Setbacks, Discouragement, and New Poop
We had another appointment at Duke earlier this week. Got slightly disappointing news, but it’s not unhopeful. Bottom line, we’re kicking the can down the curb just a little farther, inch by inch. We’re so very tired and ready for this season to pass. Despite our current discouragement, we are still choosing to believe that it is just that—a season. Not a life sentence.
First, The News From Duke
On Tuesday, Mike had a fresh PET scan, some bloodwork, and an in-person visit with Dr. Ramalingam at Duke. The PET showed a reduction in his tumors from the last cycle he received, but unfortunately, not enough for him to be ready for the stem cell transplant yet. This was, understandably, discouraging to hear.
This means that Mike will need two cycles of regular-dose chemotherapy before he goes into transplant. Then, along with the transplant, he’ll have two cycles of high-dose chemotherapy. All total, this equals about 3ish more months of treatment. to finally hit the finish line.
After everything we’ve faced this year, we had so hoped that he was just ready for transplant at this point. We were looking forward to turning the calendar over in January 2025 and starting off a new year freshly healthy. Based on the timeline, we will probably be looking at finishing sometime in mid-January.
Other Pressing Matters (New Poop)
My apologies for the squeamish amongst our readers, but we must talk about poop a lot in our home these days. If poop talk freaks you out, just scroll on down to the next section to see the rest of the update. For the strong-stomached of you, read on.
With all the gastrointestinal setbacks Mike has had due to chemo gut inflammation, it’s a regular conversation. Poop is important. It’s likely the most readily observable marker of health or disease. This is why your doctor is always asking you about your bowel movements and why, if you’ve ever spent any time in a hospital bed, the nurses seem alarmingly obsessed with your poop. I thought I’d spend this section of the update explaining the importance of good poop. Because if you’ve ever experienced bad gastrointestinal symptoms, you’ll understand the great need for the normalizing of poop conversations.
Mike has gotten recurrent infections with a nasty bacteria called c.difficile (c. diff, for short). I won’t go into all the gory details of the symptoms involved with this particular infection, but suffice it to say, it’s worse than any stomach virus you’ve ever had. This particular bacteria is something we all have in our guts, but when you’ve been on multiple IV antibiotics and have had all your good gut bacteria killed off, c. diff is an opportunist bad bacteria that then takes over and wreaks havoc in your intestines, causing major inflammation, pain, and a host of other symptoms. This bacteria can live on surfaces and survive every chemical but bleach. You know how your beloved Clorox wipes say “kills 99.9% of germs and viruses”? Well, c. diff is that 0.01% they’re talking about.
Thankfully, Mike hasn’t gotten symptoms as bad as they can be, and because he’s a cancer patient and so closely monitored, it’s usually caught early. The standard treatment is . . . antibiotics. Strange, right? Antibiotics cause it, then you’re given antibiotics of an even stronger category to treat it. There’s only one antibiotic that can treat it and it’s not often super effective long-term. Enter, the fecal matter transplant.
Yes, that’s right, folks. It’s a poop transplant. Betcha didn’t even know something like that existed, did you? The things you learn when you’re going through a critical illness! As I type right now, Mike is getting a poop transplant. Hang with me, here. If you can get past the ick factor, it’s actually a very effective treatment for recurrent c. diff with a 90% success rate for no return of infection, ever. But here’s the thing . . . it also just generally repopulates the gut with good bacteria and treats anything that could be affected by bad gut health. Fecal matter transplants work by reintroducing good gut bacteria into a bad gut that otherwise can’t seem to repopulate itself. He would have to take probiotics for years to gain the good bacteria he can receive in this one procedure. So, we’re incredibly hopeful that this will not only stop the recurrent c. diff infections, but also work to improve his overall gut health for future chemo treatments. This treatment has been championed by every oncology doctor on Mike’s team, bot locally and at Duke. They know how effective it is and think he’s a perfect candidate for it.
Future Cancer Treatment Plans
I had to tell you about his gut health to explain the current delay in Mike’s cancer treatments. He has to have time to recover from this very unique sort of transplant to be ready for the more familiar type of transplant. So, his preparatory (standard-dose) chemotherapy is scheduled to begin in late October. Those treatments will be outpatient at Duke and he will be receiving the GemOx regimen this time. He will only have to receive treatments on Days 1 and 8 of a 21-day cycle, then have two weeks of recovery/rest time between the two cycles.
This means a LOT of traveling back and forth to North Carolina. We’re not sure yet how we’re going to work everything out logistically with Mom also receiving treatments, but we have a wonderful tribe of supporters that will help us make all this happen. Just please pray. This is quite a bit of stress for me, personally to orchestrate everything. All the coordinating of schedules is why it’s taken me this long to even update you.
Mom’s Also in the Hospital Right Now
On Monday, about one and a half hours into our trip to North Carolina, I got a call from my brother saying he was taking Mom to the emergency room. She’d been having trouble swallowing for the last couple days and she had gotten to the point that she could no longer swallow food or pills. She just also had a procedure today that should fix things up, but this has gotten long enough and her story requires its own update. I will type that one up tonight and post it tomorrow. Stay tuned for that!
Why?
I was taught when I was younger that it was sinful to ask God why because it questioned God’s authority and sovereignty. That’s bad theology. I have asked God why more times this year than ever before in my life and it has brought me closer to my Lord, not pushed me further away. God isn’t scared by or angry at our questions. To the contrary, God welcomes our questions just as much as our praises and petitions.
I’ve been asking God why a lot the last several weeks. I’m weary and worn. I’m, honestly, tired of trying to hold out hope for miracles. I’m thankful for the prayers of the saints who are filling in my faithless gaps with their own faith, because I just don’t have it in me to enter into deep, focused prayer right now. Oh, I pray constantly, but that whole picture of a serene quiet time with dedicated moments for subdued prayers is a time luxury I can’t afford. My days start with petitions begging and sometimes the amen doesn’t even get spoken because I fall asleep pass out too fast to finish.
I don’t understand why God keeps allowing one more hard thing after another to come our way. I don’t like it. I want to escape it, but there’s no escape hatch. I want to run, but I’m not very athletic. I want to hide, but the bad news seems to have a way of finding me, like I’m a beacon drawing a lost ship. I hate this season. I want it over with. I want normal again. But I’ve learned normal has gotten a new definition. Normal will never be normal again.
As I lament all this to God throughout my days, I wonder if I even have a morsel of faith to chew on any longer. But, who else would I turn to? God is all there is for me. God is the beginning and the end and knows the end from the beginning. God holds all things together when I can’t even hold onto my faith, much less my hope. Who else is there that can see all and work it out? Where else would I go? So, once again, I take my tiny little smaller-than-a-mustard-seed grain of faith and hold it up, begging God to make it into a bush. Because God is it for me. Full Stop. End of story. I know no other who can set the world spinning and stop it again. As I close this rambling, chatty update, I hold my tiny piece of faith up for God to make big one more time, and I rest in Christ. Because, who else is there?
