email sent July 16, 2016

Subject: What a Beautiful World This Is

… or, What Can the Matter Be?

It’s Saturday. A week since arriving home from the photography workshop. I’m finally able to think and write coherently. But more on that in a bit.

The workshop was beyond excellent and beyond photography. Keith Carter is one of those guys you always love to meet. He is kind, funny, emotive, quirky in a great way (he often pulled out his guitar and serenaded us with the blues and old country music), generous and compassionate. And way experienced and smart. He critiqued our work in a way that we accepted and learned. And he seduced us with his smooth, cheery Texas draw. Some of his primary lessons were:

  • Start with photographing what you know. Then photograph your dreams.
  • Become comfortable with uncertainty.
  • Present surprises. There aren’t many surprises in perfection.
  • Break rules.
  • Don’t dwell. You have the rest of your life to figure it out.

He gave us three assignments. Each involved interpreting a. poem very rich in imagery. The task seemed daunting at first, but it turned out to be quite easy with an open mind.

Keith suggested that I photograph my autobiography. No one else can do it. I’m going to give it a try.

The workshop was about photography and life.

I had arrived in Santa Fe having marked my trail quite well. The need for frequent marking, thanks to Prednisone, persisted throughout the week, resulting in at most one-hour sleep cycles. To relieve my super dry, leathery mouth I steadily drank carbonated soda. I couldn’t have been more stupid. I became increasingly hyperglycemic, which led to a very demanding 390-mile drive home on Saturday that took 8 hours, instead of the usual 5½ hours. So, as I once again was the stupid one, Vicki was the savior. She insisted that I go to the ER, which we did on Monday. I learned that my glucose level was 720, which is in coma territory and beyond, compared to high normal of 120. No wonder I felt dizzy, wobbly, had blurry vision, felt extremely weak, short of breath, couldn’t think straight at times, and experienced mild hallucinations. I spent three days in the critical (not intensive) care unit, and learned that I can add diabetes to my, our, list of challenges. Sheesh! I’m down twenty pounds since these cascading episodes began, but not by following a rational regimen, for sure. (So much for my pants staying up.) I’m still a tired, loopy mess. I am now home, steadily improving. Once again, Vicki literally saved my life.

I’m pleased to acknowledge the extreme kindness and assistance of Keith plus all of the participants of the workshop. Their acts of compassion were astonishing and far beyond any reasonable expectation. They chauffeured me, accommodated me, inspired me, and repeatedly touched my heart. And since the workshop they have reached out to continue to do so.

On the first day, Keith shared a personal experience that set the tone for the entire week. His wife was receiving hospice care, sleeping late in their bedroom. He was reading the newspaper in a chair near her. When she finally awakened she looked out their window, with a view of their yard and its 200-year-old oak tree and said, “What a beautiful world this is.” She closed her eyes and never reopened them.

With love, gratitude, beauty, and lots of needle holes,

Jim

p.s. I wish I could find the words to give more praise and appreciation to Vicki. I can say that a nurse even commented a few times that she was touched by how we spoke on the phone together.

p.p.s. it is way cool that no matter what I am or am not wearing, I always feel my wedding band, even when it’s off. Nothing else gives that sensation. I like!

 

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email sent July 3, 2016

Subject: No Wonder! Look What That Stuff Does to Teenage Boys’ Hair

… or, Measuring Up to Forrest

My breathing cratered big time soon after sending the last email. I was on oxygen almost constantly. And even though I was at a much lower altitude than Flagstaff while driving to my next treatment in Goodyear, I had to stop and improvise by lying on my stomach in order to elevate my blood oxygen saturation. The infusion was cancelled until my condition was diagnosed and treated.

The likely culprits were a low-grade infection treatable with antibiotics, pneumonitis (an inflammation of the air sacs of the lungs, a listed serious potential side effect of the immunotherapy drug) treatable with steroids (e.g., prednisone), or a response to the reintroduction of the immunotherapy drug. I received a high resolution CT scan to assess my lungs.

The scan results were inconclusive, but at least no pneumonitis was evident. Better still, even though this type of scan is not as definitive as contrast CT scans, the tumors were deemed to be unchanged. Once again, another tumor-related bullet was dodged. Admittedly, the specter of the pistol did exact quite a high psychic toll. The alternative options just aren’t that appealing.

A low-grade infection was the likely suspect, so I started taking antibiotics, but to no avail. My breathing grew significantly worse. I was winded after only a few steps in Flagstaff. So I texted Lisa, as she insisted I do if I didn’t improve. I waited until 9:30pm figuring she would get on it in the morning before flying out on vacation and then just pass on the info to Dr. Weiss and others. But noooo. That’s not who Lisa is. She texted Dr. Weiss and then called me at 10:30. They wanted me to start taking a high dosage of prednisone immediately in case pneumonitis was the cause. If I were to respond well to the steroid I would be able to resume dosing. Lisa took the initiative to do the legwork to allow me to pick up the script via a drive-through pharmacy just before the midnight closing. I very stoopidly did not awaken Vicki to assist me. I had relied on her too heavily for quite a few weeks. Make that years. The worse I feel, the grumpier, more ornery and more expectant I become. I figured I could readily manage getting to the store on time alone. Ha! Was I wrong! I made it, but definitely not readily. I was gravely short of breath, even walking down the stairs.

Earlier in the day, I made another reference to the bumpy road. Vicki nailed it again when she said we were no longer even on the road, we were four wheeling.

After insurance coverage, the drug cost $10. A pretty darn inexpensive lifesaver. The drug kicked in remarkably quickly. I progressed from my worst breathing episode ever to an amazing initial recovery. While I got horribly winded just 48 hours earlier, on oxygen, descending the stairs, I was able to ascend them with relative ease without oxygen. Yes, I’m one grateful person! I had a long way to go, but I was definitely on the mend. And then 24 hours after that I was better still. The death rattle coughing had all but vanished. Just bad coughing continued. After a week and a half on prednisone my breathing was close to back where it had been. A one-day visit to the healing house in Cottonwood did wonders as it always has, for some reason.

Speaking of healing, I must add that CTCA is much more than a treatment center. Thankfully, it’s a healing and recovery center, as well.

In hindsight, I attribute the triggering of the episode to my inadvertent inhalation of chlorine bleach fumes, 10 days before I sent the last email. (When will my bout with stupidity subside? I’m reminded of Forrest Gump saying, “Stupid Is As Stupid Does.” It annoys me that he seems to know what that means, yet I haven’t a clue.) I started prednisone three weeks after the inhalation. All throughout, my finger spent lots of time inside my handy, little oximeter, as I obsessively checked my oxygen saturation status.

Once I was out of the woods, I read more about pneumonitis in that most credible of sources, Wikipedia. Chlorine was listed as a source of this 15th leading cause of death in the US.

After close to two weeks on a double high dose prednisone my breathing had returned to “normal” except for diminished inhalation capacity. I was near completely recovered, but no cigar. Vicki, once again, passed on sagely advice. She urged me to stop feeling sick, to instead feel well, to stop waffling and go to Santa Fe for the photography workshop. The next morning I awoke feeling “normal.” Amazing! Amazing lady, eh?

All that I suffered from the drug was leather mouth, the inability to sleep, and so-so bad dreams. Applesauce proved itself to be an excellent substitute for saddle soap (thanks, Vic). The leather mouth demanded copious amounts of liquids, which produced predictable results. After 2 weeks of little to no REM slumber I requested and scored some sleeping meds. Problem solved. Despite the challenges, sleeplessness sure trumps never waking up.

So where does all that leave me? At 7,200 feet. Greetings from Santa Fe!

With love, gratitude and saying, “Wow!” way too often,

Jim

p.s. About the large intake of liquids… Let’s just say that our dog, Elsie, should be proud of the frequency and swath of markings her dad made as he drove across two states.