Rambling PSA

5 July, 2017
Rat Fink

Every morning, he looks at the ever-expanding collection of medicines on the breakfast table, and screws up his courage.

His lung tumors and swollen lymph nodes are pressing on areas of his larynx and vocal folds, as well as on his esophagus. Not only can he not ever clear his throat or get a productive cough (take a moment and envision going through that 24/7), but now he is having trouble swallowing. Taking these pills each day is getting to be an uphill struggle.

But he still found the humor to laugh about his clumsiness with attempting to put some cans of pop in the fridge and scraping his arm against the cardboard packaging. He proudly showed me yet another bandage on his arm. The man simply cannot stay out of trouble.

So, the public service announcement…

Did you know that lung cancer is the #1 cancer killer of both men and women? According to the American Cancer Society, lung cancer kills more people each year than breast, prostate, colon, liver, kidney and melanoma cancers combined. We have massive awareness campaigns for these other types of cancers, but where is the ribbon for the #1 killer? I’ve never seen a mainstream push for screening for lungs. Shall I start one? I wonder if the Thriller would volunteer to be the poster child. Hmmm…

You may ask: What is the screening process for lung cancer? Well, that’s where it can be a bit tangled and dark. Suffice to say that I know an encyclopedia’s worth of stuff about lung cancer today, compared to what I knew in May. As you might imagine, I’ve done little else with my spare time except read up on it:

  1. It often takes 10-20 years or more for lung cancer symptoms to manifest. I have read many personal accounts of people who never had any symptoms (persistent cough, weakness, breathlessness, constant fatigue, swelling of extremities or lymph glands, vocal cord paralysis, trouble swallowing, hoarseness, rapid weight loss, wheezing, chronic bronchitis) until their cancer was already in its advanced stage — which is exactly what happened in our house.
  2. CT scans are the best screening for lung cancer, but they are not without their problems. According to cancer.org, the trouble is that computed tomography x-rays often find abnormalities that look like cancer, but aren’t. This can lead to biopsies and other tests that potentially lead nowhere. Still, if it’s the best you have and you want to know, I’d go for it. I’m going to — believe it.
  3. Are you “high risk?” Then get thee to the doctor for a screening appointment.  To be in the high risk category, you must be aged 55 to 74 years, have a smoking history equivalent to a pack a day for 30 years, and currently smoke or have quit within the past 15 years. The Thriller quit smoking in 2010, at age 58. That’s about when his COPD began to kick in. What we thought was the slow progression of emphysema was actually the rising onset of lung cancer.
  4. Lots of people who get lung cancer have never smoked. Just because you’re not high risk doesn’t mean you’re in the clear. I think *everyone* should be screened for lung cancer, right along with getting the mammograms and PSA counts and pap tests and colonoscopies.

I wanted to know some history of the disease, especially as related to cigarette smoking. Here’s the initial trend, from the Lung Cancer Guidebook:

 

Lung cancer is a relatively new problem for human beings. In the early 1900s, lung cancer was extremely rare. Although people have used tobacco for centuries, until the early 1900s, it was most often smoked with a pipe, in a cigar form, or chewed. The machines to mass-produce cigarettes were invented in the 1880s, but it was not until after World War I that cigarette smoking became prevalent in the United States.

During the war, American soldiers were given free cigarettes donated by tobacco companies to the U.S. military. Many soldiers left the military with a lifelong addiction to the nicotine in tobacco products. At that time, the medical community did not realize the long-term impact of cigarette smoking on health.

 

So here we are, a hundred years later, seeing the avalanche finally letting loose. It’s time to bring lung cancer forward on the parade route, not to supplant the other kinds of cancers out there, but to march on the same front line. Consider me endowed with a new purpose.

Much love,
#teamthriller

Slight disappointment

3 July, 2017
Rat Fink

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. :-D 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

No more knives

30 June, 2017
Rat Fink

…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

Some direction

27 June, 2017
Rat Fink

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. FrameAfter 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. WaitAfter 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

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