Great News!

Early on in this cancer journey, things were chaotic and changed everyday. I tried to keep family and friends in the loop by sending group texts and posting on Facebook. Often, I thought I was providing information that carefully conveyed the precarious hold Mark had on life. “Mark’s out of surgery and is on a ventilator.” “Great news!” I’d get back from people. In confusion, I’d go back and re-read what I wrote. Did that somehow sound great? Because to me it was terrible. I read VENTILATOR and they read OUT OF SURGERY. “Mark’s urine output is good.” I read between my lines “HE’S GOT A CATHETER AND CAN’T STAND UP” and they read “GOOD.” “Mark’s strapped down because he keeps trying to pull out his IV.” Me: “HE’S OUT OF HIS MIND!” Them: “HE’S SAFE!” Chipper “great news!” texts and comments started to crack me up, in the way that you get really loopy when you are exhausted and stressed beyond any reasonable level. My friend Kim and I started joking about this a lot. I’d text her something like “Mark’s eye is no longer bulging” and she’d reply “Great news!” when really, the fact that it was ever buldging was still a horror burned into my mind.

And so in that spirit, I share that today Mark reached the 30 lbs lost mark since all this started. Between last week and this week, he’s lost 3 lbs. This is despite my amazing shakes, including my most recent triumph of getting him to drink a shake made of Ensure, Boost, PB2 powder, frozen cheeries, a banana, and a Dunkin Donut Munchkin. I told him about his weight loss today, as I offered him an Ensure that he declined, and he said “well, that’s better than gaining weight.” NO, IT’S NOT! It’s not great news! Sigh.

2019 Made Me Tired

I’ve stayed quiet on Mark reports out of respect for the holidays. We have had many happy moments with the kids, and so much good food. The tree was the best it’s ever been, we have this adorable rental dog, as I affectionately call her and as you have perhaps seen, to distract us. Now the Pittsburgh grey skies have set in to hold us captive til about April. Mark is on week 4 of radiation. He just completed another 11 hour day of radiation and chemo yesterday. The side effects are setting in on schedule. He is exhausted and a tad confused. He’s having a harder time swallowing. That’s because the radiation zaps the salivary glands and makes his saliva thicker as well as reduced. His vision in his right eye is declining again. That’s because that pesky tumor is hanging out right by his right optic nerve, and even the fanciest of radiation machines and the most skilled of docs and technicians can’t dose the tumor and not the nerve. He’s having a harder time hearing. That’s because the chemo drug, cisplatin, can accumulate in the ears. To try to move more carefully down the rabbit hole of hearing loss, we are switching him to once a week smaller doses of cisplatin rather than a whopper dose once every three weeks. That means more 11 hour days at the hospital, but keeping a more careful eye on his hearing. He has no appetite, and while I am getting pretty good at sneaking calories in (if I offer you a shake, unless you want it made with high calorie Ensure, PB 2 powder, and half and half, you should decline), he’s still losing weight. That’s because the radiation causes enough cellular havoc that his calorie needs are even higher than normal. He’s cold all the time, and all his Christmas presents were about heat. Electric blanket, hot packs, neck warmer, portable heater. The more uncomfortable Mark gets, the less easy of a patient he becomes. Sometimes the only person that can get him to take his meds is Michael. It makes me worried for Michael as scenes like last night’s play out, with Mark very confused and refusing his meds and Michael and I together having to figure out how to convince Mark to take them. That’s a lot for a 19 year old kid. All these facts lead to one obvious conclusion: things are hard, and they are going to stay hard for a while. Maybe all of the grey sky season. All we can do is accept it and keep going. One foot in front of the other. Ever onward, Diane

Rad isn’t Rad

Well gosh darn it, the route to wellness keeps changing. We thought that surgical resection was possible, and that would be preferrable. Instead, the new team (neurosurgeon, ENT surgeon, and medical oncologist) report that the scans show that the risk benefit ratio doesn’t work out in Mark’s favor to consider surgery at this time. The tumor is too close to the optic nerve and to the carotid artery. That’s a major blood vessels that supplies blood to his head, neck, and face. Kina want to keep that one intact.

So zap the heck out of the tumor it is. Mark’s radiation starts on December 9. Five days per week for six weeks, they will deliver to the tumor the highest dose of radiation that is tolerable using IMRT (Intesity-Modulated Radiation Therapy). They start with creating a mask. Picture a fencing mask filled with tiny holes and made of plastic that can be molded to exactly fit Mark’s head. Every time Mark goes for radiation, Mark will lie on a table and they will put him in the mask, fix the mask onto the table to keep Mark completely immobile, and then roll him into the machine. The radiation machine can deliver radiation the conforms to the shape of the tumor, with the radiation technician watching a realtime scan of Mark’s skull while administering the treatment.

To keep the tumor on it’s toes, Mark will also get the highest dose of chemo possible every three weeks. These chemo treatments will start with a blood test to make sure everything’s going okay, and then fluids to keep his kidneys healthy, and then anti-nausea meds, and then the chemo followed by a chaser of one more bag of fluids.

The side effects are daunting. The chemo brings the usual crapping stuff: nausea, fatigue, loss of taste, poor appetite, and just for some variety, the potential for hearing loss as this chemo drug can accumulate in your ears. The radiation is next level. In no particular order, it can include possible loss of vision, more hearing loss, fatigue, loss of salivary gland function, difficulty swallowing, weight loss, possible feeding tube if he can’t keep up his weight, open wounds in the mouth, tooth decay, bone loss in jaw.

I’ve never climbed a big mountain. I think I’m about to. Mark is embarking on six weeks of truly unimaginable challenge. He needs prayers. We will need support. The former, we know that all you caring, loving friends and family will give. We are grateful for life every day. Mark is fighting. Stay with us.

Epilepsy – We are Now Aware

I’ve joined a number of Facebook groups over the course of this year. You can track my year, and Mark’s health year, by them. In February, I joined one for people with a spouse with a chronic illness. In August, I joined one for people with cancer and their caregivers. Then another, for people with SNUC and their spouses. In October, I joined one for people with epilepsy and their loved ones. I have to say, with all the challenges people write about in all these groups, perhaps the group that expresses the greatest level of stress, anxiety, depression, fear, and hopelessness is the epilepsy group. So I’m sharing a post from there here, as a public service announcement to let yinz know that folks with seizures really, really struggle. They are often lonely and isolated. They’ve lost their jobs, their independence, and their sense of safety in their own bodies. November is epilepsy awareness month. Shout out to all those with seizures. You are fighting a hard battle. I hear you.

Random things from today

1. We are jumping ship from one hospital to another for Mark’s radiation oncology. Zapping his head with radiation just seems like too sensitive of a thing to not go with a team that solely focuses on head and neck cancers. I don’t love the idea of starting over with a new place and new people and systems to learn, but it’s gotta be done.
2. The radiation oncologist doctor talked to their ENT surgeon, who thinks that he may be able to surgically resect the tumor. Stay tuned. Waiting for a phone call from the surgeon.
3. Mark goes to sleep every night by 7 pm. You’d think this would give me some time to myself, but I seem highly capable of filling it with meaningless activities and then falling asleep by 9 pm.
4. Mark’s caregiver was here from 6:30-2 today, and then his friend Kevin came from 2-5:30. This left me a one hour window after work and before I had to be home. A rare hour for me! I used it well. Found a parking spot at the mall and crawled into the back seat and slept. It was great!
Ever onward, D.

The South

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.

Coming Home

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.

Hail Mary

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.

Second Opinions

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?


“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.