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.