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
Always wear a helmet. Except when you’re taking your first rider on a ride. And you’re only going around the block. Or maybe a few blocks. And the rider is your mother, who willingly trusts you with her life. And your mother’s husband has face cancer. And she just needs to blow off some steam. Anyway, always wear a helmet.
A snapshot of my morning nonsequitur brain. Thinking about failing to a safe state. Can I model this for my students by plugging in a hot plate to a GFCI outlet and then throwing some water at at?…. I always loved the song “Open House” by Lou Reed. I’m going to pull it up on Spotify for my commute in. Something about Lou Reed sometimes choosing to sing, mostly not, sometimes squeezing in the lyrics between the rhythm and notes. The one breakout part at the end where he sings “fly me to the moon, fly me to the stars.” (The song works better laying in a dark room–I think it also works driving on an overcast day)….. I hope my daughter didn’t try riding her new motorcycle to work in the rain today …. I wonder if Matthew will walk home from school in the rain or decide not to go to speech and debate…I wonder if the Ride Health folks will drop Mark off somewhere I can find him at the hospital for his MRI today…should I stop and get gas on my way to work or on my way home?…I remember an old friend had a parenting blog for a while called ” Dining with Squirrels.” Maybe I can start a blog called “Inhabited by Squirrels”….cranially speaking.
Ever onward, D
After work today, I took Ben out to practice driving on busy and twisty roads. He did a great job of staying in the middle of the lane. He maybe needs to look up and see the traffic light ahead is red. Or yellow. Really, he should just look up. He went faster than he’s ever gone. At no point did I feel like I was going to die, although I did brace my entire body against the seat and the car frame. Twice.
When we got back, I checked my texts to find this photo and many smiley emojis. My dear child, 22 years young, with her first major purchase. I called immediately. Did you know you can get your motorcycle license without ever riding a motorcycle on a road? No? Me either. She stalled out a bunch of times driving it home, and learned that car drivers aren’t into that. She’s excited and happy, and uncertain and cautious.
I’m thinking about risk assessment. Years ago, Mark was talking to me about his engineering work and explained how a part of equipment design is to “fail to a safe state.” This always made a lot of sense to me. I liked the idea of life working this way.
This may be possible with machines. With a life?
Good friend keep encouraging me to keep it real. I by default am an optimist. I am an under-reacter, and slow to frustration or anger. So here’s a tale I can tell through the keeping-it-real lens. And real is, this is frickin’ hard in about 18 different ways.
I woke up at 6 am after a terrible sleep. I left at 6:05 am and picked up Mark from his senior living home at 6:20 am. He told me stories about him being 65 (off by 9 years) and other odd tales on the way to the hospital. CT scan, followed by neurosurgery appointment. All is fine. Except a little air in the brain (umm…what?). His surgeon was pleased that no cerebrospinal fluid had leaked from his nose (umm… did you mention that concern to us?). While waiting at the hospital, the short-term benefits org called Mark and after he couldn’t answer a couple questions, he fortunately was willing to pass the phone to me so I could make sure his short-term disability benefits are extended. Mark also explained that when he looks at me with his right eye, he sees a fuzzy grey blob. This is fairly accurate to how I feel.
Left the hospital and headed to the grocery store per Mark’s request so he could stock up his little (cooking-free) kitchen. We were back to his little apartment by 11 and napping by 11:05. At 11:30am, we wake up to a knock on the door by the intake nurse for the home-health team. Yes, he has blood pressure and a pulse and needs PT and OT. Oh, he has a 99.2F fever? Didn’t know that. Then, kiss goodbye and off to pick up Matthew early from school for a pediatrician apptointment. Then a phone call with neuropsychology about two appointments scheduled for October.
I talked to a dear friend who is going to call the oncology nurse navigator to follow up on a few things. Like getting free rides to cancer-related appointments from the American Cancer Society. And getting a more detailed pathology report to send to another oncology doc at Memorial Sloan-Kettering. She’s also going to try to find a mobile notary for me. That’s really helpful. I’m grateful.
I’m trying to find someone to be with Mark for his 10/4 chemo appointment. Striking out so far.
Plan for tomorrow – phone call with social security to start a disability claim process, check with his home to see if his transport is set for Wed’s ophthalmology, make sure my beloved folks know where to meet him, make sure Matthew has a ride home from Speech & Debate team and a ride to and from fencing. And work a full day.
“Hey Diane, how’s your week look?” Thanks for asking. Our station is tuned to Mark 24/7 still. In no particular order, he has a CT scan, MRI, blood test, opthamology appt, neurosurgery appt, home health nurse intake assessment, PT and OT. So, ya know, busy.
I had no idea how depleting being a caregive could be. You lose yourself of self very, very quickly. I’m so very grateful this morning for my amazing colleagues who two weekends ago whisked me away for an amazing 24 hours of great food, goofy magazines, a hike and a massage, hot tubs and hot springs, eavesdropping on weddings, and lots of laughter. How did I get so lucky?