Greetings, fiends — I have a tiny little setback to report today. It’s not really a setback, per se, but rather a bump in the road. We shall overcome.

Turns out we will not qualify for the Keytruda study after all. From their site:

Keytruda is a prescription medicine used to treat non–small cell lung cancer (NSCLC). Keytruda may be used as your first treatment option when your lung cancer has spread (advanced NSCLC) and tests positive for “PD-L1” and your tumor does not have an abnormal “EGFR” or “ALK” gene.

Michael meets two of the three requirements. He has advanced NSCLC, and his tumors do not have the abnormal genes. He did, however, test negative for PD-L1. Unfortunately, all three qualifiers must be in place in order to proceed. So, we do full-on chemo. A bit of a bummer, but that’s OK. It doesn’t dilute his resolve, or mine.

We joked a bit over coffee this morning about him losing his hair and the mustache he’s had since 1976. Our grandchildren won’t recognize him. Kidding…everyone will be fine with it. Fellow RtB citizen Stoney recently went through a repeat bout of chemo, and lost her locks. She’s on the rebound now, looking cute with her short, wavy style. I’m sure the Thriller will regrow his handlebar in due time.

Another update: I asked his oncologist if doing treatments in Mansfield would allow him to remain Michael’s primary physician. He said no, that a colleague would take over his care. Not happening. Not that there aren’t good doctors in Mansfield, but this guy is fantastic, and we like and trust him. Hence, we’ll go to Cleveland for treatments. It’s every 20 days or so, and he has his new wheels, so it’s pretty much a no-brainer.

This is the first time Michael has gone to Cleveland without me. I’m kind of ooky about it, but he assured me he will pull over quickly in the event of any coughing/choking fits. (I didn’t go with him today because we couldn’t be sure I’d be back in time for an out-of-town performance at 5 p.m.)

I think that’s it for this morning — thank you again for coming along on this odyssey with us.

#teamthriller

…at least for a while.

Yesterday’s gamma knife procedure went very well! Michael’s main anxiety about it all was his inability to lie flat for any length of time. As we feared, the MRI didn’t fly. So they did a CT scan instead, and we were off and running.

“You’ve never looked more lovely.” — Mavis

It’s a peculiar device, this frame, and not without discomfort. But the Thriller cooperated with good humor and a positive attitude. I can’t say enough about the staff at the CC Cancer Center. Not only did we not have to wait to get things rolling (they ushered him right in at check-in, and came to get me a few minutes later), but they were beyond attentive to his every need.

Once they scanned his brain, he was free to eat and drink — something that was a bit tricky. I went to the cafeteria and bought a banana, but seeing as how he couldn’t feed himself normally with the frame on, I had to break it up in little pieces. We also got creative with his coffee.

Before his procedure, one of the four frame pin sites got pretty ouchy for him (click here if you’re not ooky about blood), which was somewhat of a big deal, given that his pain tolerance is quite high. When he complains, you know it’s bad. He wasn’t going to say anything, but that’s why God made Rat Fink. As soon as I informed our nurse that he was in some discomfort, she was back within a minute or two with a syringe full of Lidocaine and two Percocet. Is that service or what?

He took all the meds without protest, and I think they really helped him through it.

It was all over with in a few hours, and they sent us home with steroids (to minimize risk of brain swelling) and instructions for incision care. He didn’t sleep well for the aching head last night, but when I took his bandages off this morning, the wounds looked much improved. He goes back in 5-6 weeks for another brain scan to see how much the tumors have shrunk. I hope they all went to Jesus quickly, never to return.

We start chemotherapy on the 7th. We’ll do the first one in Cleveland, then maybe arrange for a closer location for subsequent treatments. We should also hear back from the DNA people about the likelihood of Michael’s involvement in the Keytruda clinical trial. Waiting, waiting and more waiting. Still, one hurdle has been jumped with this gamma knife business. Now onto killing the junk in his lungs and lymph nodes. Release the Kraken.

Much love
RF
#teamthriller

Finally…

The doctor called me just as Mavis and I pulled into the school parking lot yesterday afternoon. He gave me the final analysis on all Michael’s lab work, and confirmed that he tested negative for the mutations that would render chemotherapy unnecessary at the get-go. Bummer, but it’s what was expected after the initial findings. Onward.

We report to Cleveland this Thursday at 8 a.m. to prepare for the gamma knife surgery. Here’s how it plays out:

1. Frame. After admission to outpatient surgery and putting on the umpteenth lovely Cleveland Clinic patient gown, a lightweight titanium frame will be affixed to his head.
2. MRI. Since he is almost completely unable to lie flat for more than a few seconds, there could be another route we have to take in order to get pictures of his brain. (When he’s flat on his back, his airway shuts off, due to the paralyzed vocal cord making it impossible to sufficiently clear his throat of the junk that his COPD produces on a constant basis. He chokes and coughs uncontrollably at that point.) If they can’t do the MRI, they’ll settle for a CT scan, although they’ve said they prefer the clearer images on MRI. Whatever happens, we’ll take the best that both he and various feelgood drugs can give.
3. Wait. After imaging determines the exact locations of the tumors, they have to feed all the information into their software and allow it time to come up with the “plan” to specifically target those areas during the procedure. This takes hours, so he’ll have a private room where he can nap, watch TV, or engage in snappy repartee with his life mate.
4. Procedure. He’ll be positioned on the gamma knife table and placed inside the machine. He’ll be on his back, yes, but the neurologist said they can take as many breaks as he needs. I’m hoping the meds they give him will calm any anxiety, but when you can’t breathe, nothing else really matters, does it…

After the gamma knife, he has a week to wait, then he begins chemo. I knew we’d be making a lot of trips to Cleveland, and many would take place after I go back to school. I wanted Michael to have a dependable car to take to his treatments in my absence, so Mavis and I went to Columbus and picked out a nice one for him. It brought a big, proud smile to his face, which made the all-day test drive/finagling session totally worth it:

The Thrillermobile

More updates coming soon. Let’s get this thing underway! #teamthriller

We hit the road for Cleveland yesterday morning at 9:15, arriving a little late to our appointment with the radiologic oncologist. No worries, though; after being shuffled back and forth from one floor to another, we finally connected with him and he laid out an initial plan for the next week or so.

I’m glad we saw him first, as some of what he said was hard to hear. The initial reaction to the pathology from our primary oncologist was that at first glance, Michael has a small brain tumor. According to the radiologic oncologist who examined the imaging in greater detail, there are three tumors in his brain. “At least three,” to be specific. We asked some questions about the planned gamma knife radiation surgery, and discussed other options as well. It was decided that gamma knife was the preferred procedure (as opposed to brain surgery or whole-brain radiation), as it is minimally invasive and doesn’t carry the more dramatic side-effects of whole brain radiation, such as memory loss, hair loss, and vision issues.

While this doctor pulled no punches with regard to the stage of Michael’s disease, he was confident that they could zap these tumors — or at least shrink them — with the gamma knife.

Then it was on to see the neurologist who’ll perform the procedure. He walked in the room, and it was like a performance. Energetic, friendly, funny guy, and definitely not what we were expecting! I fought the urge to giggle at his likeness to Eugene Levy, so I snapped a surreptitious photo for later sharing. haha

He had us both laughing and feeling a bit more at ease, and we appreciated that.

Bottom line with both doctors was that we can’t move forward with chemo for the lung cancer until the brain issue is sorted. I confess it’s been frustrating that we are now 23 days out from his diagnosis, and he has received not one single treatment. This patience thing, lemmetellya…good thing we both already have a head full of silver hair. We’re keen to get this train moving.

All was said and done by 3:00, and we were both mentally exhausted and starving. We stopped to pick up dinner at Chipotle in Brunswick, took it home and wolfed it down. Then our new sleeper sofa arrived, and here was baby boy to the rescue, schlepping it around and assembling it at 9:30 p.m. after he’d worked all day. He’s a good son.

Today, we travel to Columbus to see about getting Michael a car to take to treatments once school starts. He may not always feel like driving, so Mavis has graciously consented to take him to Cleveland when I can’t go with him, which is a great comfort. I cannot overstate my appreciation and love for my family members who have flown to our side, both physically and otherwise. I know it’s hard on four of Michael’s children who live in Texas, but they’re in contact with us every single day, and we’re all discussing a visit soon, which brings their father and me great joy.

And speaking of comfort and joy, have I thanked you all for praying for him and for our family? A friend texted yesterday and wanted to know how Michael was doing, but admitted to being reticent to ask because “everyone is probably asking you the same questions.” On the contrary, I will never tire of talking about his bravery, humor and grace in the face of this vicious disease.

More updates soon! Thanks again for coming along on this journey with us.

#teamthriller

It’s kind of a blur to me now, this quiet meeting between three people in a sterile, bright hospital room on the first of June. I have a good recollection of the conversation until the doctor spoke the words stage four adenocarcinoma; after that, she was sort of a disembodied, floating, talking head.

Since that day, we have blown through sixteen different emotions, ranging from resolute to terrified. I’d be lying if I said I wasn’t experiencing “caregiver guilt” on some level; I half expected my hopeful talk to be greeted with something like, “Sure, you can be a cheerleader; it’s not happening to you.” Of course, I never heard that, and never will, because the Thriller isn’t built that way. Still, it’s the mosquito buzzing around the back of my brain. I need to work on that.

So to begin my chronicle of this journey, I’ll start at, well…the beginning.

Summer 2016

Over the last year or so, Michael’s health began a downhill slide, specifically with regard to his breathing issues. All along the way, we both thought it was part of his progressing emphysema: the rough coughing, some shortness of breath, decreased appetite, general malaise. By late winter, he’d lost over 20 lbs. in several weeks. In retrospect, I am horrified that I never once suspected cancer as the underlying cause, but I was focused on his COPD to the exclusion of all else.

Then all of his activities stopped. Things he loved to do, like yard work and taking care of our dogs and cars, were too much for him physically. One by one, his routine chores fell by the wayside. I’d come home from school and find him sitting forward in his easy chair with his elbows on his knees and head hanging forward, just struggling to breathe. It was around that time that I noticed a huge air leak in the sound of his voice, as if his vocal folds weren’t fitting together properly in order to vibrate. He is a chronic sinusitis sufferer, so we decided he needed to see an ENT to find out what was causing his constant coughing issues and hoarse voice.

The ENT examined him and noticed his left vocal fold was paralyzed, and said the nerve controlling it was likely being impinged upon by something. Then he made a startling request: Michael needed to see a pulmonologist. That was the day (4 April, 2017) that I started to really worry that something was seriously wrong (as if emphysema wasn’t “serious” enough). We selected a lung doctor at random from the Cleveland Clinic website, and finally got in to see him on 31 May.

We met with him for maybe 3-4 minutes, max. He looked at the CT scan the ENT had ordered, and informed us that the next stop we make should not be home, but rather the emergency room. We were gobsmacked. This total stranger, in three minutes, had already dropped the word. It looks like you may have cancer of the throat. We were speechless and in shock. Then I flew into mother bird mode, and wanted to get him out of there and to somewhere safe. We thanked the doctor and walked to the parking lot. In the car, I frantically searched on my phone for the address of the Cleveland Clinic ER, while simultaneously fighting the pressing, selfish urge to have a complete meltdown right in front of the person who’d just received the most devastating news of his life. I found some calm and started driving.

Twenty or so minutes later, we arrived. I dropped Michael at the door and parked. Inside, I found him in the processing office and on his way to a room. For the next seven hours, we waited. Test after test later, the attending ER doctor came in and shut the door. He broke it to us as gently as he could that all tests pointed towards cancer — but of the lungs, not the throat. The mass in the back of his throat turned out to be polyps — but I am grateful for those polyps, because had the pulmonologist not mistaken them for a tumor at first glance, I’m not sure where we’d be right now.

Stage IV lung cancer is no minor affliction; there is no cure, and as it’s the most advanced stage, surgery and other curative measures are off the table. We know we’re in for a fight. But we have a fantastic, supportive, loving family, and incredible friends and colleagues who are praying and sending all kinds of positive energy our way. We really like our oncologist at the Cleveland Clinic, and the Thriller is getting the best care in the country. His attitude is 100% “can do,” and even though he continues to suffer physically, his mental state and focus on healing are outstanding. On many occasions, he has comforted me when I have a breakdown about how unfair this is to him. How screwed up is that??

Anyway, our hope is high and our resolve granite; we plan to beat this cancer down at every turn, and we’re ready to begin right now.
#teamthriller