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.
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
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.
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.
It’s too early in the morning, or maybe too late at night. I’m awake, thinking of too many things. It’s been a good trip, with very little to show for it so far. In MD Anderson, Mark flew through a blur of appts with an ENT surgeon, oral oncologist, medical oncologist, and radiation oncologist. He was probed and tests: CT, PET, MRI, X-ray, nasal probe and blood work. We don’t have any results yet. The tumor board meets on Thursday night, and we’ll get a call after that. The docs will give us their prognosis and next steps for developing a treatment protocol. We’ll then have to decide if we uproot our lives and consider treatment at MD Anderson or some other major hospital, or stay put at home and get treatment there.
Mark’s appointments spanned two weeks, and so we took off on Friday night to head to Galveston. Mark was very tired. We stopped for lunch in the historic distric, went into a used bookstore, and then found our Airbnb, climbed the stairs to the second floor unit, and crashed for naps.
The next morning, Mark had another seizure. I keep my eye on him all the time, to the point of my own exhaustion, because I am afraid of so many things. He’ll be confused and disoriented. He’ll trip and fall. He’ll get lost. But I convinced myself to give myself a little break. Mark was asleep on the couch, and I propped open the door to the deck and sat outside in the sun to read. Within 10 minutes, I heard a crash. I ran in to find Mark flat on his back, unconscious on the hardwood floor. I grabbed my phone and called 911. “What’s your address, m’am?” the dispatcher calmly asked. “Can’t you trace my call from my phone?” I asked. I had no idea what the address of the house was, as I had just plugged it into GPS and followed the nice voice that led me here. “No, we can’t trace cell phones with that kind of accuracy.” Note to self. I had to leave Mark, run down the stairs and out to the sidewalk to look at the address on the house, and then run back upstairs.
That’s the third seizure in one week. These movie-scene kind of seizures are not my favorite. Accolades to the Galveston fire department and EMS, who got to us very quickly. I can report that the ER at University of Texas is more chill than our trauma hospital back home. Their neurologist said the CT scan looked okay, and added another med and sent us on our way. Mark slept most of the next day, and he was in a fairly confused state for a while. He doesn’t remember any of it. (I do. Again, not a fan.) He’s back to a more normal baseline now, thankfully.
Now we’re back in Houston at MD Anderson. Mark had one final appt today. It’s strange to be in the MD Anderson orbit. Everyone here has cancer, or is worried about someone who has cancer. It’s both a comfort somehow, and a little too much. We rode the hotel elevator four times yesterday, and each time a stranger made some small talk with a lot of (correct) assumptions. “When’s your call time tomorrow?” = I know one of you has cancer and you’re headed to the hospital tomorrow. Last Thursday night, we whooped it up (okay, they were really fun people) in the hotel bar with a couple from Louisiana who were back for an annual scan. The subtext to all conversations with everyone from Lyft drivers to hotel restaurant staff is I know you’re worried, I get it, I’ve been there, life is throwing a curve, let’s be kind to each other and try to make the best of today.
Speaking of making the best of today, my dear brother Scott and wife Karen and doggo Molly drove from Dallas to Galveston on Sunday to visit with us. A generous thing to do, as it’s 5 hours away and they were only with us for 24 hours. Even more generous in that Scott had emergency surgery on his leg on Friday morning after smooshing it in a motorcycle accident. (As they say, the motorcycle won.) Family. So great.
Will it be good to be home? Yes. Not restful week though. Mark has his gigantic 8 hour chemo day followed by two days of chemo at 3 hours each. Also being squeezed in there is a neuropsych appt. And of course, waiting to hear the MD Anderson news.
I’m going to make myself a cup of coffee. Ever onward, Diane
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.
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.
Today I met Mark — he arrived via transport provided by the skilled nursing facility — at the hospital for his outpatient medical oncology appointment to prep for round two of chemo next week. (Did you know that you have to add a descriptive word in front of the word “oncologist?” Me either. Mark has to see a radiation oncologist, medical oncologist, and dental oncologist).
We also met with neurosurgeon who rounded on Mark when he was inpatient. I asked a lot of questions. The more I learn, the more questions I have. I learned a few more things today. So on the one month anniversary of his surgery, I thought I’d give a brief recap and include more details now that I’m more knowledgeable. Keep in mind that that’s not very knowledgeable, relative to what I now deeply understand about the massive complexity of the human body.
Mark’s tumor started in his sinus, so it’s considered a sinus cancer. From there it marched through his skull and into his brain cavity. I say brain cavity rather than brain because it didn’t make little roadways into his brain, it just grew in the space normally reserved in our skull for only BRAIN. So imagine something wedged into your head like, say, a baseball, where there was no room for a baseball per se.
When did it start? We don’t know. It’s an aggressive cancer so it’s hard to say. I spend an unnecessary amount of time trying to recall the signs of this coming. We’ll never know when it began.
I learned many more details about the surgery, and you can ask me if you’re into learning about brain surgery. As a science teacher and a generally curious person, I am. And learn I did. Let’s just say that Mark will probably need to carry a card that says “body contains metal.” Which is kinda cool, if you think about it in a space odyssey kind-of-way. If you think about as someone who mostly likes life to make predictable sense, it’s a bit more challenging. And yes, I went home and watched a YouTube video of a bilateral craniotomy. I suggest caution if you choose to do this.
The tumor, in addition to exploring his eye orbitals and sinuses, pressed into his prefrontal cortex and eventually caused swelling of his brain. The prefrontal cortex does a few important jobs for us, and when it gets fussed with it can lead to some problems. These include impaired judgement, memory loss, reduced motor skills and spatial reasoning (see our van as evidence), inability to understand/interpret social cues, impaired language skills, loss of empathetic reasoning, reduced impulse control.
Given all that, one month into the repair effort on this problem, Mark is doing remarkably well. He’s quite agile, but not yet consistently so. He’s regaining memory, but not yet consistently so. He’s apt to suddenly make decisions, some good (used a wheelchair at the hospital today! Yay!) and some not (suddenly standing up to get out of the wheelchair and stumbling before nearby hands catch him). He’s good with some numbers (Yay! I now know how to check messages on the house phone!), and not with others (being at the hospital from 1:15 – 3:15 pm is two hours. I’m pretty sure. I’m tired, but I’m pretty confident on that one). The docs say, and I understand and agree with them, that we just have to wait and see. Mark has to do the work — OT, PT, speech, chemo, radiation — but we have to wait and see.
So today I waited. 4 hours at the hospital today = 4 hours getting to talk with Mark, hold his hand, rest my head on his shoulder. We found things to laugh about. He teased me and I teased him back. He drank a diet ginger ale even though he’s skinny as a rail. I got him to eat some peanut butter and crackers. He wheeled himself along stubbornly until he got tired of running into walls, and then I stepped in and straightened his path. I’m reminded of this Bible verse: two are better than one… if either of them falls down, one can help the other up. And so, together we keep going. Ever onward, D.