The rather long Wednesday

22 June, 2017
Rat Fink

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

Odyssey

14 June, 2017
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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

Where’d my “get up and go” go?

7 May, 2017
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I’m supposed to go to the band concert this afternoon. Honestly and truly, I can’t pull the trigger. I can’t get out of my jammies. I have no will power. I’m a useless blob. Call me Jabba the Hutt.

I texted my band guy and said I wasn’t going to make it today, and I am already consumed by guilt. I never miss concerts — even when I don’t feel the greatest. What’s different about today? I know not. But the thought of getting dressed and ready and driving 19 miles is more than I can bear. What gives?

Today, we need to go to the dog park (even they are lazy and listless today). I need to think about other things and move this bod. I need to write rhythm section charts and parent letters. I need to shake this fog and get ready to be brilliant at dinner tomorrow.

Who knows…maybe I’ll change my mind come 1:00, when it would be time to get ready. It won’t kill me to try.

Try…hmmm. What’s to “try” about getting dressed and cleaned up and in the car? What am I, an invalid? Recently, someone told me to just “unplug” and think about me for a change. Gotta say, as nice as that sounds, it’s not how I was raised, and not how I raised my kids, for good or ill. You always think of others before self. Maybe that’s what’s got me feeling so guilty about being a lazy dog today, all curled up in a ball, feeling sorry for myself. Can’t run away from my nature/nurture.

Do you ever do that? Decide to put yourself first, then end up changing your mind anyway?

Just the facts.

6 May, 2017
Rat Fink

Greetings, my long-lost fiends.

Looks like we all will survive another school year in Paradise. It’s been a tuffy for your old pal Rat Fink. However, even an annus horribilis can have its sunny points, and this one most certainly did. Kids made some nice music, and it helped me to feel not so adrift.

I saw this on Facebook this morning:

(I especially liked the “10 yrs.” fact. :-) )

This graphic lists the benefits of children studying music, the effects of which purportedly last far into adulthood. I love that. But for all its excellent science and obvious positive results, I’d like to examine things in reverse:

What does performed music do for other people?

I often tell my students (they could likely quote me, chapter and verse, while rolling their eyes at the same time) that this whole choir thing isn’t about them, or me, or satisfying the content standards set down by the Ohio Department of Education. Rather, it’s about our audiences. We do this for them. We sing to bless people; for 45 minutes in an evening, we will strive to help people forget the stress of the day, or the argument they had with someone, or the bill collectors calling. For one shining moment, we create art and recognize beauty. (Hopefully.) What other class in school allows you to do that?

Sure, our rehearsals serve to make the kids better singers, better team players, and encourage working together for a common performance goal, but I desperately wish for them to view it as something far more important. I want them to make their audiences feel comforted, exhilarated, entertained, happy — whatever they need at the moment.

To extrapolate even further…I think it’s something we’ve lost as a culture: doing something purely for the benefit of others. Putting others first; deference. Many say the 1980s was the “me” decade. Perhaps. But if the 80s were focused on “me,” then the 2nd decade of the 21st century (the “teens?”) is most assuredly focused on “mine.” Don’t take anything that’s mine. I’m not sharing. Get away from my things because you didn’t work for them. Don’t say anything to my kid that doesn’t ooze admiration. I’ll insult you because I don’t like what you do/think/are/believe, but if you have a divergent opinion, shut up, because you’re stupid.

Where’s the focus on blessing people and being helpful and supportive and kind? And make no mistake: I’m not giving the Sermon on the Mount, here. I’ve been guilty of it all as well at times. It’s just that with the political (and I use that term loosely, given the current circus) climate encouraging those who kept their hate and selfishness heretofore somewhat hidden to now extol it in plain view, I think about it more.

Thoughts on a busy Saturday morning. I should be grading music history exams. Time to get to work. Happy weekend — I hope the sun’s out where you are! But for us, up here in the 40-degrees-and-pouring…

What happened to March?

7 April, 2017
Rat Fink

It kind of just flew out the window, I think. I didn’t even get to comment on the bizarre weather the last two months.

Last time I wrote to you, I was celebrating my ninth birthday here at RtB, back in February. Then I woke up this morning and it was 7th of April. How’d that happen?

As I sit here with the space heater blasting my tiny frozen feet at 6:40 on a day when I should be getting ready for school, but instead I’m “enjoying” another snow day (seriously, 5 inches, hello spring), I wonder how, with eight remaining rehearsals, my high school choir will sound on our upcoming concert.

I know, first world problems and quit complaining. Still, while many would say they’d be rejoicing if they got a day off work, and teachers have it so easy and stop with the feigned frustration, the frustration really isn’t faked. It’s April, and for public schools in the US, that’s testing month. There was a big test scheduled for today, which sounds simple enough to reschedule, but when you examine the intricate ballet of assigning laptops, rearranging testing spaces, closing off certain sections of the school, changing the order of classes and generally upending the entire day so the Ohio Department of Education can administer yet another in its long line of expensive tests designed for kids to fail, well…it’s a bit of a mess, and that’s not even considering the actual material on the exams, to wit:

A teacher friend told me that some of her students had to interpret Othello and glean aspects of the character of Desdemona based on a conversation with her father, while others had to write a comparative analysis of symbolism in Shakespeare’s sonnet #54 and Edmund Waller’s “Go, Lovely Rose.” Still others were asked to analyze two arguments about whether bus or plane transportation was better. All of this on a standardized test, written supposedly to measure mastery of a standardized benchmark. And of course, when the students fail, it’ll be the teacher’s fault. Insanity.

Anyway…

To say that March crashed in like a lion is pretty accurate. Both the Thriller and I had major health issues in March. Mine are on the mend, but he still has some mountains to climb. Sister Mavis also had some surgery and complications. But we’re all doing better, so no complaints here.

I still don’t know where the lamb went.

RF, in the April blizzard