Road Trip!

IMG_5630

This started out as a travel blog. Not the kind where I tell you what I ate and where I slept. This blog had a different purpose: to seek out the quirky, the odd, the unusual. More than anything, it sought to show that no matter where you go in North America, you can find interesting things to see and do, and fascinating people to meet. Even in Podunk, North Dakota.

Since last summer, however, this journal – and I – have been hijacked by a cancer diagnosis, and since that time it has mostly covered a different sort of journey – my cancer journey.  It is now time to return this journal to its original purpose.

Today is a landmark day. After two tongue cancers, two cancer surgeries, plastic surgery to replace the part of my tongue that was removed, and 5 1/2 weeks of radiation, my last radiation treatment was today. Let the healing begin.

When you finish radiation, they have you ring a big bell on your way out, signifying that you have now “graduated:”

In my left hand is the Mask of Terror that secured my head to the table on which my body was offered in sacrifice to the Death-Ray Gods.

My medical team has emphasized that healing will be imperceptible for the next two weeks, and slow and non-linear thereafter. But the cancer is gone, and in some number of months, I will be able to say goodbye to the Ensures and milk shakes on which I have been subsisting, and once again enjoy seafood from the Pacific Northwest, Mexican food from the Southwest, Cajun cooking and BBQ from the South, butter tarts and poutine from Canada, and yes, maybe even walleye and meat loaf from the mid-west. It is not clear whether I will ever again be able to fully appreciate a fine Willamette Valley pinot noir or a lusty California cabernet, but my fingers are crossed.

In the meantime, I have pulled out the maps and travel guides again. It’s time to start planning the next road trip. I’m thinking maybe the Blues Highway from Nashville to New Orleans this Fall. Yeah, that sounds about right.

Road Trip!

https://maps.roadtrippers.com/trips/10427768?utm_campaign=trip_guide&utm_medium=share&utm_source=copy

I Miss Baseball

IMG_0689

I miss the smell of the grass. The whiteness of the uniforms at the beginning of the games. The traditions. Booing the ump. Cheering the hits. Arching your body to help the ball make it over the fence on a long fly. Sharing in the joys and sorrows of your team with thousands of people around you. The hot dogs. The beer.

I’ve been thinking a lot about baseball. By now we should be figuring out how our teams are doing, whether the new players are really helping, and whether the ones we lost will matter. Not this year.

We had tickets for Spring Training in Phoenix this year. As it turned out, the first game fell on the day I ended up in surgery. Now I’m in the late innings of radiation, and I keep thinking of baseball.

The first week or two of radiation is like single A ball. The Hillsboro Hops. The Hickory Crawdads. The Lansing Lugnuts. No big deal. Hardly noticeable.

Then by the second or third week you’ve moved up to Triple A. Skin starts to burn inside and out, it starts getting painful, everything south of your eyes and north of your collarbone gets red and swollen. It becomes hard to eat, and some end up needing a feeding tube snaking out of their stomach. Taste changes. In my case everything tasted like it was basted in sea water.

Just when you think it can’t get worse, you get called up to the Majors, the Big Leagues, the Show. I got my notice last week.  Like Crash Davis said in the movie Bull Durham, “everything is different when you get to the Show.” My surgeon looked in my mouth a couple of days ago and said “Wow, you’re on fire in there.” My radiologist said “Man, we’re really beating you up.”

I can no longer chew so I’m under orders to take in 3,000+ calories a day using liquids only.  So far, I can still swallow, I haven’t lost weight, I walk a mile or two a day, and though some would argue the contrary, I haven’t lost my sense of humor. This will continue for the last two weeks of treatment, and incomprehensibly, for the two weeks thereafter.

Avid reader Dave – a renowned writer, and life-long friend – just wrote:

“You are so much on my heart since your last blog. The honesty and insight combined to just, well, sit me down. — to ponder and try from distance, and fail, to imagine any small fraction of your present circumstance.

“I’ve probably read your paragraph about “Hope” 20 times. [see Carcinoma Blues] I’ve written it in my journal with long handed scribble. I’d never felt the connection between “my plans”—whatever they may be— and their role in producing a sense of hope: an expectation of future good.

“Against all of that an old old verse hit me on the head. So, this week, I offer it to you, my friend.

“ ‘May the God of hope fill you with all joy and peace as you trust in him so that you may overflow with hope by the power of the Holy Spirit.’

“Ancient wisdom from St. Paul to the Romans, and to me.

“And now from me to you.

“Love you, buddy. Dave”

My response:

“So true. When your world is on fire, hope is all you have. And love. Always love.”

Hope is why there is baseball. Your team may not have made it to the playoffs, but you hope they will do better this year. The hitter fanned on his last three trips to the plate, but there is always hope that he gets on base this time. Your team might be the worst in the league, but tonight, this night, there is at least a one in three chance they might eke out a win. And you are there because of your hope that they will.

A couple of weeks after radiation treatments end, down you go back to Triple A. The burns begin to fade, the pain begins to subside, swelling starts to get smaller.  After a time, you’re back in Single A, and months later you’ll be transitioning to your (new) normal. New normal is not normal. Some things will last the rest of your life: dry mouth, crappy mucus, taste changes. Some people never get their taste back but most do. Mostly. The big unanswered question: will I ever be able to tell a 2 Buck Chuck from a Silver Oak? That’s a question for next season. I just hope I’ll be able enjoy a hot dog and a beer at the ballpark.

Play ball!

(And it is worth your time to watch following clip to its end)

Carcinoma Blues

One by one, so many concerts, festivals, and events I had been looking forward to are being cancelled. The latest is the Oshkosh AirVenture this July. Oshkosh is Woodstock for people who love aviation, minus the mud, nudity, and weed – pilots get their high from altitude. Now shamelessly inserting a photo of my son Tim and son-in-law Marc on another Oshkosh trip:

IMG_0078

Of course, not going to Oshkosh also means not having to ingest Wisconsin food. I’ve been many times before and every time I look for that killer place with great food, and every time I come up wanting.

Once I asked what’s the best place around and was pointed to a giant dinner house off the freeway in Fond du Lac (home of the Fond du Lac Free Family Walleye Festival!). But I love meat loaf and there you had your choice: bland or tasteless. I chose bland. The mashed potatoes were instant, the vegetable was canned peas. Another time I went to a german restaurant figuring they must know how to make good german sausage, but it was forgettable, meaning I can’t remember a thing about it.

So last time, I decided I needed to go to the best place I could find for Walleye, which is the Wisconsin State Fish. Note that fish are so important in Wisconsin, you are required to capitalize the first letter. I mean of Fish. Actually the Muskie is the State Fish, but no one can catch one, and I doubt anyone has ever eaten one since the rare ones that are caught end up hanging on a wall somewhere. So after the ‘green salad out of a bag’ course, sitting right next to the instant potatoes and canned peas, there it was – Walleye. It was okay. No one goes to Oshkosh for the cuisine.

I do appreciate the fact that while I’m stuck here close to the radiology clinic I’m not missing much, but I’d be happier if Covid had not shut down the world. These days you can’t even plan, and a plan at least gives hope. I can plan a trip to New Orleans; I might not actually be able to go but a plan at least gives me hope that I might, a target, something to work and save for. And live for. Right now, how can you plan? Everything’s been cancelled.

This may be the first year in memory I won’t be able to go to a Blues Festival. These are so important to me that I capitalize the B and the F. The Waterfront Blues Festival – always the 4 days surrounding the 4th of July – is so close to my home I can walk to it. IMG_0652 It is the largest Blues Festival west of the Father of Waters (you know it as the Mississippi but I can’t spell that so I’ll go with the Native Americans on this one). Cancelled.

Fortunately, my friend Rich just clued me in to Roomful of Blues, a group of bluesmen I’d never heard of but who have been around for 50 years. They all look just like me. You put a bunch of grey hairs in a recording studio and something good has to come out.

When I was a bluesman for Legal Tender in the 80’s, we played a lot of songs about love: love sought, love lost, love regained. My how things have changed. The song that grabbed me from Roomful’s latest album was about something entirely different but of great interest to me right now. Here’s a version by Sam Bush – another grey haired bluesman:

We’ll get through this – and I mean ALL of this: Covid, cancer, canned peas. And when we do, off we will all go on family vacations, and visit our grandparents or our grandkids, and head to Disneyland, to the coast, to the mountains – heck, to the store!

And I will go to Oshkosh for airplanes and hot turkey sandwiches, to New Orleans for everything that is New Orleans, and to every Blues Festival I can find. Maybe I’ll even get to hear Sam Bush or Roomful of Blues, and tip my hat when they start playing the Carcinoma Blues.

 

Quartzite Yacht Club and Living With The Ray of Death

 

More than one avid reader (two, to be precise) have wondered how I am doing one-third of the way through radiation therapy. Most readers are aware that half my tongue was removed in early March due to re-current cancer and replaced with skin (medical term: “flap”) from my hairy forearm. I am not kidding. Why they did not shave it before installing it in my mouth apparently requires an advanced degree in “What the Hell?” which I do not have. Radiation is the next step in the process so the doctors can say “OK Ken, you are now cancer-free, and this time we really mean it.”

I will get to that. But first, you deserve something of more (or perhaps less) interest in return for your investment of 2 Minutes.

On the way back from Houston last Fall, we left the motorhome in Tucson, and drove the Jeep back home. On the way, we stopped for a night in Quartzite AZ.

Quartzite is hallowed ground for the boon-docking set. These are the people who prefer to park their trailers on dirt or sand in the middle of nowhere, receive no services (water, sewer, etc) whatsoever and pay nothing, or in the case of Quartzite, next to nothing for the privilege. The BLM manages hundreds of thousands of acres of raw desert surrounding Quartzite and for something like 10 cents or so, they allow people to park their RVs there all winter. Hundreds of thousands of people (by some accounts, over a million) take them up on that offer. Of course people also bring their tow vehicles, boats, one or two ATVs, a dirt bike or two, lawn chairs, propane powered fire pits, and who knows what else – all at no extra charge. So approaching the area in the winter at night it looks like a major city with fire pits blazing as far as the eye can see.

In the absence of an RV, the choice of accommodations in Quartzite consists of the Super 8 motel, or the cab of your semi. We decided on the Super 8. When I was younger, I could not afford to stay in a Super 8. Motel 6 was my preferred accommodation. Super 8 was a luxury I afforded myself only when the Motel 6 was full. It had been many decades since I had stayed at either and I was interested to see what this would be like.

After checking in, we noted that many of the luxuries of higher end hotels that we had come to expect over the years were missing: things like working lamps, a toilet that flushed reliably, and functional heating and air conditioning with fans that did not sound like a jet taxiing for takeoff. But, we did have four walls, a bed, and a bathroom, and it only cost 10 times what it cost the last time we stayed at one.

The motel restaurant consisted of a vending machine, so we went off in search of the local cuisine. On the way to the rowdy pizza parlor that we were told was the best place in town, we drove by the Quartzite Yacht Club and decided this was too good to pass up.

There is no body of water anywhere near Quartzite, but Al Madden bought a nondescript beer bar in the 1970’s and decided to call it the Yacht Club as a joke. He started selling memberships for $10, and business took off. It is no longer a joke. It is, in fact, the largest yacht club in the world, boasting a membership of over 10,000. For $49.95 you can become a member too, which gets you a t-shirt, a cap, and – most importantly – a membership card that has been honored by illustrious yacht clubs the world over (at least, until they figure out that the joke’s on them).

Commodore Madden rebuilt the club after a fire in 1995, and died within a year. His legacy now continues under the stewardship of current owners Omar (below) and MeMe.

IMG_6119.JPG

I struck up a conversation with a local and asked if he liked Quartzite. “Oh, love it. I’ve been living here for 15 years, ever since I retired.”

“What is there to do here?”

“Oh, lots!”

“Like what?”

“Well, most people get on their ATV’s and head out to the desert.”

“Great! What do you do out there?”

“Well, ride around.”

“Anywhere in particular?”

“No, just around.”

“So people around here mostly have ATV’s and ride them out in the desert?”

“Oh yeah.”

We did not buy a membership, but we did buy one of their unique glass toppers for $5:

IMG_6129.JPG

After bidding farewell to Omar and MeMe and the Quartzite Yacht Club, we returned to the Super 8 and tried to get to sleep. I had forgotten how much sound can pass through walls made of cardboard. Fortunately, there were no newlyweds on either side, and the rowdies down the hall had hit the sack early. The bed sagged so that from the side, a perfect V was formed. Next time I’ll check the box for the optional “real mattress.”

Alas my tongue, having not yet fully healed from cancer surgery #1, started to bleed and by midnight the bleeding still would not stop. So, off we went on a 45 minute trip to the nearest ER. Small rural hospitals are wonderful. In the middle of the night we waited only a few minutes and a nurse came out to the lobby. I told her the situation, she looked at it, and said “there’s nothing we can really do for it except apply pressure with gauze. When tongues bleed, it takes forever for them to stop and all you can do is apply pressure and wait.” She then gave me a bunch of gauze to cover us for the night. She then asked if I wanted to open an account and go through the formalities of setting me up as a patient and pay for the visit, or just be on my way. “I’ll just be on my way – and thanks!” By next morning, the bleeding had stopped.

I still wondered what the draw of Quartzite was, so I headed out to the local coffee shop.

IMG_6130.JPG

The Mountain Quail Cafe is out of the way, looks like a nondescript home, and is nowhere close to the Interstate. There is no buzz, no rush, no hurry. Everyone moves at a slow pace.  The parking lot is filled with only two kinds of vehicles – ATVs and Jeeps – so my car fit right in.

But I didn’t. As I sat down and perused the menu, all eyes were on me. First, I was a stranger. Everyone else knew everyone else on a first name basis. Second, I was dressed funny. I wore jeans, running shoes, and a shirt with buttons on it. Every other old guy – and they were all old guys – abided by the desert dress code: shorts, sandals, t-shirt, baseball cap. The few women all wore colorful flowered tops and slacks.

“I’m in town for the day, what should I do while I’m in Quartzite?” I asked the people seated next to me.

“Well, most people get on their ATV’s and head out to the desert.”

“Oh, where do they go?”

“Just around.”

“Any place in particular?” as if maybe there was a watering hole somewhere that everyone went to.

“No, just ride around in the desert.”

This was getting me nowhere. “What if I don’t have an ATV. Is there anything to do in town?”

“Oh, I’d just walk around, see what stands are open at the flea market…just walk around.” As we spoke, I found that everyone had acquired a slow, engaging drawl as if they were all from West Texas, though it turned out most were from California.

Many come every day. It is the unofficial senior center, though there are plenty of official ones in town as well. Marge sat alone at her table, reading a book from the religious rack. She comes here every day, and exchanges a few words with the servers and the other patrons, but I got the sense this was a lonely place for an elderly single woman who would rather read than hop on an ATV and ride out to nowhere in particular, Arizona.

The food was ample, as was the calorie count. I paid my bill (“thanks hon,” said the server, “see you tomorrow.”) and decided to walk around. Flea markets were everywhere. Lots of beads, jewelry, rocks, and more than one Trump Shop. I did not come across a Bernie Shop, and suspect that meetings of the Quartzite Democrats can fit around the dinette in a Fifth Wheel trailer. No democratic socialists around these parts, though pretty close to 99% of the residents enjoy socialized income (Social Security) and socialized medicine (Medicare and Medicaid).

It was time to press on, so I never found out about the joys of heading out to the desert in an ATV to turn gasoline into noise. I also did not come through town in time to meet Paul Winer, better known as the “Naked Bookseller,” who had recently died in his sleep. In addition to owning a bookshop, he was also a Boogie Woogie Blues musician known as Sweet Pie. I was glad he wasn’t known as the Naked Musician. His upcoming Celebration of Life was front page news in the Desert Messenger (Motto: “Always Free!”).

Well I could go on and on about all the wonderful things to see and do in and around Quartzite (did I mention going out on your ATV and riding around in the desert?), but I promised a brief health update and here it is.

The radiation treatments themselves have turned out to be no big deal. I arrive, lie down on the Rack, they put on the Mask of Terror, and the Death Ray machine goes around me a few times. The Rack is actually quite comfortable, and my fabulous radiology specialists always give me a warm blanket and turn Pandora to 60’s Classic Rock. It turns out I have no tendency to claustrophobia, so the Mask of Death has actually become my friend – it keeps my head from moving so I don’t have to worry about getting a twitch and having the Death Ray zap out my eye-ball. Two or three songs later I am out the door.

Radiation not only kills cancer cells, but also kills perfectly healthy cells. The body figures this out pretty quickly and goes to work repairing the good cells. This takes work and calories and protein. You may not be hustling, but your body is. Radiation-induced fatigue sets in after 2 or 3 weeks, and for me that has not yet happened. I remain modestly active, walking 1-1/2 to 2 miles a day. I’ll keep doing this as long as I can.

All those calories and protein have to be replenished, and so the dietary advice for anyone undergoing this is to eat “mindlessly and excessively.” In one of those ironic jokes that mother nature plays (like when you have your tonsils out and they say you can have all the ice cream you want – ha!), radiation also destroys your salivary glands, and messes with your taste buds, and pretty much destroys your appetite. So just when you not only may but must eat all those monstrously unhealthy snacks, appetizers, main courses, side dishes and desserts you always wanted, your body looks at them and, in its best Larry David whiney voice, says “ehhhh, I don’t think so. Not really interested.” But you must, and so you eat and eat and eat as much as you can throughout the day to maintain your weight. Losing weight increases the chance that cancer will recur, and makes ultimate recovery much harder, so I now treat it as a job. When I get up in the morning, after my first cup of coffee, I say to myself “well, time to go to work,” and that’s what eating now feels like.

More ominous side effects are now starting to arrive. Pain throughout my mouth now makes eating solid food almost impossible. I will probably wear out my blender. I no longer have any sense of flavor. Ice cream  and whipped cream have no taste and might as well be butter. Vanilla pudding and chocolate pudding taste the same – butter. These impacts were not unexpected but they did come on faster and harder than expected. My dietician warned me today that things will get worse. In the meantime, I’ve maintained my weight, and have avoided heavy duty pain meds and a feeding tube so far – and hope to keep it that way.

Here in the Pacific Northwest the trees are now leafing out, the sun makes an occasional appearance through the low overcast, I am still able to go out for walks, and our WiFi is wicked fast, so life is still good. I’ll report again when I have something half-ways interesting to say.

My New Tattoo

I am not the first in the family to acquire a tattoo.

When my daughter Kate was midway between being a girl and being a woman, in that amorphous period when it was not clear if she was still in my charge or not, she asked if she could get a belly button ring. As if she needed to ask.

Yet some time later, she came into my office and said: “Dad, I know you told me I couldn’t get a belly button ring, and I know you can stop paying for my college, but it was important to me and I decided I wanted to get a belly button ring, and so I did it.”

I don’t exactly remember what I said, but I think I gave her a hug and told her that although I was disappointed, we would still keep paying for her college.

Kate was a regular blood donor, and it was a bittersweet moment when she learned that because of her assertion of independence by way of the tattoo she could no longer donate blood for at least two more years. From that, she wrote one of the most eloquent college-level essays I have ever read about the entire experience.

Of course, she later got a tattoo. By his time, she was married and had a couple of kids, so approaching me for permission was no longer an issue. But word got around, and my disappointment, or perhaps just puzzlement, was tempered when I learned that her tattoo consisted of the key phrase of her favorite hymn: “How can I keep from singing?” There followed a number of other tattoos, generally coinciding with when she and her friend Lauren got together, and I have not catalogued them but do not believe they are phrases from hymns.

She is no longer alone in this family.

When you go in for radiation and they fit you for the Mask of Death to keep you restrained during treatments, they want to make sure you are properly aligned for the Death Ray. As a result they give you a tattoo that they can use to line up your pitiful body with the machinery that surrounds you as you lie prone and immovable. Fine. But did they ask what I might want permanently affixed to my body? A favorite phrase, a boyhood hero, a fetching design, a phrase from a song? Oh no, mine was simply this:

“.”

A period. That’s it. If I want to put a clever phrase in front of it to make it meaningful, that’ll be on my dime.

So today, after I arrived for my first radiation treatment, they placed me on The Rack, attached the Mask of Death, lined up the machinery using the “.” and laughingly asked if I wanted them to tie my arms up so they wouldn’t dangle on the side. “No thanks, I’ve got this.”

The first session involved another CT scan to make sure everything was properly lined up, about 10 minutes. The doctor checked the scan, I overheard gales of laughter coming from the control room as they confirmed that they were about to barbecue the correct areas of my head and neck, and then they released the Death Ray to kill any lingering cancer cells and any other cells in the neighborhood.

It turned out to be anticlimactic. The actual treatment (ie, when the ray-gun is actually on) was less than 5 minutes, painless, and hardly made a noise. I closed my eyes during the whole thing, concentrated on slow deep breathing, and had no trouble breathing through the mask.

One down. Twenty-nine to go.

So the treatments themselves are no big deal; all the action is in the side effects, and they are many, generally starting after a couple weeks, and becoming worst during the last two weeks of treatment and the two or three weeks after treatment stops. Everyone is different, although there are some side effects that everyone gets from this kind of radiation. No need to catalog those here, I will deal with them as they come. One can get through anything for a month or two.

Sadly, there is one other consequence of radiation treatment. No belly button rings, ear rings, nose rings, or tattoos are permitted until it’s all over. But after that, Kate, let me know when Lauren is coming to town. I’ve got some ideas.

Eye Contact

Infants have no problem with eye contact. They zero in on you when you look at them, and though at some point you might look away, when you look back they are still locked on to you like a sidewinder missile.

At some point, this changes and most kids become wary of making eye contact. I had to work with my kids when they were young teenagers to look at me when we were talking. It did not come easy. There was one exception. I told them that when they received a compliment, to always look down at their feet, draw circles on the ground with one of their toes, and say “aww, shucks.” This was cruel on my part – the proper response being to look at the complimenter and say a simple “thank you” – and revealed that I had watched altogether too much of the Andy Griffith Show when I was a boy. “Aww shucks Aunt Bee,” Opie would so often say.

My parents moved a lot when I was young, and I never made a lot of friends since it seemed I was always in a new school. I didn’t think that people, as a rule, liked me. I was not depressed about that, it was just the way it was.

As a sophomore in high school, I began thinking about how to change that. I realized that walking around school, my gaze was usually down at the ground or up in the sky looking at airplanes, and my expression was less – as in expression-less. I decided I would start walking around with a smile on my face, just to see what happened. It was hard and awkward at first, but after a while it became my default expression. I also decided to say hi to people as they passed, and started learning the names of my classmates and committing them to memory. It is impossible to say hi to someone without looking at them, so I also began making eye contact. Over time, people would smile back, and occasionally remember my name.

It felt good, but it didn’t occur to me that a major alteration in my social life had taken place until someone told me: “Ken, everyone likes you.” I was floored. I had no idea. Looking at people, saying hi, and smiling worked.

As an adult, I still walk around with a smile on my face, looking at people as they pass by, often giving them an ever-so-slight additional lift of my cheeks that suggests that I see them, I acknowledge them, and want them to know I am smiling at them. In some towns, this might lead people to immediately avert their gaze, but in Portland, more often than not, I get an immediate, involuntary return smile back. “Made you smile,” I’ll say to myself.

But now we all wear masks when we go outside. It is a deeply depressing time, made more so, so I thought, because we can no longer smile at each other. But I was wrong. The best part of a smile is the smile that comes through the eyes. The slight squint, the lilt of the outer edges, the eyebrow lift, the eye contact.

So I started trying to make eye contact and smiling through my mask as I saw people in the elevator (maintaining 6′ separation) or while walking outside (maintaining at least 6′ separation). To my dismay, no return smiles, no acknowledgment, no eye contact. It was as if I didn’t exist, as if looking at someone else would expose them to the virus.

Somehow, physical separation has inculcated in us a perceived need for social isolation as well. “Social distancing” – a misnomer – has been taken too far, and we have become reluctant to talk to one another, and even acknowledge each other’s existence (except that wary look that says “are you sure you want to take this elevator, maybe you want to take the next one”).

Let me be the first to say this: you cannot catch Covid 19 through eye to eye contact! You cannot catch the Coronavirus through a smile. Acknowledging each other’s existence does not put any of us at risk.

So I am now back to smiling at people I come across, albeit through a mask, and watching in wonder at how much we are able to communicate through our eyes, and hoping against hope that I will get an involuntary smile back. And occasionally, even now, I do.

“Made you smile.”

 

A Humorous Look at Radiation Therapy

Since I had a recurrence of tongue cancer, I will be needing radiation therapy. There is no history of cancer in my family (sorry kids, there is now), so I don’t know much about it, but what from what I have learned so far, it is a riot!

I actually googled “radiation therapy humor” and got things like:

“Mammogramming your boobs is more important than Instagramming them.”

“You must be a photon, ’cause you just took me to an excited state.”

And, “It will make you look radiant!”

I then did some research and found that going through radiation is not all bad.

You lose your sense of taste so losing weight is snap.

They custom fit you for a mask that looks like chain-mail and use it to lock you down on the table so you cannot move. No more wondering what to wear for Halloween parties.

Radiation burns your skin and throat so even if you get a cold or other bug, you won’t notice.

In an era of hunkering down, staying at home, and sheltering in place, it gets you out of the house every day.

Want some Oxy? Noooo problem.

Eating becomes work, and most people lose up to 50 pounds on the radiation therapy diet. Don’t want to work that hard at eating? They’ll stick a feeding tube back in you, and you can lie back and let gravity do the hard part.

The first two weeks are apparently not too bad, but then exhaustion sets in and by the end of the 6 week run, it’s all you can do to go there, come back, and sleep, solving the problem of what to do during the Covid 19 crisis.

My initial appointment to get the mask of terror fitted and determine where to aim the death ray is April 2, and it should be all over by the end of May.

My goal is to finish this process with no feeding tube, no wires, no narcotics, no weight loss, no Coronavirus, and no funeral. As always, prayers and other good Karma gratefully accepted.

One last thing: after radiation comes the after-glow.

 

The Best Part of My Hospital Stay

The best part of my recent hospital stay was trying to get my doctors and nurses to smile. The worst part was everything else.

My mom taught me a lot about grace under difficult conditions. When she was in a nursing home, dying of ALS, she insisted that we always have a box of chocolates on her side table. She could no longer speak, and only had the use of two fingers on one hand, so we had to put the chocolates on her good side. The chocolates were not for her; she could no longer eat. But whenever anyone came into her room, whether a nurse, an aide, a doctor, or a visitor, she would motion them to the side table and silently offer a candy.

Although mom could no longer speak, she could type using her two good fingers on one hand. Speech synthesizers were $25,000, but the first iPads had just come on the market, and I found out that for $5 we could get her an app that would do the same thing. She got to pick her own voice, and she chose a boring, American voice despite my sister and I lobbying for a distinguished British voice.

It is interesting how things come around. As I was recovering from the surgical removal of half of my tongue and unable to speak for the first 3 or 4 days, I remembered what we did for my mom. I had brought my iPad to the hospital and downloaded the latest and best speech app, now $10. Trying out the different voices, I chose the distinguished British voice. I loaded some of the common phrases I would be needing, and every time someone came in I pushed the appropriate button: “Good morning and how ARE you today?” I would then feverishly type responses to all their questions, and my own questions of them, and when they were leaving I would hit “thank you SO very much” in my new Alec Guiness voice. Made them smile every time. Often they would come in just to hear my synthetic voice.

When my tracheostomy was blessedly removed and my voice returned, all the staff wondered if my own voice would sound like Alec Guiness. It did not. It sounded like me. They were only a little bit disappointed.

Chocolates did the trick too. My family brought boxes of them, and I would offer them to the nursing staff. “You know what nurses love!” more than one told me. They often do not have time to take a break or have a meal, but they always have time for a chocolate.

Nurses and aides often go from crisis to crisis, not having time to rest in between or even pee. There is a name for that: nurse’s bladder. They keep holding it in to the point that their bladder expands and they can no longer tell when their body wants them to relieve themselves. They were upset with me if I didn’t pee regularly, exhorting me not to get “nurse’s bladder.” I told them not to worry, I’ve always had long range tanks. “No you don’t,” they replied, “you have what we have.” We bonded over that.

Over the 8 days I was there, I made a point about learning their names, asking about themselves and their families, and when I was allowed to walk I’d smile and wave to them as I did my laps of the ward (11 laps = 1 mile). They’d usually smile and remark on how good I was doing. After one day post-op I was walking more than most patients after 5 days. I came up with names for them (Florence Nightingale, Angel of Mercy, SuperDoc, etc) and they called me SuperPatient or RockStar Patient and lobbied to have me included in their rounds.

My first room was freezing cold, and in fact gave me a cold. When you are struggling for every breath (thanks traecheostomy!) and unable to sleep, a cold is pretty much the worst thing that can happen to you. After a couple of days an engineer came and determined that the heater in my room did not work, and I was moved to another room. Actually, that is an understatement. I was upgraded to the Presidential Suite. The largest room, with the best view: Mt St Helens, Mt Hood, the Willamette River, the beautiful city of Portland.

IMG_1310.jpeg

 

The view was staggeringly beautiful. There was even a day bed so that a family member could stay the night, and each of my kids did just that during the first few nights when I was in panic mode over the inability to breathe and could not sleep.

My daughter Kate stayed with me the first, and by far the most dreadful night.

IMG_6317

Did my nurses pull some strings to get me that room? I will never know, or at least, I will never tell.

By the time I left, many of the nursing staff and even one doctor sought me out to say good-bye and give me a hug.

That was the best part of my stay.

 

Home!

IMG_6332.JPG

No more feeding tube.

No more tracheotomy.

No more panic gasping for breath.

No more IV.

No more electronic tongue monitor.

No more waking up every hour for vitals.

Cleared to take food (liquids only at first) by mouth weeks before planned.

Able to talk.

No more having to communicate by pad and iPad.

Still waiting for pathology reports that will determine any need for radiation.

But..home!

I can see clearly now

My cancer buddy Ted, who had the same cancer as I but whose first surgery is so far his last, just wrote: “I’m at an event where this song was playing, and my heart went out to you.”

He knew it was my favorite song, my theme song, a song that sometimes reflects where I am in life but other times spurs my aspirations and gives me hope. He sent me this link:

Tomorrow I will be in the hands of the surgeons. I’m lucky to have a great medical team in whom I have complete confidence. About this time tomorrow it will be over, and I will already be healing. So no worries. And if you do think of me tomorrow, think of this song.

Ted, you brought a tear to my eye.

But a good tear.