Outside perspective

Last Friday, Mary had a scheduled procedure to remove a ganglion cyst from her right index finger.  A ganglion cyst is also called a "Bible Bump" because a common cure used to be whacking it with a big book (almost everyone had a big Bible) but we could not bring ourselves to attempt this cure.  Dr. Hazle recommended a hand surgeon in his building, Dr. Marilee Mead.  Both Mary an I assumed it would be removed simply in a doctors office with local anesthesia so we were surprised to find out that it required a visit to the hospital and conscious sedation. 

We arrived at the hospital and checked in on the third floor discovered the receptionist had a volunteer trainee learning the ropes.  There was a funny moment as she escorted us to a different waiting room.  We were walking down a hallway and she belched out loud.  Mary, thinking it was me, shot a dirty look in my direction.  I returned my best, "It wasn't me it was her" look/shrug.  The trainee opted to pretend it hadn't happened at all.  It was only her second day so we cut her some slack.

So there at St. Mary's, Nurse Mary prepared my Mary for Dr. Marilee.  Kind of a theme there.

I found myself feeling a bit giddy being in the supportive role this time.  I was in a very familiar environment (the surgery was performed at the Lack's Center operating room) and all the waiting rooms, check-in personnel, forms and procedures were not at all foreign to me.  But this time I was the bystander to the  all of the pokes, weird dressing gowns and obligatory checklists of medical history.

The nurse inserted a slightly less than perfect I.V. (causing some bruising), we met the anesthesiologist who asured us that this operation would be much safer then getting into the car to drive to the hospital, and Mary got doped up with the first dose of the Versed before Dr. Mead entered the room to fill us in on the procedure.  She was a bit kooky (which I really like in a doctor). Mary was sleeping by the time they wheeled her out the door.

Mary was sleeping when they brought her back to the room about 40 minutes later.  She was roused and immediately asked the nurses who they liked for the Academy Awards. Apparently she had asked the same question in the O.R. and the consensus had been Daniel Day Lewis as Lincoln. Mary thought some of them surely would choose Bradley Cooper for Silver Linings Playbook.

Dr. Mead came in explained that the cyst had grown right through the middle of her tendon.  That was quite unusual as typically they would go to one side or the other.  Dr. Mead looked right at me and used a metaphor, "It went right between the fibers, you know, kind of like parting your hair". Suddenly she looked horrified and I realized that she was looking at my bald head and thinking that she had just committed a faux pas.  She was turning red and I found myself turning red too as I explained to her that I was familiar with the concept of parting hair.

All is healing up well now and Mary will have a cumbersome bandage for a week but on the bright side, she's finding that it gives her a very effective, "I have an idea" look.

Speaking of others who are currently suffering more than me, here is a follow-up on on my friend Bob Russell, who in my last post I told you about his esophageal cancer metastasizing to his brain, his current chemo regimen dispatching with his trademark beard, his daughter being diagnosed with cancer and his classic bed & breakfast inn on Mission Peninsula catching fire and destroying a big section of his home, business and belongings.  There was a community fundraiser to help him with expenses for some new off-insurance treatments and it was extremely successful.  He needed $3,000 and over $10,000 was raised.  Thanks to all those who contacted me to find out how they could contribute.

Bob and Sally at the concert fundraiser

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Northward Expedition

I’ve been slacking on my journaling. Chalk it up to lack of suffering. I need more grist to inform this artistic expression. So today I am reaching out to external forces. 

If you’ve been reading this blog for a while, you may remember meeting Bob Russell.  He was diagnosed with esophageal cancer about a year ahead of me and made the time to visit me on my first day of chemotherapy.  He was a great source of encouragement and wisdom for me.  I’d been thinking about him a lot lately and wondering how his treatments were working.  He does not really tell of his progress on Facebook (nor do I) but I could see by photos posted there that he had lost some weight.  I decided to make a long overdue trip up north to stay with my mom and dad and then make a side trip to the Mission Point peninsula, where Bob runs a bed & breakfast, on the way home.

After a Sunday morning, uneventful trip up to Glen Arbor, I arrived at Mom & Dad’s place and got to first spend some time with Mom alone as she prepared for a church function and then later some one-on-one time with Dad after he returned from watching an Opera at a Traverse City movie theater with his brother, Rich.  Dad enjoyed telling me about how he and Rich were pretty much alone in the theater and that was typically the case at this particular venue. (These are not the LIVE Metropolitan Opera performances that are well attended at the State Theater.) 

I took some time to analyze and then rewire their new television set-up so that they could watch VHS tapes in addition to DVDs.  Dad has a huge collection of opera performances on VHS.  We chatted a bit and then went over to Art’s Tavern for Dinner.  We split a delicious Michigan IPA, brewed in Kalamazoo.

Monday morning, we invited Rich (and my Aunt Alyce) over for a visit where I gabbed a little bit too much and then after we bid them adieu, my parents and I decided to check out the Leelanau Sands Casino and have lunch there.  I’d been hearing reports about how Dad had been gambling my inheritance away and thought I’d check out the experience first hand.

It was an absolutely beautiful drive up to Suttons Bay. I certainly “get” that part of the ritual.  We decided to have lunch first and we trotted over to the cafeteria where the soup and salad bar was highly recommended.  For 6 bucks each, we loaded up on salads, soups and ice cream sundaes and I have to say we were all highly satisfied with our meals.  (The Dutchman in me always laments the small stomach I now carry around in my chest, especially in the proximity of an all-you-can-eat buffet.)

As we left the dining area, a young girl chased me down to show me that I had dropped my iPod.  It felt so nice to have that sweet encounter with honesty right out of the gate.

On the walk over to the penny slots, Dad pointed out how the casino supplied all the coffee you could drink at no charge, as he helped himself to a cup.

The penny slots, I learned, are a gateway drug.  The bells and the lights point out when you are winning and it seems like every third or fourth pull returns a one or two cent return.  These particular games are based on a Draw Poker hand and if you should happen to be dealt an electronic Royal Flush, you could rake in 40 cents!  It can take a very long time to lose your whole dollar bill- Dad’s maximum investment per trip to the casino. When he is not wagering one-cent bets or enjoying hot coffee, he’s watching people; taking in the sights and the sounds.  I do feel like my inheritance is fairly safe.

On this trip, Dad was simply a kibitzer. He gave Mom and I each a dollar, showed us how the game worked, and then stood over our shoulders and cheered us on as a dealt pair turned into 3 of a kind with the draw.  I hovered around 80 cents for quite a long time and finally switched to nickel bets to make the totals go up and down faster.  I have to admit that the bigger bets were more fun.  Uh-oh!

The ride back to Glen Arbor was once again just glorious.  I quickly packed my bag, said goodbye and launched for Bob Russell’s place on Mission Peninsula.

I was low on gas but decided to fill up on the way back home since I was running late.  I was pleased to see that gas prices were comparatively quite low in Traverse City.  The drive up Mission Peninsula hugs the beach so it was an visually spectacular drive.  I envied Bob’s commute.

When I arrived at the Neahtawanta Inn, I saw Bob shoveling snow off the walk.  He was indeed skinnier but he was a sharp as ever.  I received the grand tour of the inn along with its renovation history.  A big group had just left and Sally decided to go cross-country skiing while Bob and I sat in the library and sipped hot tea.  I learned that Sally’s family also had a cottage on Glen Lake in Burdickville, very close to our family’s little piece of heaven on earth. At one point, he got up to feed the boiler with wood and he showed me how it heated all the rooms (with hot water).  It toggled to fuel oil overnight so they would not have to stoke it in odd hours.

Bob first showed me all the new things he was up to with video production and website building, all promoting healthy ecology.  We eventually got into a discussion about the progression of his cancer.  It had metastasized to his brain in two places and he was receiving chemo and radiation treatments.  The latter involved a plastic mesh facemask that was bolted to a platform for precisely placed radiation pulses.  He was unbelievably positive and optimistic and had been studying some new treatments; one that involves the Ebola virus as a chemo-delivery system and another that works by maximizing your own immune system.  He also regularly uses Chinese medicine and practices yoga.

Sally returned from her ski expedition.  Temperatures were rising and snow was turning to slush.  It was dusk and time for me to head back to Grand Rapids.  We vowed to stay in touch and I drove off energized by the encounter.  I quickly observed that during our 2-hour visit, gas prices had risen 30 cents per gallon.  I pondered the nature of time and transformation on my foggy ride home.

In a shocking postscript, I just learned that less than a week after that visit, the Inn had a devastating fire.  If you read this article, you can pick up on Bob’s incredible optimism in the face of multiple adversities.  You can also gather how much his community appreciates him.

6-week checkup

Must be the caffeine.  Why else would I feel so happy and energized every day? I gotta say that I love eating!  The food obsession continues.  I’m finding joy in looking at food, preparing food, shopping for food, smelling food and putting food in my mouth. Swallowing is still a bit of a drag and I still suck at portion control.  Any plate of food looks like something I can handle judging by how hungry I feel, but if I don’t learn to stop eating I must face a gut ache and a time out.

I had a lot of anxiety leading up to yesterday’s appointment with Dr. Scott.  I expected everything to be fine (feeling so good and all) and yet I feared there would be a price to pay for my exuberant lifestyle.  If my good cells were digging on eating real food this much, perhaps my battle-worn, bedraggled cancel cells were enjoying the pick-me-up as well.

Dr. Scott had read my CT scans and played it a little coy at first, asking me if I had been coughing lately. (Answer: “not really, except when the food in my stomach reaches the scar tissue in my neck area.”)  But he quickly got around to telling me there was no cancer showing up in the 3D x-ray.  Fantastic (if expected) news!  The one thing that did show up on the scans looked like the beginnings of pneumonia.  He said it appeared like fluid in the bottom part of one of my lungs.  He listened to a few breaths with his stethoscope, which revealed little toward a diagnosis of pneumonia but he said he might have heard a little “pop” or two.  I have been feeling a little run-down at night. Am I in denial for being sick?

We talked a bit about the neuropathy.  He said if there was pain, there were some treatment options but I pretty much just have to live with the numbness aspects.  I must be careful on steps and rough terrain.  (I have bruises on my butt and knees to confirm that advice.)

He went on to do his usual palpations, looking for swelling in my lymph glands.  All seemed good.  My weight was up a little since the tube came out (a good thing).  Blood pressure was a tad high.  The “cancer markers” in the blood tests showed no cancer activity.

Dr. Scott prescribed me some antibiotics with a follow-up chest x-ray next week to wipe out and/or rule out the pneumonia.  I’ll be back to see him in two weeks where I’ll find out about the next span of normal life between scans.

Before he skated out the door, I asked him about how he would treat any recurrence of either cancer.  Would I do the same chemo regimen? He informed me that if it had appeared that we had “cured” the esophageal cancer, he would consider treating the lymphoma with chemotherapy.  It was only a part answer but it was the first time he suggested it was possible to cure the esophageal cancer.  Who knows for sure?

What I am taking: The small pill at the right is for cat allergies.  The bi-colored capsule is the door to the barn for which the horse has already left; acid reflux. The white horse pills are for the alleged pneumonia. And the three pleasantly earth-toned pills on the left are high-quality vitamins and minerals, courtesy of my friend Joel Van Kuiken who works at Amway and is setting me up in this department.  I'm not swallowing quarters.  It is there strictly for size reference and swallow sympathy.

Christmas spirit

It was a great Christmas day!  Apparently I am the only one in the household who still wakes up super early on Christmas morning and can’t get back to sleep.  Eventually I just went downstairs, made coffee and prepared a sweet baked pastry to share with the sleepyheads as they arose.

I fired up the gas log for the first time this season and Marlee, Abby, Alice, Mary and I opened stockings.  No grumps in the bunch.  We ate the Monkey bread and then did the gift exchange.  It seemed like we had a lot of gifts and lots of thoughtful stuff.  Abby gave Mary and me a ukulele and I vowed to actually try and learn to play at least a few chords that might add up to a song.  I downloaded a tuner app and uke lessons on my iPad.  Marlee set me up with the socks I asked for and Mary and Alice gifted art.  Mary acquired a framed, numbered linocut print from one of my favorite local artists, Alynn Guerra. Alice, along with her boyfriend Zack arranged for an original cartoon drawing from Jeffrey Brown.  Jeff, a now-famous (in certain circles) graphic novelist, used to be my intern at GRTV back in the 1990’s.  I wrote about this back in June. The cartoon features Elvis, our cat and me.  I was quite touched!

 

It was a laid back afternoon with Alice and Abby bidding adieu to hang out with their mom and their maternal grandparents, Harold & Carol, and the rest of us napping, tinkering with Christmas presents, doing dishes and gorging on sweets.

One late afternoon Christmas phone call I received was an automated call from St Mary’s Hospital reminding me of my CT scan on Thursday morning.  I must arrive early to have blood drawn.  It has been 6 weeks from my last x-ray showing no change or cancer growth and I expect this week's scan will reveal the same.

I had what felt like a pretty ridiculous thought: This could be my last Christmas.  Of course it could be your last Christmas or anyone else’s last Christmas but usually we don’t think about these things.  Mortality consciousness comes with this territory. I regretted having the thought (especially since I don’t feel sick at all) but upon further contemplation, I decided that remembering how short life is could really help one focus on the important things and especially avoid the petty negative interactions and the cantankerous moments.

So this was the sweetest Christmas ever!  And it continues… tomorrow is my extended family Christmas and Saturday is my in-law (Willey) Christmas.

Learning about CIPN

I’ve been feeling real good lately.  My last few days have been filled with what I’m calling the “I’m back!” tour.  I’ve been popping in on friends and looking for opportunities to eat varied cuisines.  It’s all good, but one haunting little reminder of my recent chemo past has been numbness in my hands and feet.  It came on late in the chemotherapy and I just assumed that it would subside along with the other side effects.  But strangely it seems to be getting more pronounced.  My fingertip sensations are a bit dull but I notice it particularly in my feet as I am walking around more.  When I get in bed at night, it feels sort of like the sensation of how you feel after you walk around in the snow for a long time wearing improper shoes.  Except when I reach down to thaw out my toes, I realize that they are not really cold.

So this afternoon, my doctor’s office called to make sure I had received the info in the mail for my next CT scan. At the end of the call, I asked about the numbness and when I could expect it to go away.  The scheduler I was talking to, who is not a nurse, informed me that usually it does not go away.  She had a family member who has permanent numbness, which is a real drag, but at least it is better than the alternative of having thriving cancer cells.  She told me it is called neuropathy; more specifically, Chemotherapy-induced Peripheral Neuropathy or CIPN. 

I had to look it up on the Internet.  I learned that the symptoms tend to escalate for about 5 weeks after the chemotherapy is done (definitely my experience) and while often they will improve slightly, usually you are stuck with it for the foreseeable future.  The therapy to treat it is more about living with the symptoms and less about curing it.  One fortunate thing is that often it causes pain and in my situation, that does not seem to be the case.  It’s more like a moderate but omnipresent case of “pins and needles”.  It sometimes makes me walk funny (although I walk funny anyway) and occasionally stumble.  I’ve noticed that my clutch pedal technique has suffered a bit, as has my card-shuffling prowess.

I have to admit that this news has taken my current “high” down one notch.  I keep thinking that long hikes are probably out of the question and my fantasy about learning to play the guitar will likely remain a fantasy.  For the first time I’m feeling like maybe I really am receiving disability payments for a legitimate reason.  And then again, I have no pain, so this is really a mild case of a condition that others suffer greatly.  It’s just one more new normal.

Tonight I took Abby and Marlee to see the coming-of-age film, “The Perks of Being a Wallflower”

It had pretty good ratings but since it was “teen” movie, I had low expectations.  As it turned out, I loved it!  Some pretty serious subject matter and plenty of very good acting.  There were some scenes of sex and drugs, which I'm sure made the girls uncomfortable to be sitting next to a parent.  But it also contained one of my very favorite film emotional flavors: sweetness.  It was a great palette-cleanser to the non-metaphorical hot pretzel with nacho cheese goo that the concessionaire at the theater talked me into due to its on-saleness to special customers like me.  Unfortunately, right now I can be talked into eating just about anything.

Inspiring show

Last night I had the second opportunity to project images for the Wealthy Orphans. 

Rick Beerhorst, the artist/band leader, got a gig for the band at Calvin College’s campus coffee lounge, The Cave.  A couple weeks back there was an album release concert at the Pyramid Scheme, for which I created a moving backdrop of “found” film images.  It was a fair amount of work for one performance so I was happy to reprise the sceening for a second show.

When I arrived at the venue, the projector and screen had already been set up by the college AV staff.  I tested it with my DVD and all seemed to be working. The Cave was a much smaller location for the performance and the low ceilings required that the film show next to the band instead of behind them.  Not ideal, certainly.  There was not a ton of seating to begin with and half the audience would not have a clear view.

It was great to see all the band members again.  I had only met them the one other time but all remembered me by name.  They each expressed enthusiasm about showing the film.  After the sound check, we had an hour to see who would arrive to listen to the show. There were free cookies at the coffee bar.

As it turned out, college students on a weekday night either had a lot of homework or had better things to do than see a free concert.  There was a smattering of people clearly present for the music and an additional bunch there for coffee, homework or personal conversations.  The band, however, rocked it despite the limited audience.  I kept peaking over my shoulder (I was manning the projector toward the front of stage) and the few people seated in the section with a clear view of the screen were engaged in personal discussions or in some cases, their glowing laptops.  The band didn’t seem to mind.  They were having great fun on stage and clearly enjoyed playing together.  I also was enjoying myself.  The more intimate I am with the music, the more I find myself falling in love with it.  I loved the serendipity of the moments when film images matched to the music in either rhythm or theme.  It didn’t matter that it was mostly a private show, just for me.

Afterwards, no one in the band seemed at all disappointed in the lack of turnout.  It was an opportunity to play together and explore the music and that was enough.  Spirits were high. 

Walking back to my car, I looked up in the sky to see a brilliant display of the winter constellations. I realized it was my first time in a long time to see Orion and the Pleiades and they seemed liked old friends.  I’d spent my spring, summer and fall attached to a food tube that kept me inside at nights.  It was a thrill!  Driving home, a falling star streaked past my windshield view.  I felt very lucky.

Follow up to "Hopping Mad"

I just got a call from Jayme at Priority Health.  She was able to track down the SNAFU and is getting St. Mary's Hospital paid and getting them to call the collection agency off the case.  She apologized on behalf of the insurance company for the hassle and they are looking into how it went wrong.

Whew!  My anger is now diffused and I am once again able to feel good about the care I have received and grateful that I am lucky enough to be covered under insurance.  I wish there was universal healthcare so everyone could avoid the stress and powerless feelings.