Living and loving life (most days), despite SNUC (Sinonasal Undifferentiated Carcinoma)
Mark is asleep in the hotel bed next to me. I’m doing a little evening reading, continuing in my quest to understand what the heck is happening to my guy.
When you start reading this kind of stuff on Friday night, it’s time to go to bed.
Are they though?
Day 1 in Houston ends with a lovely time at the hotel bar with Cathy and Joe from Louisiana. Everyone here seems to be here for medical treatment, making it an odd club to be a part of. They are no exception. In between some wine and beer, we learned about gumbo and why Lafayette is the better place to go for Marti Gras and integration in the 60s and 70s and why Trump is their man. At some point, Joe snuck out for a cigar. We ended with a warm hug and Mark and I being added to their prayer list. Tomorrow, I think I will have the sausage gravy at the hospital cafeteria. Where, by the way, I saw a poster advertising their Bowel Management Class. The South. Here we are.
We’ve fallen down the rabbit hole to a place where everyone has cancer and every station at the hospital cafeteria has sausage gravy.
I don’t mean to brag, but it’s pretty awesome to be sitting at the airport. We have books to read, it smells like Cinnabon, and it feels exotic to be flying to Texas. I want a cowboy hat, cowboy boots, a big truck and some barbeque. Go big or go home.
Home again home again jiggity-jig, Take 2: Mark had two tonic-clonic serious seizures this morning. I’ve never seen a grand mal seizure before. I can only describe it as it felt: like watching someone get electrocuted. One minute he was fine, the next minute he was on the kitchen floor, breathing in a strange and mechanical way, curled in the fetal position.
Next, the whole nine yards: freaked out wife, petrified kid, police, EMTs, hero-of-a-neighbor, sirens, weaving in and out of traffic on a high speed endless ambulance trip to the hospital. The ambulance driver telling me things would be okay, unconvincingly, as he cursed at drivers that were not getting out of his way, and as I listened to that strange mechanical breathing behind me.
We are back home now. Mark is asleep, drained from whatever his brain did today. CT scan looked okay, meaning there was nothing acute to treat. They added a second anti-seizure med to his long list of meds. Hopefully this adjustment will reduce the chance of more seizures. A long, long day that relative to the last couple months wasn’t technically that long. But so felt it.
Still headed for Houston Wednesday. The neurologist cleared him for travel. A wing and a prayer.
I’ve been so overwhelmed by the emotions and logistics of trying to get to MD Anderson that I failed to mention a major thing that keeps the person at the center of this in the center. Mark is coming home. He’s been in a medical or therapeutic setting since August 6. It’s no small thing for him that he’s coming home. It’s no small thing for me or the boys, either. I can’t say I’m not scared. I am. It’s both wonderful to think that he’ll be home, and intimidating. He’s going to be where he wants to be — in his house, with his family. We are going to get more time with him in all the little ways that living with someone gives you. At the same time, I am going to add into my current roles a few more. Medicines and transport and a few worries about his safety. He is both independent and in some ways not. He’s himself and yet in many ways so very vulnerable. The appt with the radiation oncologist on Tuesday really challenged me with the big questions: what is life? What gives life quality? For Mark, quality is to be home with his children, in his own bed, in a life that he can recognize. And for me, my best shot at being the best human I can be is to be his partner and help him be where he needs to be, with the people he loves, for as long as possible.
Well I can’t believe it, but we’re headed for MD Anderson next week. (“Houston, we have a problem!”) Mark’s willing to go, which is a miracle unto itself. We’ll be there for a full week and Mark will see about a bazillion specialists and get many tests. Not sure if this is a hail Mary or the next logical thing. Going for it anyway.
One day, so much information. First, let me say that radiating the head and neck doesn’t sound like a whole lotta fun. Second, I never thought some more surgery to the head would sound like a great option, but now it does. Third, suddenly it seems like flying to MD Anderson in Houston might be a great idea.
What I’ve learned today is that the kind of radiation treatment that Mark is lined up for is the kind that fries all the tissue on the way to the tumor, and all the tissue on the way out of the body. Which is to say, a lot of potential collateral damage in an area that can afford approximately none. Optical nerves, auditory nerves, temporal lobe, salivary glands — dosing Mark’s tumor means, even with the best of aim and the best of success, that all these things can also get some dosage. A radiation oncologist with not a lot of bedside manner delivered this stark facts. Mark could have permanent damage to some things, and will likely have permanent damage to others.
Mark’s sister started searching for places to go for second opinions. Was the diagnosis correct? Could genetic testing help at all? Would another surgery reduce the potential damage? Is proton radiation therapy an option? She started down the path of dialogue with Memorial Sloan-Kettering, and then followed the path to MD Anderson in Houston. MD Anderson, from all our research, is the hospital in the US with the most experience with SNUC. Since the cancer is rare, there’s no definitive treatment protocol. The most recent published articles are from MD Anderson. Could we go there? Was Mark strong enough to travel? How fast could we get in there? Would it compromise Mark’s health to take the time to pursue this option?
Dear Hilly, Do you remember how Pavel would say, “We are always doing our best. Sometimes it’s our shitty best, but we are always doing our best.” So we try so hard to take care of things we love. People, birds, all the things. Including ourselves. Sometimes we do a great job, and sometimes despite all our best efforts, things go wrong. Birds die, people get cancer, we do cartwheels trying to make it all work and we juggle to keep everything that needs to move forward moving forward. I’m reminded of that everyday. And I’m grateful for the energy that that effort takes, and I try to forgive myself when it falls apart. I love you, Diane
