Going Home From Transplant #2!
Hi everyone. I know it’s been awhile. I just haven’t had the emotional or physical energy to write over the last six weeks. After Mom’s passing, we hurried back to North Carolina to get started on transplant number two and jumped into transplant life with both feet. Keep reading for updates on how all that went.
Twenty-Eight Days in the Hospital
After the first transplant turned out to be such a complicated course (we heard that phrase nearly a million times over the last few months), Mike was slated to stay inpatient longer this transplant so they could watch him even more closely. That meant an entire month in the hospital.
While this isn’t the first time he’s spent a month in the hospital (remember the ICU days of August 2024?), it doesn’t make the stay any less exhausting for either of us. The accommodations had a significantly better view this time, though. He got a room looking over the beautiful Duke Chapel for the entire stay. We were so thankful for that view each day!
While Mike is in the hospital, I have some dear friends who are really a found family who I stay with. They live an hour from Duke University Hospital. During previous stays, I always called Mom on my way to the hospital every morning. Those mornings seemed quite empty to me without those phone calls. Like I was missing a piece of my whole life. Before everyone got critically ill, I would often talk with Mom in the mornings and have coffee with her while we discussed life and these phone calls during my drive were a continuation of that. Gosh, I miss her. The other day, I got the chance to meet the precious newborn daughter of some different dear friends. As I looked at how gorgeous and sweet she was, my first instinct was to take a picture of her while I was holding her and send it to Mom. She loved babies, especially little girls with giant bows in their hair. But reality slapped me in the face and I remembered I couldn’t do that. These sort of moments are why it’s been so hard for me to write anything up to this point. It’s hard to write when you can’t see for the tears in your eyes. (My apologies in advance for any obvious typos I wasn’t able to see, lol!) But I digress . . .
How The Transplant Went . . .
Overall, really well. There were a few bumps along the road that the transplant team was anticipating and quickly handled. But he did so well, especially considering they were unsure whether or not to even proceed with the second one at all. His kidneys took much less of a hit this time. His blood pH dropped initially following the high-dose chemo just like last time, but this time they were anticipating it, watching for it, and got it under control relatively quickly without needing to transfer him to the ICU for the concentrated continuous drip of sodium bicarbonate. He had a day where his blood pressure was too low due to extreme dehydration, so he received lots of fluids and gained 50 pounds of fluid in his tissues, but his kidneys went to work getting rid of it naturally and slowly without need for diuretic medication. He lost it all over the course of about 2 weeks, is back to a healthy weight, and is able to actually pick up his feet to walk without severe exertion now.
His kidneys will still need close monitoring in the future, but we don’t need to return for a visit with the kidney doctor for three months. He needs monthly bloodwork in the interim to keep an eye out for any major changes. And visits like that will be a one-night stay in the area, not weeks and months long. We can deal with that. We want to keep the kidney treatment with the same doctor who knows the history of his complicated course until things are more settled and predictable in that area.
What Now?
Mike was officially discharged today from his transplant and we’re driving HOME tomorrow! He has lots of work to do to regain strength and endurance, but the transplant part of things is over. He has to wait until early July for a follow-up PET scan at Duke to see how he responded, but we get to be HOME!! Just appointments down here every couple of months with a variety of “ologists” and his local oncologist will handle the more frequent labs and checkups. He no longer has to return to the bone-marrow transplant center and all further Duke cancer visits will be with his regular Duke oncologist. In other words, he graduated! He chose not to ring the bell because he said he’s rung a bell before and it didn’t mean anything. He promised he’d go back and ring the bell and have a parade around the treatment center after he sees a clear PET scan.
He still needs to avoid big crowds until around Day 100, but his blood counts are improving a bit more every time they’re drawn. His white counts (the part of your blood that fights infection) have stayed in the normal range since two weeks ago when he was discharged from the hospital stay, which is really good news. He has to get all new vaccines beginning at either 6 months or 12 months post-transplant and they’ve left that decision up to us. We’ll review the material and make that decision after we’ve slept . . . for about 6 weeks!
SCANxiety
Do you like that term? I learned it from other cancer warriors and caregivers. It perfectly describes what we’re feeling right now and will probably feel for the rest of Mike’s life. Every waiting period leading up to a scan will bring a fair amount of anxiety. We will wait 60(ish) days to see how this treatment worked. Then, he will have follow-up scans every three months for two years, then every six months for two years, then yearly afterwards. (I think I’m remembering that correctly.) That’s a whole life of waiting. We’re going to have to learn how to not let that rule our lives. How to live and not just survive from scan to scan. Pray for us about that, however the Lord leads you. I think this will be harder for me than for Mike. He’s so ready to put this in his rearview mirror that he will just do it. Me? I’m still waiting for the other shoe to drop and I’m not sure how not to feel that way.
Of course I know that everyone is praying for Mike’s health. And so many have reached out to me to see if I’m okay, given all I’ve faced the last year, especially. I need . . . I don’t know. I sat there for like five minutes trying to fill in the blank and couldn’t come up with an answer. I need a therapist; that’s priority one for me. I need to process all my grief and anxiety. I was never an anxious person until we started walking though this health crisis. I need sleep. Lots of sleep. I need hope. I’m not sure how to do that anymore. I need a maid and a cook so I can sleep for several days once we’re home. I need a dull, boring life again. I long for the biggest worry I have to once more be what to make for dinner—again—tonight. Most of all, I need Jesus, and lots of him. If it weren’t for Jesus, I wouldn’t be able to function.
Another thing that is constantly said to me is “I have no idea how you’re doing it all” or “handling everything” or _______ fill in the blank with a similar phrase. Then there are those who tell me “your strength inspires me” and I can’t help but chuckle inside, thinking if they only knew how not strong I am. I’m so weak. I’m so tired. If you’re seeing strength or composure, you’re not seeing me. You’re seeing Christ in me. The Spirit of the living God is living for me and through me because I don’t have the capacity within myself to even try to keep going, much less to succeed. If you’re tempted to give me credit for “handling it all,” I pray you see past me to the mysterious power of God working within me, because I don’t have it. I never had it. And I won’t have it anytime soon. But God has it all.
It’s my earnest prayer that the future holds great things for us—both of us—together. It’s my deepest desire that our boys get to see both their parents get old and we get an opportunity to spoil our grandchildren rotten. But we’re not guaranteed those things. Cancer teaches many lessons, and one of its biggest ones is that time is precious. Don’t waste it. Enjoy the people you have. Enjoy simple things and quiet moments. Appreciate people verbally now. Don’t just think nice things about others. Say them aloud! People need to know they’re appreciated, loved, wanted, and beautiful. If you see someone doing a good job in their ordinary work, compliment them. If you like someone’s hair, or outfit, or pleasant personality, tell them. If someone makes your day better, thank them right then and there, in the moment. You never know how much your kind words will uplift a person’s day. Time is precious. You may not get the opportunity to say it later, so say it now—with words. Most of all, tell the people you live with—you know, the ones who drive you crazy the most?—these things. They need to hear it.
I’m waxing philosophical now and that’s never good. I could ramble on about these things forever. This is what happens when I go too long without writing. If you’ve hung in there this long, thank you. You’re kind for indulging me. I’ll try to make it sooner next time.
