ve been. But not this time. This time I’m gonna just let them lie there a bit. I’m going to “be still” like it says in Psalm 46:10. I’m going to surround myself with iron-sharpeners (Proverbs 27:17) and people who will fill my ears and heart and spirit with godly advice and direction. I’m going to give myself the gift of time, and ease back into life at a reasonable speed. I’m going to exercise grace with myself, the way I would with a friend.
I’ve said it before but it bears repeating. The biggest tragedy of this whole experience, for me, will be if we come through this wholly unchanged. So I am going to change what I’ve always done and I’m going to exercise a grace with myself that I’ve not exercised in the past. I am going to consider, prayerfully and with wisdom, which of the things lying at my feet will be most beneficial to my family, in this post-transplant “new normal.” I’m not at all sure what my world will look like when we meet with the oncologist to get the re-staging results at the 90-day mark. I do know that between now and then, I’m going to pass on my sherpa tendencies and apply grace instead.
I think I just found my word for 2018.