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.

Hopping Mad

Having breakfast with my friend Herm yesterday I described to him how great it feels to be beyond the symptoms of chemotherapy (That is for the most part… I still have numb hands and feet).  After feeling so bad for so long, this new crappy normal feels like ecstasy!  I cherish my appetite and lack of nausea.  My gut feeling is that I am back!  I am me again.  I have some side effects to deal with surrounding eating but at any given moment, I do not feel like a sick person any more.  It is wonderful!

OK, that is my bit of expression of positive vibes before I launch into a diatribe.  I am hopping mad!!

Yesterday I opened a letter I received in the mail and discovered that it was from a collections agency.  St. Mary’s hospital has sold my “uncollectable debt” to a bounty hunter.  The amount of $720 was denied by my insurance company (Priority Health HMO) for an operation I had back in May to fix a paralyzed vocal cord.  The operation was much more expensive than that; somewhere in the $4000 something range.  But one expense for that operation was denied: a “skin substitute” called Cymetra.  My doctor called it a stiffening agent.  My droopy vocal cord would stand up straight after being injected with Cymetra and would give my good vocal cord something to slap against to give me a voice.  You can read about it here from my April blog entry.

The operation was called, "Microlaryngoscopy with Left Vocal Cord Cymetra Injection".  It was successful and I can now speak clearly (although, as I have mentioned before, I still do not have my falsetto voice back).  Now you would think that a procedure that includes the name of the alleged, unapproved stiffening agent right in the name of the operation would raise some red flags in advance.  But I went into this thing with the understanding that it was 100% covered.

Imagine my surprise when months later, in August, I received a bill for $720 from St. Mary’s for $720 for the unapproved expense of using “Cymetra” in the operation performed in their hospital, "Microlaryngoscopy with Left Vocal Cord Cymetra Injection", as documented in an August blog entry.

Not understanding this, I called my insurance company for an explanation.  “There are cheaper skin substitutes and Dr. Winkle chose an expensive one.” They then suggested that I have Dr. Winkle write a letter with an explanation, asking for a review. 

I then called Dr. Winkle who told me he was very confused by this.  He always uses Cymetra for this operation and had never heard of it being denied before.  I asked him to write the letter.

I got a call back from my Priority Health RN case manager, Jayme, who helped me connect with someone in the organization who could delve deeper in the case for me.  I got on the phone with this nice person (I wish I had documented her name and the date) who promised to do some research and call me back.  She did just that.  On the return call, she started explaining about how other medicines could have been used in this operation and she went straight to the document while we were on the phone. We reestablished the procedure I had undergone and as she read the brief, she said, “Oh, look at this… Cymetra is on the list!  It is a mistake.” 

I was so relieved and I thanked her profusely.  She assured me that the matter would be handled by the end of the week.

Imagine my surprise when I got another bill for $720 from St. Mary’s dated October 22.  I immediately called them and explained that the issue had been resolved back in August.  They insisted they had no record of payment.

I once again called Priority Health, who looked up my case and told me that the bill had been paid back in September.  I thanked them and called St. Mary’s back to explain their error.  The person on the other end of the phone said he would look into it again. 

That was the last I heard before yesterday when I got the letter from the collections agency.  St. Mary’s will no longer talk to me as it is out of their hands.  Priority Health now says they see no record of a payment for $720 but will look into it.  Surely they have notes from my previous contacts.  But I know from experience that collection agencies have invested in my debt and they have no use for explanations.  My credit rating is already whacked and no one has any motivation to help me resolve this.

I am grateful for the fact that I am insured; they have paid a lot of money for all my treatment.  $720 is a small out-of-pocket price to pay and I would have paid it except for the fact that my operation was supposed to be 100% covered and I was told by my insurance company on 2 occasions that the situation was handled.

Grrrrrrr!!!!!!  I am so angry that I can’t sleep.

And I am so grateful that I otherwise feel that my health has been returned to me. 

Mary and I saw Ang Lee’s “Life of Pi” at the cinema last night, which is a beautiful story of survival and spiritual growth.  I am glad that I have lived to see it.

Post-tube better than normal

Hi friends!  I'm back again after a short writing hiatus.  Today was my one-month-after-chemo-cessation checkup.  I had a chest x-ray and blood screening last week and this afternoon I met with Dr. Scott to go over the results.  They were stellar!  My weight is stable (actually up a few pounds), the x-ray showed nothing new, and the blood results were all registering normal specification.  I now have 7 weeks doctor-free before the next CT scan.  That'll be in 2013.

I must say that life after feeding tube is much, much better.  My quality of life meter is up a couple of notches, at least.  I now have night life and I no longer have the parasitic tube and noisy pump apparatus humming in my ear 12 hours a day.  And I certainly don't miss the nightly ritual of filling the food and water pouches.  My taste is coming back and my appetite is full-on.  I still have to eat small meals and I usually get a gut ache after each dining session, but it is a small price to pay.

I find myself working again.  Clients keep calling and I keep saying "yes". I'm trying to do mostly "freebies" since I'm taking the government disability subsidy but I'm also trying to make up for 6 months of no work and no subsidy.  Last weekend, I created a cinema backdrop and did video projection for a friend who had a band CD release party at a new downtown local venue.  It was a smashing success!  The video added a lot and it was a fun collaboration with new friends and old.

Projected images compiled from vintage film clips and roughly timed with songs

So with a relatively clean bill of health, lots of work and a good appetite, life is looking up!  And the icing on the cake is that there is a new baby in the family; Mary's sister Margaret's daughter Chloe just gave birth to a healthy baby girl, Beatrice.  And Alice will be visiting for Christmas.  Looking forward to a joyous holiday season!

Unplugged (update)

Good news!  No infection apparent.  Better news!!  They are not going to re-insert the food tube.  I can't express how good it feels to be tube free.  I can now go out at night.  I don't have to listen to the pump whiring and squealing and beeping at me any more.  The nightly ritual of preparing the formula and creating excessive latex medical waste is over. At least for now.

Last evening, Mary and I went down to the basement to watch some television.  Pretty much a nightly ritual.  Coming up the stairs at bedtime, it was shocking to experience the lack of parasitic baggage to which I had become accustomed. I felt so good!  Tears actually came to my eyes.

Now, to go about the job of eating enough to maintain my weight.  I have permission to lose 5 pounds.  Lose more than that and the tube goes back in.

Unplugged

Warning:  There is some "Ewww" factor in this post so read at your own risk.

I've been having problems with my J-tube.  I've been watching the 10 inches or so of tube that  protrudes from my belly become lined on the inside with tiny globs of food formula.  They did not seem to wash through with water pressure from a syringe.  Dr. Scott suggested that Coca Cola had been known to eat them away so I tried a Coke flush a couple weeks ago.  It really only made those globs a darker shade of beige.

And then few days back, I was getting some cramping pains directly below the protrusion spot.  Shortly after, I noticed that the hole that the tube comes through, sort of an "inny" belly button, was becoming to become irritated.  I felt kind of sick too.  A white collar formed and the skin around it became red and very sore.  I suspected an infection.  It was Saturday and so I waited it out until Monday morning to call my Doctor's office.  They agreed that it should be looked at and made an appointment for me to come in Tuesday (today) at 2:00pm.

Monday night, after dinner, I hooked up the food pump as usual, being extra careful handling the tube as my belly was very sore.  I decided to go down to the basement to watch a little storm coverage.  Now I've always wondered what the tube looked like inside my body and was curious how long it extended in order to reach my jejunum. (The "J" in J-tube).  I knew that there was a balloon on the inside of my body cavity that prevented it from pulling out. While focusing on the belly side of the tube, I ignored the long tube that stretches to the food pump that I had strapped in a backpack hanging from my shoulder.  I managed to step on it while going down the stairs and felt a painful tug.  I was a bit surprised to discover the balloon was now on the outside.  The tug had been strong enough to pull it through.  The rest of the tube, about 4 inches, came out easily, followed by a small stream of ping-tinged fluid.  I grabbed a handy paper towel and plugged the hole and went back upstairs to ring the Lacks doctor on call.

In the picture (above), I am holding the valve where the pump plugs into the J-tube through a another long tube (the one I stepped on) that attaches through that blue rubber junction.  I normally tape it up good so that it remains attached while food and water is being pumped.  You can see the amber colored balloon, which is normally on the inside and if you look carefully, you can see the clear, rubber stopper which is normally on the outside.  (See picture below taken by Alice Peterson on October 9, if you dare.)

Since I'm showing you the bare essentials anyway, note the lump midway between my chin and my right nipple.  That's my "port" where chemotherapy drugs enter my bloodstream.  You can see the incision scar above my belly button where my stomach was pushed through my diaphragm.  If you look carefully you can see the laparoscopic poke holes where my stomach was disconnected from the tissues that held it in place.  Harder to see is the neck scar (my left, your right) where my esophagus was extracted and my stomach was lassoed, and pulled up and attached to what was left of the esophagus.  You can also see that I have room to improve my ab muscles and develop my six-pack.

My 2:00 medical appointment will now be about whether The J-tube needs to be re-inserted in addition to establishing whether there is some infection going on.  But I have to say that it feels GREAT to have that miserable tube gone.  The tenderness is gone too.  It feels much better in general.  Of course the downside of not having the tube re-inserted is that I will lose a bunch more weight.  That nightly pump ritual keeps at at a normal, proportional weight for my height and gives me energized mornings.  For now, all my sustenance must pass through my tiny stomach in my chest cavity.  Every meal is small and each one sits there at the top of my diaphragm for a half hour giving me an uncomfortable gut ache.  Meals are just no fun.  Everything is a trade off.  But for now, I am enjoying my naked belly and the lack of protruding rubber for the first time in 6 months.

And the CT scan says....

... all good news.  The CT scan results were, as expected, positive in that they showed nothing new and no new growth on the liver tumor.  I'd quote the report except they neglected to do the printout in my haste to get out of there.  It was the last appointment of the day.

In other good news, I just learned (while I was at the store buying feminine products for my ladies) that the Detroit Tigers swept the playoffs and are headed to the World Series.  I've seen none of it so far.  And if I were superstitious, I should probably consider not watching the World Series so as not to jinx the streak.  I only watched part of two different Tiger regular season games this year and they lost both.

So where do I go from the best possible CT scan results moving forward?  I wanted Dr. Scott to talk of some far off future where they'd check in again to make sure everything was still cool.  Instead, he talked about wanting to keep a close eye on me.  Maybe a chest x-ray and blood test in three to four weeks.  Three weeks!?  Really!!?  I was thinking it would be sometime after the first of the year.

The thing is, he's waiting for the Lymphoblasic Lymphoma to raise it's ugly head. The lion's share of the summer chemo was mostly about the metastasized esophageal cancer.  He chose a regimen that took a swipe at the lymphoma but to really attack and kill it is a two-year, intensive chemo blitzkrieg.  Quality of life would be very low and in all likelihood, I would not survive the metastasized esophageal cancer in that period.  He recommended I go with the "quality of life" and I am totally ready for that right now.  Quality of life, here I come!

You thought I was kidding regarding my whereabouts during the final innings of the Tiger's playoff sweep?

Strangely obsessed

What does a man think about after spending a summer being disappointed by the experience of eating?  I'll give you hint: it's a four-letter word that starts with "F".

 For the last few weeks I have found myself being food-obsessed.  When people look at my far-away expression and ask me what I am thinking about, it usually has something to do with what I am cooking for dinner.  You can ask anyone in my immediate surroundings who has spent some time with me recently and they will confirm that I am kind of crazy in this department right now.  I was caught the other day sniffing day-old caramelized onion residue from the edge of my cast iron pan and I was really enjoying the experience.

To be clear, I am not eating much of this food.  I am researching it, shopping for it, and cooking it for my family.  The sight, smell and consumption by others has been a surprising pleasure for me.  I've got my handful of go-to foods that I eat that aren't too disappointing and swallow easily.  I anticipate that this list will grow as I distance myself from chemo and thrush.  And I try everything, looking for that next taste or texture that will feel good in my mouth and move easily down my throat.  I just discovered that a shredded cabbage salad worked great having given up on greens and other vegetables.  Bread in any form, including pasta, is still in the "disappointment" category as are sweet things.  I can manage mildly sweet things like a flavored yogurt, but ice cream, chocolate, jams and candies are completely lost on me.  Peanut butter is my biggest loss.  I always considered it a staple and one of my favorite flavors.  I have to preserve that one in my memory and olfactory because in my mouth it just makes me sad.

Speaking of peanut butter, I just learned why Costco no longer carries the Kirkland natural peanut butter.  We've been missing it for a while.  (Marlee has never really had the regular non-oily kind and turns up her nose at Skippy and Jif).  As it turns out it has to do with stupid people.  Evidently, customers would buy it, open it, see the oil at the top and think it was spoiled so they return it.  Costco was throwing away tons of perfectly good, returned peanut butter every month (this notion kills me!) and finally decided it was not worth it.   The guy at the checkout says there is a new, 3rd party natural brand but it is now kept in the refrigerated section.

But I digress.  Do a few food anecdotes really betray an obsession?  The digression really is one of the symptoms.  I have all kinds of food anecdotes and all the time!  I'm following food blogs, watching food channels, being sidelined by Facebook photo postings of friends' dinner plates, taking gratuitous trips to the grocery store, reading cookbooks, asking people to describe what they had for lunch, and imagining how good a Reuben sandwich would taste.  Sometimes an odd ingredient or spice will pop into my head and I'll start Googling recipes to see what could be created with it.  Send me to the grocery store with a list and I'll come back with twice as much.  I bought pink Himalayan salt the other day.  It's pink and it tastes exactly like salt.  Supposedly it is mined in the Himalayas and has trace mineral elements that make it special.  I'm sure.

Later today, the food mill comes out and I'll be making homemade peanut butter and fresh squeezed cider from Honeycrisp seconds that are selling at Kingma's for a dollar a pound.

Obsession is not a good thing.  At dinnertime, when Mary comes home from work looking to unwind, she finds a crazy man in her kitchen.  I'm hoping this phase will soon pass.  As I can begin to eat more foods I'll begin to be satisfied in more ways than just visual and smell.  For now, the ritual of hooking up the food pump with 4 cans of Pivot 1.5 each evening is the anti-climax of each day.  And each morning starts with a serving of Greek-style yogurt.  I am perfecting my rice pudding recipe which will be an after-breakfast treat. Cardamon was a nice touch.

Thursday I'll have my CT scan results, which I predict will be stellar.  Next week is another Endoscopy dilation to stretch out my throat and make swallowing easier.  Clear sailing after that.

Looking to the end of the year

That last week of chemo was pretty uncomfortable.  It is true that the treatments are cumulative so that last dose seemed very hard to swallow.  Nausea will likely continue for another week or two.  My hands and feet are experiencing numbness; an expected but late-arriving symptom of Xeloda.  This phase should pass shortly.  I've been feeling chemically agitated at night and have not been sleeping that well. My blood numbers were a little low so I received another white cell booster shot along with some explanation as to why I was feeling more run down on the hemoglobin.  I'm really tired of feeling sick and am especially missing food satisfaction.  The "thrush" just won't seem to go away either but now that chemotherapy has subsided maybe my body will have a chance to recover.  I've added some over-the-counter pro-biotic supplements to see if helpful bacteria will restore some of the natural body chemistry. 

I probed my doctors and nurses to try and get some idea of what to expect now.  I guess it is an observation phase.  I'm getting another CT scan on Friday which will determine whether the liver tumor has shrunk and to make sure there are no new active hot spots.  If all looks good (I'll meet Dr. Scott for CT evaluation a week from Friday) then it may be 3 months, taking me to the end of the year, before I need another scan to see what is happening.  I like the idea of a brand new normal for a chunk of time.  I'm ready for it.  Wondering if it can spell the end of the food pump.  That is a ritual that I am very ready to give up, and at the same time am nervous about getting enough nutrition down the hatch to keep me going.  It would likely mean losing a bunch more weight.  I like the feeling of 170 pounds on me but I think my 6-foot frame could handle losing 30-35 more pounds if necessary... though it would be pretty difficult to put that weight back on for the presumed inevitable follow-up series of chemotherapy next year.  They like me being fat during chemo.

Today I am bidding adieu to Alice who has been visiting Michigan from California for the last 10 days.  We had some really nice times that included cooking, watching "Breaking Bad, designated driving, chemo lounging, and even finishing up her 2011 New York taxes.  She also took some photos of me on a beautiful autumn afternoon with her good camera. (I'll post a few of the better shots when she forwards them on to me.)  One evening, Alice indulged me a marathon viewing of my old Super-8 film collection, mostly shot in the late 70's through the 80's.  It was fun, especially looking at the stuff I shot when I was 18-years old and living in New York and experimenting with my then-new camera and all the possible frames-per-second shooting rates. Yesterday afternoon we stoked up a wood fire in the fireplace, first of the season, and played old familiar board games. 

I am relishing occasional, morning conversations with those of my friends with daytime flexibility. Yesterday it was Steve VerBerg, visiting from Madison.  I first got to know him at GVSU where he wrote for (and I believe, edited for some time) the college newspaper, The Lanthorn.  We got to know each other better after graduation through a mutual friend. Somehow we established a fairly short-lived annual ritual of a road trip pilgrimage to the Ann Arbor Film Festival. The films were always in the experimental genre and several of the titles we saw are memorable to this day.  Steve has been writing, editing and working in the newspaper industry since the 80's and it was interesting to me to talk about the state of journalism and the fate of newspapers; a pet topic for me.  I made him listen to my stories too.

I've been enjoying other visitors as well: Darius, Deb, Stephen, Bill, Sim, Nancy, Lee, Mark, Scott, Margaret, Jeff, Steve Klamer, Girbe, Bob, Teresa, Patrick, Ann, Bruce, WenJo, Kim, Oscar, Ralston, Janet, and of course all my fantastic regional family members... and everyone else who I am forgetting at this moment.  My friend Chad came by with an amazing little Farmer's Market care package along with a great conversation. Dan planted a garlic garden for me. Helen brought a troupe of volunteer high school labor to help me get my under-maintained driveway sealed.  Gifts are never expected or thought to be needed, but I was truly touched by these thoughtful, meaningful gestures.

By the way, I can get out too and even meet for coffee or breakfast, or a not-so-brisk walk somewhere.

The next couple of weeks I am exploring doing a little client work.  Time to get my editing chops back on the grid and see how that feels.  I still have pretty good energy in the mornings.  Looking to stretch them into good-energy afternoons and evenings.

Last week of Chemo kicks off

My wish for a last minute reprieve did not materialize. At 8:00am I showed up at the chemo lounge for a final week of poison torture.  I can do one more week standing on my head... well maybe sitting in a chair.

They were late calling me in for the requisite bloodwork and when I sat down in Dawn's chair (Dawn is the primo Phlebotomist), I got a bit of the story when the second Phlebotomist arrived (I don't know her name but based on one experience with her, she is on the opposite side of the competence scale from Dawn.) Dawn exclaimed, "Where have you been?".  The D-list Phlebotomist glared back with a "You don't want to know" expression.  I didn't want to know.  I was only grateful to be sitting in Dawn's chair prepared for an efficient, nearly painless blood extraction.

When I moved on to my favorite comfy recliner in the lounge, I popped a greek yogurt with strawberries and assessed my surroundings.  The lovely African American woman in my direct eyeline was quietly reading from a computer tablet.  A sleeping older man in the lounge chair next to her was being attended by Nurse Linda, my nurse, and that meant she would be in the vicinity more often.  Behind me on the other side of the half-wall was lots of chatter but it was all in Spanish and could be tuned out.  The empty chair next to me meant a wild card patient at some point but I was up for the risk.

Beth, the room house mother (not sure of her title but she sits at a Central desk and guides traffic and takes vitals) took my temp and blood pressure (normal-good)) and brought me an ice water. When Nurse Linda arrived with the positive results of the bloodwork, she applied the I.V. to my port and asked me lots questions about all my past issues and all the new ones.  This was a good start.  Linda and I are in tune with each other and I feel like I have a medical professional focused on my case.  I opened up a little more and asked her the same questions I asked Dr. Scott last week and only received quotes about philosophy of living each day to the fullest: "What can I expect next?".  Linda speculated that it might be 3 months between CT scans.  That would give me to about the end of the year to practice a new normal.  That is something I can work with.

The I.V.s start with lots of hydration with incorporation of trace minerals.  The good anti-nausea drug bags are added next, buffering the wicked, killer drugs that will be added hours later.

I fussed with my iPad that seemed to be having difficulty connecting to the free wifi network.  Turns out they added a new level of security that requires the pressing of an "I agree" button each time I log on, to absolve the hospital from some kind of liability I suppose.  I read my important email and deleted all the junk.  I caught up on reading news, wisdom, gossip and entertainment on the recent Facebook updates of my friends just in time to look up as my old actual flesh and blood friend, Steve Klamer, (from high school) strode in and plunked into my visitor chair.  Steve had just finished morning chores (dealing with the last of the corn silage) on his brother's farm. 

Steve lives in Seattle where he is a fine carpenter specializing in barroom counters and fine wood embellishments.  He also invented the "butt-board" which applies a fulcrum behind the non-tapered edge of a drywall board and creates a taper with an adjoining non-tapered board.  Perfect for large ceiling installations.  Steve also was a mountain climber with an impressive list of conquests. His love of solitary work, philosophy and deep thinking, and a serious shoulder injury has him considering a change of career,  possibly taking up long distance truck driving.  Steve's high school job was working on a dairy farm.  This was fascinating to me since everyone else I knew had jobs like dish washing and lawn mowing.  Once or twice I got up at 4:00a.m. to observe his pre school day routine.  I still remember his routine and all the crazy things he told me about the business.  Eventually, he even had the job of "AI", artificially inseminating the cows with this really expensive, champion bull semen, imported from the west coast that was preserved in tubes submerged in liquid nitrogen. I watched him do this!  Having this knowledge of the cow business in his back pocket prepares him to come to Michigan for a month or two in the busy season to help his brother, who runs a small Dairy farm by himself.

After setting Steve up with some coffee, we immediately launched into an extended discussion about the farming business in this new era of climate change (most farmers are in denial according to Steve) and genetically modified foods.  Steve believes cows are meant to be grass fed.  He also believes genetically modified seeds are resulting in a food chain that is effecting animals and humans in uncertain and slow to recognize ways.  It will be the new, less healthy "normal".  He speaks from some authority as a person with some pretty serious digestive conditions including diabetes and an advanced gluten allergy that incapacitated him for a few years. He's on a natural medicines kick that has transformed his life.  He also wants to cure my cancer.

Amy, my nutritionist popped in to discuss all my eating issues.  It was very timely.  I had wanted to know about probiotic supplements. Steve joined a very engaging discussion that also included Amy's intern.  The conversation eventually broke up as the first and main course of chemotherapy arrived.  At this point I'm feeling really good.  Fluids are topped off.  Blood chemistry is rockin'.  Buffer drugs are doing their thaang. Attitude is tip top.  I'm ready for the hour and a half drip session.

I pulled some Gala apples out of my bag and Steve and I munched and while we engaged in more topics of discussion. The first course of chemo dripped to a conclusion in no time it seemed. The chime came on and was eventually turned off to keep the peace by another nurse.  Nurse Linda had gotten slammed with other patients all at once and finally dropped by to tell me she still needed to finish up with one more person before she could administer course two.  That chemical needs to be administered manually through a syringe over a 10 minute time frame. She would be tied to me for that period so she needed to clear the transitions of other patients first.

That second direct infusion seemed to go very fast; all of a sudden, Linda was disconnecting my port.  She booted us out the door and I was still in high spirits and not feeling sick at all.  From experience, I know that discomfort will come tomorrow and build up to Friday when I come back again to have my fluids reset one last time for this series.

I invited Steve to follow me home for some homemade gluten-free chili.  I'm exploiting my current and perhaps last (for a while) pang of hunger before the chemo really takes effect.  With chili, Steve and I share some of the natural medicine that he has brought along with him.  Then he is off; out the door to do something about a field of soybeans.

I'm still feeling real good when my cell phone text message chime goes off alerting me that Alice's plane has landed in Grand Rapids.  She has arranged her own airport pick up.  So I engage myself with a large dish of corn tortilla enchiladas verde, knowing that by the time they are ready to come out of the oven, I'll have my regular family, plus one root family member present to enjoy them.

In cognito

When I look in the mirror I know I look different.  For me it is the lack of eyelashes and my formerly bushy eyebrows looking pale and thin.  The eyes are the window to the soul and I guess that the framing makes a difference.  I notice the differences in my body less because I don't tend to look at my body when looking in the mirror.  But I know I am much skinnier that the Chuck who used to not worry so much about eating a bit more than required to sustain his energy needs.  But if you haven't seen me in a while, I'm guessing that the missing 40 pounds is noticeable.  And then there is my signature haircut that I've sported since the 80's.  The "polished" look is significantly different despite the fact that I've been described as a bald guy since my 20s.  With the glasses on, most say I look about 10 years younger.

 Last night we went to see a sold out speaking engagement featuring John Waters at the Grand Rapids Civic Theater.  Mary had acquired a pair of free tickets from a friend and we had made all the arrangements to participate in a rare evening event.  For me this means strapping on the food pump early so I can later go out unencumbered by the annoying appliance.

So maybe I should have not been surprised as acquaintances passed by me at a crowded public event, one after another without a flash of recognition.  Some, I nodded to and those who nodded back appeared to be reciprocating with politeness rather than connection.  Not a single person approached me or spoke to me (without introduction).  It's not that I am a super popular, hip, well-known guy but I do know a fair amount of people in this community and it was strange to feel like I was in disguise as people I knew fairly well slipped by right in front of me.

I've kept my cancer story off Facebook for the most part.   There is a link to my blog there if you search for it but so far I have preferred to make my social network presence low-profile and free from my health issues.  There are many people in the "acquaintance world" who would have no idea.

There is another reasonable possibility for invisibility and that is the social avoidance of discomfort.  Perhaps I was noticed and a conscious effort was made to pretend I was unrecognized while in the vicinity. What do you say to an acquaintance you haven't seen in 6 months who clearly looks a lot different; hairlessness and weight hinting at the possibility of cancer?  Who wants to have that conversation at a fun event?  I get that.  I have pretended to not notice people when I have wanted to avoid an inevitable and unwanted subject.  In fact, I find myself feeling empathetic with those people and I would avoid eye contact with some who I do not want to put in the uncomfortable situation of asking me about how I am doing.

The show was very engaging and funny.  Waters is so incredibly charming and comfortable in his own, weird skin.  His material is definitely not for everybody.  Despite being unabashedly vulgar, there is sweetness in his acceptance of everyone and humor in his flipping of popular convention upside down.

We were home by 9:00pm and even squeezed in a little ArtPrize and dropped off my car for some work at the Auto Doctor.  On a physical level it was a success.  I was tired but not overly so.  I strapped the food pump back on when we got back home and we plugged back into our more typical evening routine.  I did fall asleep before the Daily Show, however.

I think my hair is threatening to grow back.  The downy softness of the back of my head is beginning to feel a bit prickly.  Many friends are advising me to keep the look.  It is definitely easier to maintain than crappy hair.  Hope the eyelashes come back soon.

Fish bowl

I'm finally off needing anti-nausea meds for this "final" chemo break and am grateful for that.  Another week and a half of getting back to "normal" and then starting on October 1, one last week of infusions and pills and then I get an extended break to see see if this successful treatment holds for a reasonable amount of time.  This last cycle is "for good measure" but I find myself fantasizing that Dr. Scott will call and say, "You can be done now."  A week doesn't sound like much, and it is not, but those last few days in a cycle can really bring you down.  I don't feel like doing anything other than finding a comfortable position to sit and try to distract myself from not feeling sick.

I understand that I really need to step up my physical activity.  There will be no normal until I can get out in the community and resume participating in life rather than observing it through Facebook, radio, or television.  My muscle mass has taken a huge hit and I need to get strong again.

ArtPrize has arrived in Grand Rapids and I have always enjoyed walking around and seeing what people have come up with.  I just read an article which mentioned that the voting aspect of ArtPrize has become less important to most people (There are more dollars given away than there are total votes for all entries) and I am definitely in that non-voting crowd.  The "winners" are usually a disappointment since they seem to be rewarded by their mass appeal and sometimes their marketing and pandering.  For me, it is less about who wins and more about seeing imagination on display. It is a circus and a circus is fun.  Who needs a winner?

My fall clients have begun to call me about doing work again.  I am torn.  It sort of forces me to look at the unknown future and make a decision on how best to spend my time.  I truly enjoy being a productive, creative, contributing individual and if I'm not working, I'm just an observer.  And yet I don't know if I'm looking at months, years or decades in front of me.  Actually no one knows how much time they are looking at.  I often miss the state of being unconcerned about mortality.  Should I travel instead?  Volunteer?  Try to finish some old, long-term unfinished personal projects?  I have never been a good capitalist so why should my concern be about making an income?

The acclaimed TV series, "Breaking Bad" has been recommended by many people as a a high-quality, dramatic series that is also available on Netflix instant streaming.  Not to mention the fact that it deals with the subject of cancer and making and income why you still can.  My daughter Alice got hooked and had been encouraging me to check it out.  I finally decided to commence with a "Breaking Bad" marathon during this last week of feeling like doing nothing and can concur that it is very engaging material, artfully shot, and presented by good actors.  I am already into Season 4.  I must admit that I find the cancer and legacy subplots to be pretty relatable and a nice dramatic compliment to the over-the-top (and unrelatable) cliffhanger, drug world stuff that makes the show so thrilling.  The main character (Walter White) ultimately decides that financial stability for his family is his most important legacy (at the expense of everything else) and it is fun (and scary) to see him pursue this to a point of no return.

So today I am going drug-free, TV-free and am putting aside feeling sorry for myself.  I'm going to catch up on some paperwork, talk to some clients and get out on the sidewalk and get just a little taste of Artprize.  Time to climb out of the fishbowl!

Light at the end of the tunnel

Yesterday I started the "last" two rounds of chemotherapy, which will last 5-weeks, after which I will have a hiatus from medicine and doctors appointments.  After that I'll be tested periodically for return of cancer activity. The nausea will go away and the hair will grow back but I'll remain skinny and bald... a bullet head if I want to continue shaving.  I'm told that although no cancer showed up as active on the PET scan, this is not necessarily considered remission.  Rather it is called a "complete response".  The scans can detect the liver tumor like a cottage in the woods.  The lights are all turned off so the cancer cells may be dead or sleeping.  But the cottage is still there.  The margins are more highly defined as a result of the chemo.  I'm told surgery and radiation are not options but I'm still not sure why.  I'd like to burn that cottage to the ground!

The Non-Hodgkins Lymphoma is still a mystery.  It has not presented itself again since that original infected lymph node that was removed.  The chemo appears to be working with that one as well.

I'm getting shots of Neulasta.  This stuff increases the white blood cell production in my bone marrow to help fight off infections that may come as a result of high chemo doses.  Blood numbers all look good and in the normal range.

My other issue of concern has been weight.  I started all this weighing in at 210 which I hovered around for about a decade.  I'm 6 feet tall and I was thinking I would really rather weigh about 190 all that time but between surgery and chemotherapy, my weight has dropped down to 170 (which looks good on me) and I'm thinking that is an excellent target weight for me.  My feet don't hurt nearly as much. But during the last round it dipped to 165 and Dr. Scott and my nutritionist, Amy, are on my case to get it back up to 170.  With the extra week of chemo vacation I added an extra can to the nightly pump feed and concentrated on my daytime regular food intake, hungry or not and managed to weigh in at 169.5 for the beginning of chemo.

Speaking of hunger, I've been managing my appetite by revisiting Marinol, which is THC synthesized from marijuana in pill form.  At first I thought it was only making me groggy but Amy encouraged me to stay on for 3 weeks before I would really feel the clinical benefits.  She was right.  During the "break" it was the only drug I was taking and I was hungry at all the right times and sleepy at bedtime.  I functioned fairly well despite the occasional "high" side effect.  It seemed when I needed to function I could. But if I stopped to stare at something I could lose my train of thought and go into a zone.  I'd also asked Dr. Scott to sign my Michigan Medical Marijuana card authorization but he refused.  He said there is too much capacity for using straight marijuana in an illegal way, buying for friends, etc. and besides, the smoking aspect adds carcinogens to the body that no one needs.  He's sold on the prescription Marinol.  Really, I was more interested in exploring the medical marijuana phenomena than smoking it.  I'm fascinated by the new culture and the very strange rules for obtaining it and understanding the challenges of the "caregivers" who grow and process it. I wanted to right an article about the subject.  It's not hard to find a physician to sign the form for you for a fee but I think I will comply with doctor's orders for the time being.  Marijuana is cheaper than Marinol but with insurance copay, the opposite is true.

More concerning to me is stomach capacity.  I can maintain a weight of 170 with the addition of 4 cans of "Pivot 1.5" pumped into me each night but what happens when they pull that feeding tube?  I suppose that when I am off chemo, my weight will be less important and I can drop down to the minimum recommended weight for a 6-foot tall person; something like 140.  My tiny, tube-shaped stomach does not afford me a satisfying meal; at least not now.

My excellent take-away lesson from my recent 3 weeks off chemotherapy is that the new normal does indeed change when you get off chemo.  It took to the end of the three weeks before I really started feeling good and "not sick" and interested in eating.  It was enough of a positive observation to get me through the next 5 weeks of ingesting chemicals designed to kill my cells.  After one day, I already feel myself descending into that grumpier, shakier, lazier, weaker, sicker self but I can put 5 weeks on a calendar and get through it.  I'll be getting disability payments by that time so maybe I can budget in a little travel.  I'll certainly be looking to volunteer and find new learning activities so I can continue to grow as an active person with value to society.  That is the light at the end of the tunnel.

Excellent outcome

I just returned from my appointment with Dr. Scott following up on my recent PET scan.  My pre-appointment procedures were less than stellar.  I really missed Dawn when they first needed to take some blood.  Dawn was on lunch break and her sub could not manage to get blood from my right arm and each poke adjustment stung pretty good.  The left arm proved better (though it stung too) and I was a pathetic sight with bandage-covered cotton balls on each arm.  And then at the weigh-in we discovered I'd dropped another 5 pounds.  Mary predicted this and my current belt size backed it up.

Dr. Scott had all good news.  The PET scan revealed no cancer activity whatsoever.  The liver tumor had not grown and also did not light up at all on the scan.  Nothing abnormal lit up in my chest either.  The chemotherapy was clearly doing what it was supposed to and Dr.Scott said that considering the doses, I was handling it very well too.  Beyond the nausea, none of the more serious side effects had manifested.

He decided to give me an additional week off chemo to try and build up some weight and then I will start again on September 10 with two more rounds (5 weeks) but at a lower dosage of the nasty infused chemicals. 

I wish I felt like I could eat more food!  It seems progressive in that I feel like eating less as the day wears on.  I'm going to up my overnight liquid food pump diet to 4 cans and try harder to eat more lunch and dinner.  Solid foods are still difficult so I'll be concentrating on cream soups, fruit and my new favorite beverage, V8.  I need to work on my exercise regimen as well.  I need to get on my bike more often while the season still permits it.

Nausea reprieve

My early morning PET Scan on Friday was the exciting culmination of a week defined by sitting in a chair wishing food tasted better.  A hospital lab visit was getting out of the house after all and feeling like some forward momentum.  Abby agreed to sacrifice her last Friday "sleeping-in" opportunity before the GVSU semester to drive me to St. Mary's at 6:45a.m.  Normally I would not need a driver for a PET scan but they had me taking some Benedryl to counteract allergies to the dye that they use.  There is also an hour and a half of absorbing a radioactive isotope through an I.V. that would give us some father/daughter bonding time and a chance to watch a DVD together.

There was a minor SNAFU at check-in as I was indeed on the schedule but there appeared not to be an authorization code available from the insurance company.  Probably nothing, but I had to first agree to be responsible for the whole cost if for some reason Priority Health didn't want to pay.  This is the third such "Auth code" issue that has come up lately.  It was seeming for a while like my insurance experience was going to be all good but now I'm feeling a little passive aggression coming from them.  I recently got the bill for my whole esophagectomy surgery and resulting hospital stay (5 figures) saying that coverage was denied due to lack of a prior authorization code from my doctor.  Since it is supposed to be 100% covered, I'm choosing not to worry about that one.  And then I got a bill for $720 for a denied injection I received during the surgery to fix my paralyzed vocal cord.  Apparently my doctor has a choice of 3 or 4 cellulose stiffening agents he could have used and he picked one (the one he said that he always uses) that Priority Health says is not on their list.  It is going to take appeals and red tape and I may end up just paying for that one.  It seems strange to me that I can go into an approved operation with an approved doctor at an approved hospital and then someone scrutinizes the bill afterward to see what they can avoid paying.  Isn't the point of an HMO that this stuff is worked out ahead of time?

Abby and I watched "Easy A" (a movie with a smart script that is better than it looks judging from previews) and ordered breakfast from the menu for after the scan.  All went well and I had no allergic reaction this time, thanks to the pre-meds.  So next week, Dr. Scott will have a nice 3D picture from "eye-to thigh" of my body in its current state of cancer metastases. That appointment is on Friday and we hope to see no hot spots lit up on the scan.  The only known spot is currently on my liver and possibly some lymphoma residuals in my mediastinum region.

I'm bracing myself for the reality that whether the cancer has grown or shrunk, it probably means more chemotherapy.  My nurses keep mentioning that I am carrying a heavy load in the nausea side-effect category of the drugs I'm on.  True, that.  I was grateful to be taken off the Xeloda earlier in the week and it has taken until this morning to feel like the nausea phase has cleared my system.  I woke up with an appetite and enjoyed a pretty good-sized smoothie for breakfast and when Chicago friends Dan and Mary and their son Josh dropped in late morning, I discovered I was ready for some lunch and I finally got to enjoy that baba ganoush I had made earlier in the week along with a fresh cucumber that the neighbors delivered from their garden.  I even had some bagel with cream cheese.  Food has not tasted this good in a long while!

The new physical effect I am experiencing is body weakness.  Maybe it is an iron deficiency or perhaps too much sedentary behavior.  But I now have to stand up more carefully to avoid become lightheaded and I feel like my muscles don't have the strength to do much more than fundamental tasks.  I feel pretty good sitting in a chair but moving around is now something that I pay attention to.  With the passing of the nausea also comes the passing of the grumpy, anti-social stage so I am happy to be feeling like interacting with people again.

I'm also looking forward to the esophageal dilation I will be getting on Tuesday.  I've lost count of how many I've had (7 or 8?) but they always leave me with a larger swallow capacity. It has been 6 weeks since my last one.  That, coupled with the extended chemo vacation and a presumed end to the chronic "thrush" outbreak may mean some expanded food experiences; something I crave more than anything else.

Finding ground again

I saw a bald eagle the other day. It was very much a surprise.  I've been waking up very early lately and upon mentioning this to my friend Stephen, he offered to scoop me up on one of his fly-fishing jags some morning.  I've been trying to say "yes" to more suggestions of getting out of the house and into nature.  Sitting in a comfortable chair in foggy morning light alongside a quiet river held some appeal for me.  I was barely settled in my favorite butterfly bag chair along the upper Rogue River when the giant raptor wings entered my peripheral vision; dipping under the river tree line, 30 feet away and exposing the striking black and white shapes that only define one kind of bird.  My camera was at my side, zipped up tightly in the carrying bag.  There would be no second pass.  The experience was only meant for the awake individual, not the documentary producer.

I've been struggling to write another blog entry for a few days now.  I wake up early thinking I know what I want to talk about.  I end up just starring at my screen.  I feel lousy.  I suppose it is the cumulative nature of chemotherapy treatments and it is definitely compounded by an annoying mouth condition, which won't go away, and makes eating a constant disappointment.  I can feel my energy levels dropping and I realize that this energy is the thing that makes me feel like a robust living person, no matter what the discomforts are.  I can't help going to a place where I imagine that this sapping of energy is what dying feels like.  Is my body shutting down? Why does my chest fell so tight? Inklings of fear and paranoia creep into my psyche.  I look in a mirror and find I still look pretty damned good.  Definitely not dying.  Still, just getting out of a chair feels like an effort and conserving breath seems like a good idea.  The flirtation with depression has begun.

Yesterday morning I sat out on the deck reading in a very comfortable chair with a breeze and perfect temperatures.  As lunchtime approached, my neighbors seemed to have launched into a robust pool party.  There were multiple barking dogs and children with much splashing and shouting.  In between the commotion I could hear and smell the preparation of hotdogs.  Hotdogs sounded so good to me!  Fixed just the way you want them, maybe with just a stripe of mustard this time or perhaps sweetened up with some pickle relish.  My culinary life has strayed so far from the possibility of a simple hot dog.  My kids are vegetarians, my wife a celiac and me, a gastronomical gimp with no stomach capacity to speak of.  I imagined eating a whole hotdog and then felt some anger at the impossibility of the fantasy.  In the refrigerator I had a ready-to-bake, homemade gluten-free veggie lasagna and a fresh batch of baba ganousch made from an eggplant out of my other neighbor's garden -superior foods, no doubt- but a junky frankfurter squirting out of a processed white bun never sounded better.

I don't like this new normal at all.  And yet finding peace there is key.  Just give me a little more energy and a little more stomach capacity and I can get there!  In the mean time I'm going to be a little grumpy and anti-social and it will take some time to get me pried out of this chair.

The good news is that Dr. Scott took me off the Xeloda on Monday, a week early, to help my mouth and nausea recover.   I hope my appetite and energy will soon follow.  Today I'm on a 24-hour no-carb diet in preparation for Friday's PET Scan.  The idea is that you give your body no carb reserves so that when they inject you with glucose during the scan, your hungriest cells, the cancer cells, all go "nom, nom, nom" and light up a radioactive isotope in a 3D picture.  Then you have a map of where all the cancer is living in your body.  This will help determine the effectiveness of the chemo I'm on.  In a week I'll have it interpreted and we'll know some things.

One last thing I wanted to mention.  I bought myself a watch.  I've always been sort of a "watch" guy.  It is a gadget that pins you down to a moment.  Being in the moment is an important reminder and having a Wenger Swiss watch, leather strap, quartz movement, water resistant and accurate to the second with a face large enough that I can read the date on it, makes me just a little bit happy.

It's 9:27a.m. and 10 seconds on August 23 and I'm off to try and swallow some plain Greek yogurt.

Animal stories

Not much new to report so I'll regale you with a couple of animal stories.

Last week we had that one really rainy day.  There was a giant cloud mass that was rotating counterclockwise with its center right on Grand Rapids for a change.  Umbrellas were dug out from way in the back of closets.  All the brown lawns were quite happy but havoc was wreaked on the roadways.  A trip to the grocery store was re-routed because of giant flooded areas across broad stretches of major streets. 

I went upstairs in the mid-afternoon to try and grab a nap, due to another early, early wake-up time.  (I had spent a couple hours lounging on the 3-season porch starting about 4:00 am.  The sounds of the rain had been lovely atmosphere for reading. ) So I settled into my bed, which is up on the second floor of our house. Out of the corner of my eye I saw some movement on the tiny, brick-width ledge outside the window.  It was a grey squirrel, lounging and grooming for a nap out of the rain.  He was facing out into the weather with his back against the window.  (I was close enough to ascertain it was a "he".) I watched him up close for a while and got to thinking it would be interesting to see how he would behave, going from a relaxed state to suddenly realizing he was in close proximity to a top-of-the-food-chain predator.

I placed my face inches away from the glass and showed some teeth.  He was completely oblivious, facing the other direction.  He was going to sleep, which is what I really needed to do.  My jaw muscles were starting to feel some fatigue so I finally resorted to a little tap on the window.  The squirrel turned to look.  There was sort of a surprised double take... for both of us.  And then he did something I did not expect.  He began to furiously paw at the window right at my face.  I'm pretty sure he wanted me to just go away.  I eventually got the message and slunk back to bed.  He curled back up and went to sleep.  I eventually did the same.

Story number two:  My friend Lee came over to hang out for a couple of days this past weekend.  He had driven over from his new loft apartment in downtown Milwaukee via the scenic U.P. route, along with his dog, Chui (pronounced "chewy").  Chui is 14 years old and moving pretty slowly these days.  She's a fairly big dog; husky-sized, with lots of fur.  Lee had tied her up on the back deck when he arrived and she seemed fairly content to lie there in the shade.

Mary, Lee and I were having snacks and beverages on the other side of the slider door that is the main egress to the deck where we could easy observe the mellow pooch.  We got to thinking it might be an okay idea to introduce Chui to our cats, Elvis and Luna.  They are strictly indoor felines and we surmised that they would scramble to another corner of the house and maybe gradually come back to investigate on their own time.  So Lee went out, unhooked the leash and brought Chui in to say "hi".

Our generally more skiddish female cat, Luna did the expected thing and high-tailed it for another room.  However Elvis, our male cat, who is much more curious and always present to meet visitors, surprised us.  He immediately reacted in jungle cat fashion and produced a guttural growl and began slinking menacingly directly toward Chui.  The growl turned into a hiss and the hiss turned into fisticuffs the moment he was in proximity.  He flat-out started punching the bewildered dog. "My turf" was the clear message.

Chui was banished back to the deck and Elvis let Lee know that he had no hard feelings by rubbing up against him and jumping into his lap.

So those are my two recent unusual animal stories.

Lee's visit was very nice.  We drove around the city, ate some good food, hooked up with a few old friends from the days when Lee was a Grand Rapidian; 16 years ago.  It was the tail end of my week-long vacation from chemotherapy.  On Monday morning, Lee came with me to the chemo lounge to keep me company for a couple hours before heading back home; the shorter Chicago route this time.  It was a routine infusion with the very professional Nurse Linda.  She scored me a different prescription to combat the Thrush, that has returned to my mouth after a 3-day hiatus from the last cure.  Abby brought in some broccoli soup and fruit salad for "captive" lounge chair lunch and and kept me company until the end of the chemo shift.

Now I'm back to the familiar routine of making the best of feeling lousy.  So far, it seems to be a little bit less lousy this time around.

A fine mess

At 3:00a.m. this morning I was having a dream.  I had a monumental cleaning task in front of me.  There was a RV/Camping Bus that needed a pretty serious straightening up before it could be used for camping.  For some reason, I had heroically taken on the task of cleaning the kitchen, which was piled high with dirty dishes, pizza boxes and clutter. I had pulled out all of the waste items and stacked them on top of the bus so they could be dumped in the garbage.  I looked down and saw my younger brother, Rob, standing below looking very idle.  In the dream he looked to be about 15 years old.  I asked him if he would throw away this pile of garbage for me.  He ignored the request and started walking away.  I started to shout after him but he just sped up.  I felt myself getting very angry and decide to jump off the top of the bus and chase him down.

CRASH!

It is 3:05a.m. and I am awake on the floor of my bedroom, on my hands and knees amongst the wreckage of my overturned bedside table and food pump apparatus.  Evidently, my dream jump manifested itself with a real jump off the side of the bed.  In the dark I realize by smell and feel that my bedside portable urinal has overturned on the hardwood floor.  (Since I tube-feed and hydrate all night, I have to urinate fairly often and will use the portable urinal rather than drag all my pump stuff to the bathroom.)  I'm tangled in tubes and electric wires and scrambling to find and right the overturned urinal in the dark.

Mary is awake too, probably freaking out from the crash.  She's telling me to stay put and I'm telling her to turn on a light.  So we commenced detangling and sizing up a real mess that definitely could not wait until morning to be remedied.  I cleaned up myself in the bathroom (along with my electronics, which had been charging on the bedside table) and then went down to get a bucket of water with Murphy's Oil Soap and a sponge.  Mary was on the macro clean-up detail with towels and had already unplugged the spaghetti of extension cords and isolated all the pee-covered fallen objects from those in the all-clear zone.

By 3:28a.m. I plugged in the electric clock and reset the time.  We had pretty much restored order but found ourselves wide awake.  Mary decided right there that she would be taking a personal day from work. I'm sure when we look back it will be a funny story.

I'm a bit puzzled by why it was my brother, Rob, in the dream.  I am typically the grasshopper to his ant.  He is a farmer and the hardest working person I know so it doesn't make sense that I cast him in the "lazy" role in my dream.  Hmmm....

On a completely new and unrelated subject, I have been disturbed by the recent mass shootings.  The most recent one at the Sikh Temple was slightly more disturbing to me as it seems to have been motivated by hate (as opposed to the Colorado shooting that seemed to be motivated by crazy).  There is so much anger and distrust and misunderstanding out there!  What are the forces driving these behaviors to be actualized?  And then a local example surfaced that has me simply stunned.  Can't get it out of my head.

The East Hills Neighborhood put on an event called "Gay Day" to celebrate diversity.  It was a block party with fun and food and community.  Naturally protesters showed up.  Someone videotaped an exchange with a couple of the protestors.  This exchange was a religious argument that I had never heard before and has left me absolutely flabbergasted.  The man used the Bible to justify rape.  It is a pretty disturbing clip. (The clip has been pulled from the Internet but the content is summarized at the link). I put it here in my blog because of the fact that I can't stop thinking about people who are out there in this world with such a skewed understanding of living with their fellow human beings.  Sorry to end with a downer.

A summer outing

I successfully managed an evening outing to the Lake Michigan shoreline last evening.  My friend Jon invited a bunch of his friends, many of them musicians, to his summer cottage on a bluff, and specifically included a college-era group of compadres who came from far and wide.  It was a reunion of sorts for many of us.

I had some anxiety about going in the first place.  I could easily talk myself out of going. Where do I start?

• Hey, I'm in the middle of chemo!
• I'm always tired at night.
• I'm nearly an hour from being home if I suddenly feel like hell.
• The party is going to have a lot of great looking food and I can't eat very much of it.
• I'm completely bald and 40 pounds lighter- do I telegraph the aura of a cancer victim to those who may not know?
• Mary would probably have a lot more fun going alone and not worrying about me and having to leave early.
• Does my mere presence put a chill on things for some people? After all, who wants to be reminded of mortality at a party?

I managed to set aside my anxieties and focus on a strategy to enjoy a big chunk of evening out.  I chilled for most of the day, reserving my energy for later.  I started early (and often) on the oral thrush medication.  I hydrated as often as possible. We loaded and packed the food pump so I could "eat" on the way there and on the way back.  I packed a goodie bag of anti-nausea drugs. I focussed on the fact that I would get to see some people who I don't see very often and of whom I am quite fond. I reminded myself that I could sit in a chair at a party just as easily as I could sit at home in a chair.  We arrived around 6:00pm.

In my opinion it was perfect climate conditions; overcast (a bald man's friend) and warm with a nice breeze and a invigorating potential for severe weather.  Planting a bag chair at the top of the bluff, I surveyed the scene for at least an hour, absorbing a vibe that I found most pleasant.  I watched people arrive with instruments and food items, many of them with familiar faces and stances that had me flashing back nearly 30 years.  A small crowd also gathered at the beach.  I observed that the water was obviously, abnormally warm by the way congregants entered the waves without hesitation and how quickly they wandered to waist depth.

A pair of huge, shaggy dogs barreled down the steps to join the humans.  The looked a bit like Newfoundlands, except perhaps a bit smaller and with a striking black/brown/white color palette. (I grabbed a video of one of them as she later came back up the steps).  It gave me kind of a thrill to watch them bound through the sand without a care and indiscriminately introduce themselves to everyone on the beach.  They appeared so happy! Even small children and little dogs welcomed the visits.  Later I asked about the breed and was told more than once... I thought it was Austrian-something-or-other-dog... but I could not remember and could not find a picture on a dog breed website.

I eventually joined the party, starting in the kitchen- my comfort zone.  There was a huge fruit bowl, which was full of my easy-to-eat favorites.  I re-introduced myself to those familiar, if slightly older,  faces. College memories of these characters came pouring back.  I got some great hugs from some of the more special lost friends.  It was all extremely nice.

It didn't take long for the music to get started.  It was a smorgasbord of folk styles but many people jammed and soloed including Leo, the 12-year-old son of a friend who turned out to be both a delightful person and an amazing fiddle player.  He seems to be a bit of a prodigy because it turns out he can play just about any other instrument as well.  We talked a bit about his interest in music recording and video.  There were both musical leaders and followers and it was amazing to listen to it all come together with a mixture of the familiar and the new.


The evening climaxed for me with the weather front that we watched coming across the lake straight at us.  The clouds were rippled like dreadlocks and I could see the wind patterns darkening the water below.  It was all moving in 3D straight toward us.  There appeared to be no lightning so it felt safe to perch on the bluff and wait for impact.  When the wind hit it was exhilarating; warm strong gusts with no rain.  I let it whip through my untucked shirt and breathe vigor into my whole body.  It was a real high!  A few chairs may have flipped over and maybe a few plates of food but overall it did not dampen the party in the slightest.

A text message came in from Marlee about the same time that I felt like it was about time to go.  She was returning earlier than we expected from her overnight outing to her girlfriends's place up in Charlevoix.  If we left right away, we might just be able to get home before she did.  Mary and I said some quick goodbyes and felt our way back to the car.  Despite having a strategic getaway parking spot, we discovered there were a LOT of cars that came after us.  My final, manly triumph came as I abandoned a multi-point turn-around attempt and backed the car all the way down a long, auto-lined, single lane driveway with deep valley's on either side in the dark.  Marlee beat us home by about 15 minutes as we strolled in at 11:00pm, but all was well.