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!

 

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 15^th 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.

 

email sent June 7, 2016

Subject: Ch-ch-ch-ch-changes…

… or, A Total Repaving Would Be Even Better

A mini-update… Not being able to sit or even stand comfortably for almost 3 weeks wasn’t very pleasant. I finally gave the wound a break and stayed on my stomach for a couple of days. How did my healing body reward me? I woke up one morning with, as Vicki described it, a grapefruit-sized swelling underneath my suture line. My Memorial Day weekend plans were immediately trumped. And so began the now familiar four sequential stages of confronting a new issue: identification of the problem, diagnosis, treatment, and addressing outcomes and consequences. Each presents its own special drama. It turned out to be a relatively benign seroma, which is an accumulation of the straw-colored serous component of the blood. Test results indicated that no special treatment was required. My body has already begun reabsorbing the fluid.

I’ve learned to take these matters in stride. Stressing out doesn’t help at all. I enter mental robot mode, working to sublimate the consideration of worst possible outcomes. After the event passes I wonder why I’m so tired, but then I remember that denial can sure be exhausting. I characterized the mini-crisis to Vicki as just another bump in the road, to which she replied, “I’d like to get off the washboard road. Either that or I need a new suspension.” Ain’t she sumthin’?

The highlight of the following days was the suture removal. It was so nice to sit again without tilting in my seat just enough to alleviate the pain, but not so much that anyone would notice.

Well, I did it again, I signed up for an adventure when I wasn’t feeling so hot. My breathing has been compromised more than usual. The list of suspects includes the drug isn’t working, the drug is working, lots of smoke in the air and a lot of pollen, too. Or, a combination of as many as three of the four. I got tired of second-guessing and took the plunge. I signed up for a photography workshop next month in Santa Fe with Keith Carter, a world-renowned photographer and educator. This course was highly recommended to me quite a while ago by another topnotch photographer/teacher. Perhaps, just perhaps, it was because, as the course description states, “wiseasses, burnouts, and hotdogs are welcome.” I bought trip insurance just in case, and also as a way to ensure that I won’t need it.

Keith Carter suggested reading the poetry of Mary Oliver, so I did…

“Instructions for living a life.

Pay attention.

Be astonished.

Tell about it.”

Here’s a quotation that I’ve referred to quite a few times over the years. A great friend recently mentioned how useful it had been to her. “The best way to change someone is to look at them differently.” I don’t often check my archives, but I looked back on my list of quotes related to change and I guess I misquoted it…

“One way to change people is to see them differently.” Barry Stevens (I prefer my version. No surprise there, right?)

Some others on that topic, …

“People don’t resist change. They resist being changed.” Anon.

“If you want to truly understand something, try to change it.” Kurt Lewin

“Nothing endures but change.” Heraclitus

This is marginally related at best, but it’s one of my all-time favorites…

“It’s what you learn after you know it all that counts.” John Wooden

Before finishing, I must pay homage to “The Greatest.”

“Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.” Muhammad Ali

With love, gratitude, and astonished by seeing an asteroid with my eyes closed*,

Jim

* It’s true, I was in my healing room with my eyes closed last week around 4 AM when I saw this amazing flash of light. I got up to look at the southern sky and it was gone. It was so bright that it “blinded all-sky meteor cameras as far away as western New Mexico.”

http://indianexpress.com/article/technology/science/asteroid-sonic-boom-fireball-sky-arizona-nasa-video-2835534/

email sent May 17, 2016

Subject: Immediacy and Uncertainty…

… or, The Best Fire I Ever Saw, By Far, Was a Rust-Oleum Plant

Could it be? Yes! Another short email. I’m gathering fodder at a faster rate. This time I’ll blame it on some excellent responses to my last two mailings and lots of down time, literally, on my stomach. Let’s just say that sitting has been a royal pain.

I qualified for re-entry into the clinical trial! Dosing began today. And the surgeon got all of the skin cancer last week – the margins were clear. The new spot on my right lung is a bit disconcerting. It’s adjacent to one that was obliterated with radiation last year. Weird. We’ll know lots more with the next scan which is scheduled for mid-July. With luck, the dosing will knock it out. We’ll see. I’m not worrying, I’m breathing fine. Besides, worry is boring, I have lots better things to do and think about.

I’m overwhelmed by the replies I receive. Thank you so much! Here is a sampling…

“Observers of miracles is our mantra should we take the time to see.”

“Well, right now in my reality, I am closing my eyes, envisioning our beautiful world, and channeling that immense force to you in beauty, love, and healing… Also as we age, I find myself outside more… looking up the heavens saying ‘it’s in your hands God, it’s in your hands.’”

“I was curious about the previous reference to achievement and the meaning of life. I think they are inextricably linked… is it not the case that if someone is to give up on trying to achieve then their life while perhaps enjoyable is somehow much, much less rich?”

My fellow engineers are going to love this one: “As a mechanical engineer always fixing old things I think of it [cancer] a bit like rust… it’s everywhere… and indiscriminate as to the beauty of the object.”

Another great friend really got me thinking. She sent me a Mark Twain quotation that was new to me. As I often do, I searched the internet to see what I could learn about its context. What I did find was another quote that one person coupled with the Twain quote to guide his life. This second quote is:

“A life is not important except in the impact it has on other lives.” Jackie Robinson (1^st black American to play major league baseball) What a perfect message to pair with:

“The two most important days in your life are the day you are born and the day you find out why.” Mark Twain

I implore you to ponder why you were born and when you realized it. Please feel free to send along what your thoughts. I cheated and came up with two days, rationalizing that in some respects I’ve had two lives. The two were the day I started work as a biomedical engineer and the day I began sending these emails.

With love, gratitude, and a burning desire to vanquish rust,

Jim

p.s. Huge thanks go to Vicki who, once again put her life on hold and saw me through this latest round of immediacy and uncertainty.

 

 

email sent May 12, 2016

Subject: Delete If Cancer Bores You…

… or, Finally, a Brief Email and It’s Only About Cancer?!

Yesterday, a wonderful friend from forever ago asked, “What causes that first cell to change?” It’s a tough question and a great question. Obviously, I’m no expert, not at all. But, as I am wont to do, I have formed opinions. After 5 years I should have some thoughts, right? I answered her mostly by digging up passages from what I have read.

•  All of our bodies possess oncogenes that have the potential to induce a normal cell to become cancerous.

• A cancer cell must acquire six characteristics as it develops: “It must acquire the ability to stimulate its own growth and to ignore signals admonishing it to slow down. That is where the oncogenes and tumor suppressors come in. It must learn to circumvent the safeguard of programmed cell death and to defeat the internal encounters – the telomeres – that normally limit the number of times a cell is allowed to divide. It must learn to initiate angiogenesis – the sprouting of its own blood vessels – and finally to eat into surrounding tissue and to metastasize.” [per Douglas Hanahan & Robert Weinberg, The Hallmarks of Cancer, 2000, excerpted from George Johnson’s The Cancer Chronicles Unlocking Medicine’s Deepest Mystery]

Along with smoking and obesity, the greatest risk factors are old age and entropy. Environment, genetics, and diet play a role, but a very small role in comparison. Every day, our cells are wildly mutating as they divide. As we live longer, the mutant cells have a greater chance of meeting the six requirements and forming tumors. And once formed, they are very adept at adapting to challenges to their survival. Sheesh, even dinosaurs had cancer!

“The infectious diseases we have defeated were each caused by a single agent – an identifiable enemy that could be killed or vaccinated against. With cancer we would have to seize control of a whole slew of factors, including the mishmash of symptoms arising from imbalances in energy metabolism. And the biggest risks will always lie beyond our grip: old age and entropy. Cancer is not a disease. It is a phenomenon.”

The author also made the case for how different cancer is from other maladies. Unlike the diseases that have been conquered in the past, there won’t be a single vaccine or a single antibiotic to vanquish cancer. Cancers vary greatly; it’s highly unlikely there will ever be a single panacea.

[George Johnson, The Cancer Chronicles: Unlocking Medicine’s Deepest Mystery]

• ŸA Johns Hopkins news release from January 1, 2015 stated, “Scientists from the Johns Hopkins Kimmel Cancer Center have created a statistical model that measures the proportion of cancer incidence, across many tissue types, caused mainly by random mutations that occur when stem cells divide. By their measure, two-thirds of adult cancer incidence across tissues can be explained primarily by ‘bad luck,’ when these random mutations occur in genes that can drive cancer growth, while the remaining third are due to environmental factors and inherited genes.” And, of course, the random mutations accumulate as we age, which isn’t bad luck, but we are taking our chances.
• 1 in 2 American males develop cancer, 1 in 4 die from it (mostly lung/bronchus and prostate). 1 in 3 American women develop cancer, 1 in 5 die from it (mostly breast, lung/bronchus, and colon/rectal). [as of 10/1/14]

[http://www.cancer.org/cancer/cancerbasics/lifetime-probability-of-developing-or-dying-from-cancer]

My conclusions… Cancer is prevalent, far more so than you may think. There are three major risk factors. We can increase our risk by smoking and becoming obese. The third major factor is living longer. For this reason, we are almost predisposed to develop cancer. The mutations accumulate with time; the longer we live, the higher the risk. The randomness of mutations, combined with the ingenuity and resiliency of cancer cells, make this disease so exceptionally difficult to conquer.

With love and gratitude,

Jim

p.s. Bonus quotation for those of you who read this to the end:

“The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be.” Anne Frank

p.p.s. The alleged 2.5 inch suture line turned out to be 5 inches long. Owie!

email sent May 10, 2016

Subject: A Tasty Recipe…
… or, It’s Not What You Think

When I left you last, not so long ago, Vicki and I were faced with a treatment decision. One option entailed radiofrequency ablation (RFA), which involves inserting a probe or two into the center of the tumor then burning it from within. The small size of my tumor and its location near the surface of the lung made it an ideal candidate. Pneumothorax is the most common complication of RFA. I was told to expect both it and a collapsed lung. Those events come with the added excruciating pain of the later removal of a dreaded chest tube (think, yanking on a wound without pains meds). Been there twice. They were among my worst experiences… ever. I didn’t wish to risk an encore, thank you. We passed on this option. Another option consisted of the combination of an immunotherapy drug and a chemotherapy drug. The chemo drug is more benign than the two I had previously received, but still offered many similar potential side effects: hair loss, nausea, vomiting, diarrhea or constipation (huh?), etc. It also is administered with the steroid that robs me of sleep. No thanks. And Dr. Spierer ruled out radiation, I had already reached my glow limit. So, thankfully, the choice of treatment ultimately became an easy one, re-enter the infusion phase of my current study. It’s back to treatment every two weeks, for up to a year.

I hope to weather the current storm with this wonder drug (and its absence of side effects and untoward consequences) until the next, improved wonder drug is available.

And if the recurrence of lung cancer weren’t enough, I learned the following day that a growth on my thigh was squamous cell cancer. Oh great, more cancer stuff to investigate. Surgery had to be performed before I could resume immunotherapy treatment. During my consult, after viewing the growth, the surgeon called it a “pretty straightforward” procedure, a “slam dunk.” It’s always nice to hear such confidence, especially from the national director of surgical oncology. And he’s very tall – perhaps he really can dunk.

On the positive side, wow, I did make it to five years post-diagnosis, and therefore reached the 3% (or 1% depending on the data base) survival milestone. (Five years is the longest follow-up for which I have found survival data.)

Later that day, on the drive from Cottonwood to Flagstaff, I stopped in Sedona for lunch. I chose that stunning route through the luscious Oak Creek Canyon to become imbued with the scents of spring with windows down and moon roof open, to process the events of the previous 24 hours. In Sedona I saw the perfect bumper sticker, for me at that moment and for that of the land of harmonic convergence…
REALITY
IT’S NOT WHAT YOU THINK

The surgery went well today. A 2.5-inch battle scar. Not too bad. In 2-3 days, I’ll hear about the pathology results on the margins to ensure the doc got all of the malignant tissue. (At least I won’t need to wear a bag over my head to hide the stitches and incision, as I long ago recommended to a good friend after her skin cancer surgery. She often reminds me of that well-intended suggestion. I wonder why. Last week, she even went so far as to tell me that I should wear a bag!)

I received many wonderful responses to my last email. I’m always gratified to learn that they are being passed on, especially when at least portions are shared with children. I also enjoy that I can in a small way remind all of us to live in the present and appreciate all that surrounds and infuses us. One great friend wrote of our symbiotic relationships, that the email recipients and I give each other strength. Nice.

It’s time again for some quotes…
“Perfection is not attainable, but if we chase perfection we can catch excellence.” Vince Lombardi
“Hope is a waking dream.” Aristotle
“I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.” Dalai Lama
“Life is really simple, but we insist on making it complicated.” Confucius
“Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like.” Lao Tzu
“Faith is taking the first step even when you don’t see the whole staircase.“ Martin Luther King, Jr.

Hope, faith, excellence, simplicity and flow… they comprise pretty good ingredients for cooking up a fine life. But let’s not forget what Mr. Lennon told us, “All you need is love.” Without this icing, the cake is dry and not quite sweet enough.

With immense gratitude and lots of icing,

Jim

email sent April 25, 2016

Subject: Be Wary of Smiling Rats…

… or, Don’t Let on That God Is Talking to You

Because of the suspicious appearance and size of three spots on my lungs in the February scan, the otherwise three-month interval between scans was reduced to two months. (Thank you, Lisa!). The results from today are in. Well, dammit, a relatively new spot on my right lung grew enough to exceed the threshold of requiring attention. I do have a number of options. Radiofrequency ablation is one. Another is the very focused radiation treatment that was previously administered to me, but I doubt that I can qualify… I believe I’ve already surpassed my cumulative glow allotment. A third option is the combination of an immunotherapy drug plus chemotherapy (ick!). While we’ll look into all of these, at this juncture, the most appealing option is to return to the immunotherapy treatment that I received until last September. (Like before, I’d be treated every two weeks for up to a year). Pursuing any of the other options would preclude me from ever receiving this drug again. We’ll see. It may be an interesting next couple of weeks of Vicki and I processing information. I do know this, however, it’s sure been a very nice seven months without treatment!

I should add that consistent with CTCA efficiency and effectiveness, I already signed the new consent form and had the blood drawn and EKG performed to verify that I still qualify to resume the immunotherapy treatment.

As for my state of mind, hey, I’ve been remarkably fortunate so far, there’s no reason to expect otherwise now. With the team I have in my corner, starting with Vicki and Ned, then Drs. Weiss and Spierer plus Lisa, and including all of you, I have no concerns or fears. As long as I have treatment options and loving support, it’s just another bump in the road. It still is what it is.

So much for the clinical update. Oh wait, there’s more… I’m not gonna be famous after all. The guy who suggested it left the drug company. Oh well.

            I read Mitch Albom’s, Tuesdays with Morrie, since my last email. From various conversations, it seems that many, if not most, of you have also read it. For those who haven’t, it’s a non-fiction account of the author’s final visits with his most significant collegiate mentor, Morrie Schwartz, as Morrie is succumbing to the ravages of ALS. It’s a compelling, quick read. It contains a large number of thought-provoking insights such as, “… Once you learn how to die, you learn how to live.” Also, “As I see it, [the important questions] have to do with love, responsibility, spirituality, awareness.” The author confessed, “I buried myself in accomplishments, because with accomplishments, I believed I could control things, I could squeeze in every last piece of happiness before I got sick and died…” I found a simple parable shared by Morrie to be most enlightening…

“The story is about a little wave, bobbing along in the ocean, having a grand old time. He’s enjoying the wind and the fresh air – until he notices other waves in front of him, crashing against the shore.

“‘My God, this is terrible,’ the wave says. ‘Look what’s going to happen to me!’

“Then along comes another wave. It sees the first wave, looking grim, and it says to him, ‘Why do you look so sad?’

“The first wave says, ‘You don’t understand! We are all going to crash! All of us waves are going to be nothing! Isn’t it terrible?’

“The second wave says, ‘No, you don’t understand. You’re not a wave, you’re part of the ocean.’”

I’ve long believed in the duality of our connected oneness and our individuality. Sort of like the duality of light, which behaves as both particles and waves. I’d never really tried to resolve the seeming conflict, but awoke the morning after reading Morrie’s story wondering about it. I had no idea how to explain it. Without hesitation, I knew that my guardian angel could clarify this for me. The moment I saw her in my healing room she explained it by way of analogy. She pointed out that I am a single body, that I am one. And I’m also comprised of multitudes of cells… my individual cells are also me. All of my cells combine to create my oneness. How simple! The ramifications of this analogy are fascinating to consider.

A good friend alerted me to the following 2½ minute inspiring video from Jay Shetty whose message provided a perfect preparation for our upcoming road trip:

http://rise.huffingtonpost.com/watch/seeing-beauty-everywhere

Last week, Vicki and I returned from a 10-day trip to see Ned in Monterey. Just spending time enjoying Ned made for an outstanding journey. But, as a special bonus, what an amazing country we live in! We left mountains, crossed enormous deserts and arrived at an ocean. Wildflowers dotted the roadways. Ocotillo blooms commanded the most attention. We avoided interstate highways as much as possible, visiting quaint little towns along the way. Tiny Boron, CA, for example, boasts both a giant rabbit sculpture made out of a tissue paper-like material and a retired fighter jet. Tehachapi, CA, lies nestled in a valley, surrounded by rolling hills lined with countless wind turbines. We saw snow-capped peaks as we zoomed through scorching salt flats. We passed a giant solar panel farm and a place where carnival rides go to rest. We soaked in images of beaches that extended for miles, redwoods that met up with the shore, enormous boulders hammered by pounding surf with such relentlessness and force that it bored holes through the rock. Sea otters, harbor seals and sea lions paid us no heed. Equally fascinating and accommodating were the hosts, inhabitants and visitors from around the globe. In two days we journeyed from the glory of the Pacific coastline, to Death Valley and ultimately to Las Vegas where we watched The Beatles Love Cirque du Soleil show to honor our 32^nd wedding anniversary. There were too many highlights from which to choose a favorite. (I do have a special place in my heart for the roadside sign featuring a cute, smiling rat saying, “Come See Our Baby Rattlers.”)

I’ll wrap this up with some quotations…

“I have found that if you love life, life will love you back.” Arthur Rubenstein

“As you get older, you gather layers of life. You wear them proudly, or they take you down. I choose to wear mine.” Rita Coolidge

“Why is it that when we talk to God we’re said to be praying, but when God talks to us we’re schizophrenic?” Lily Tomlin

With continuing love, gratitude and prayers,

Jim

p.s. On the topic of beauty, we lost the company of yet another beautiful soul last week. If you think you’ve seen magical guitar playing, I implore you to check out Prince’s mastery of While My Guitar Gently Weeps, performed with an all-star band at the 2004 Rock and Roll Hall of Fame induction ceremony. His solo starts at 3:25. https://www.youtube.com/watch?v=6SFNW5F8K9Y

 

 

email sent March 18, 2016

Subject: We’re Enough…
… or, Asking for It

I went to Goodyear CTCA on March 8 for routine blood work and an exam from Dr. Weiss. He reviewed my February scans with me. Three spots may have increased in size, 2 on the left side and 1 on the radiated right side. They were all under 1 cm, so they posed no great immediate concern. Even if they are growing, the growth is far slower than when I presented two summers ago. Should they continue to grow, Dr. Weiss suggested that my first option would likely be to resume the immunotherapy treatment for up to a year. It is possible that my T-cells could benefit from an extra little boost. Should that not work, three new drugs have recently received FDA market approval. (At least one of which is anti-PD-1, a close cousin to the drug I had been taking.) Each one might suit me. Plus, more new drugs are nearing FDA market clearance. I’m still doing well and with so many options I’m not really concerned at this point. It still is what it is.

I also learned that my immunotherapy drug company sponsor, AstraZeneca, will be providing me a phone number to call them. (My identity is blinded to them; they just know my clinical situation.) They had told Dr. Weiss and Lisa that they wanted to make me “famous,” whatever that means. (I’m probably good with it as long as it’s not a posthumous honor.) I’m not interested in becoming famous, but I am very interested in spreading what I’ve learned. And it would be extremely nice to receive the assurance of uninterrupted follow up and/or treatment at Goodyear so that I could remain in “active treatment” and thus avoid Medicare issues. (Hey, come on, I’m not above shameless bargaining when my life is at stake.) And, now that I think about it, famous would be okay if it meant flying us to Bora Bora first class for a few weeks vacation. Dreams, ya gotta have dreams.

That’s it for the clinical update. Now, for a couple quotes I learned earlier this month…
“Substitute curiosity for knowledge.” Anon. (Shared by my dental hygienist as she was probing me.) In other words, instead of being sure about your opinion, ask and probe for more information. She also wondered aloud why goodness and love weren’t discussed more openly.
About the same time I found an article by Deepak Chopra in which he wrote, “Coincidences are not accidents but signals from the universe which can guide us toward our true destiny.” He went on to add, “The key is to pay attention and inquire.” All right, already. I get it.
Excerpted from http://www.beliefnet.com/Wellness/2003/10/Coincidences-Clues-From-The-Universe-By-Deepak-Chopra.aspx?p=4 (I recommend the entire four page article.)

And also this month a great friend suggested that I listen to two exceptional TED talks from Brené Brown: “The power of vulnerability” and “Listening to shame.”

The topics sound dry and deadly… they’re anything but. Dr. Brown is quite entertaining and convincing. Her research results astounded her, they completely contradicted her academic precepts and methods.
She had this to say about vulnerability: “… probably the most important, is to believe that we’re enough. Because when we work from a place, I believe, that says, ‘I’m enough’ … then we stop screaming and start listening, we’re kinder and gentler to the people around us, and we’re kinder and gentler to ourselves.”
Her take on connections especially resonated with me. “Shame is the fear of disconnection: Is there something about me that, if other people know it or see it, that I won’t be worthy of connection?” I was finishing writing the short story that I mentioned in my last email that happens to be entitled, Connections. After discussing the plot, my friend recommended the TED talks, which subsequently influenced the tale. It’s difficult to convey how so many events and discussions, i.e., connections, over the last few weeks both guided forward while at the same time manifested the plot. I’ve never been so consumed by anything I’ve ever written before. I was enchanted by how it revealed itself to me. I never knew what turn it would take next until I felt it was the right time to continue writing, which occurred with increasing frequency as it neared completion.
The story can be viewed or downloaded at
http://jamesdlewis.com/shortstories/connections.html.
It contains an addendum that describes how to create a healing room.

I’ll leave you with this thought… It’s not so much what you decide, but rather where your decision comes from. If it originated in your heart, it can’t be wrong.

With love, gratitude and wonder,
Jim

email sent February 25, 2016

Subject: Cosmic Interconnectedness…

… or, What, No Laws of Physics, Not Even Guidelines?

My last CT scan and dosing occurred three and five months ago, respectively. I was scanned two days ago on Tuesday. The good news is that the remnants of tumors in my left lung, the ones that necessitated the immunotherapy, were unchanged. The less good news is that a very small new bugger (not my word – thanks, Marnee) appeared on my right lung very near the one that was radiation zapped last April. Its circular shape makes it a suspicious candidate to be a new tumor, though it could be a consolidation of fragments of the old one. It’s too small to biopsy and not large enough to meet the size threshold for concern (1 cm). It’s close to that size, so we’ll scan again in two months.

I gotta rave about my treatment team at CTCA. Dr. Weiss had taken time off for a very special reason and therefore was unavailable to look at my scans, so Dr. Spierer, my radiation oncologist, took it upon herself to examine the scans Tuesday night. She pulled up previous scans and even called Dr. Weiss to discuss the results, then emailed me close to 9:30 pm when she got home from work. She gave me her personal number to call to discuss their thoughts. The next day, Dr. Weiss, still on his own time, discussed my case with my favorite nurse, Lisa, who in turn called to pass the information on to me. She was considerate enough to suggest a scan in just two months instead of the customary three. So, hey, can medical care be any better than that? I’m way beyond being blessed.

Here is an eclectic assortment of quotations…

“Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove we showed up for it.” Anon. (tweeted by Iman after her husband, David Bowie, passed)

“Close your eyes and imagine the very best version of you possible. That’s who you really are, let go of any part of you that doesn’t believe it.” C Assaad

“When you have gained a certain amount of experience, you find that a desire to help all people arises in you.” Mikhail Prokhorov

“What I experienced during that three-day trip home [after walking on the moon] was nothing short of an overwhelming sense of universal connectedness. It occurred to me that the molecules of my body and the molecules of the spacecraft itself were manufactured long ago in the furnace of one of the ancient stars that burned in the heavens about me.” Edgar Mitchell

On the topic of connectedness, many of you have expressed interest in my internal healing room. (Employing this technique is sort of the unambitious alternative to meditation. Meditation light, if you will.) Last Fall, I had a fascinating and extended conversation with my guardian angel/healing room helper in my healing room. She noted that everyone has spiritual skills, it’s just that not everyone knows how to access them. Sort of like having memories, but being unable to reach them. She suggested that I teach others about creating their own healing room, just as I had learned to do it. She added that I should maybe write a short story about it. Reading the story would enable anyone, healthy or not, to build such a room to help themselves and others.

By the end of the year I was writing the story in earnest. The scope has grown considerably. And as is the case with many writers, the story is writing itself. Plot development has arisen out of nowhere as I’ve typed, leading me into totally unfamiliar realms. In a major plot twist, the protagonist (Justin) additionally created what he called a connections room because interconnections play an enormous role in health and healing. Prayers, thoughts, recommendations, treatments, caregiving all fall within that general category. Figuring out how to create such a room has been a hoot. Just imagine what fun it is to be an engineer unconstrained by the laws of physics. It has a simple layout consisting of life strings, way posts and time markers. Plus, it features a very useful medicine cabinet. I’ve already given the room and the medicine cabinet a trial run. Upon connecting my life string to the cabinet, I was thoroughly overwhelmed by the appearance of a multitude of faces. I instantly recognized many of you. Many more people were present in the background, too. I’m eager to learn what happens next to Justin and me.

On a less ethereal plane, I probably won’t be sending another update email until the end of April when I’m due for another scan. In April, I will pass the 5-year mark since the initial diagnosis. That’s the longest follow-up that I’ve found actuarial data reported by the National Cancer Institute. At 5 years, the survival rate for my type and stage of cancer is 3%. I found other data to suggest that it’s 1%. Crazy odds. And I’m off treatment and feeling/doing great. If I believed that I’m deserving of miracles I’d characterize it that way. Instead, I call it almost miraculous.

What advice do I have for others going through this or something similar? I’ve shared a lot over the years. Perhaps most succinctly I’d recommend embracing, as soon as possible, the mantra “it is what it is” and facing the challenges head on, without delay. Your face might get bloated, it might become hollow, but at least you don’t have to see it that much. Unlike others. From the inside, you don’t look that bad at all. (With that in mind, I also recommend against photo documentation, especially selfies, as they distort enough as it is.) And if I had to condense my advice to a single word, that word would be immunotherapy.

So, what are my major takeaways from this journey (other than Vicki and Ned are wonderfully amazing and that I have an astounding support network)? I’ve concluded…

It’s a world full of talent, faith and goodness. It’s not so much a small world with a multitude of coincidences, as it is a connected world and a connected world is a healing world and a healing world is a world filled with gratitude and love.

With love and gratitude for the many connections,

Jim

p.s. Vicki shared these with me:

“Creativity is intelligence having fun.” Albert Einstein

“The meaning of life is to find your gift. The purpose of life is to give it away.” Pablo Picasso

p.p.s. Vicki also turned me on to this entertaining left brain-right brain test: http://www.arealme.com/left-right-brain/en/

p.p.p.s. And, yes, I recognize the seeming coincidence of completing the connections room just prior to the recent scan results warranting its use.

 

email sent January 4, 2016

Subject: Potpourri…

… or, You Can Find Your Life’s Porpoise in the Ocean

I have no health update to report except to say that all is well. My next CT scan isn’t until near the end of February. For the new year, I’m sharing some recent learnings and reaffirmations. They are all related, at least tangentially, if you wish to see them in that light.

A childhood friend said it well, ”Miracles abound when not denied.” A great winning attitude, as is striving to welcome grace into our lives.

“Gratitude opens a crack in consciousness that lets grace in.” Harry Palmer

“I do not at all understand the mystery of grace – only that it meets us where we are but does not leave us where it found us.” Annie Lamott

Manifestation naturally follows acceptance, and service naturally follows manifestation.

Dennis Saleebey taught that hope and possibility are the ingredients for change and recovery. Hope has a storied history and continues to drive us to achieve loftier goals. Hope, we are told, was all that remained inside when Pandora resealed the jar. I also learned that Aphrodite had shed grace upon Pandora’s head, along with “cruel longing and cares that weary the limbs” as described by a contemporary of Homer.

Cole Thompson, a photographer, wrote the following in his blog: “I’ve long understood the role of Vision in creating work that I love, but now I’m beginning to appreciate the role of Passion as being nearly as important. With Vision I can create unique images. With Passion comes an excitement that drives me. And while I might use each one individually to some success, I now realize that my best work is created at the intersection of Vision and Passion.” I appreciated this observation, it enabled me to identify the most compelling reasons behind my choice of favorite images. Even more impressive was that this message has applicability to all pursuits.

I recently happened upon what is now one of my all-time favorite TED talks, How to Know Your Life Purpose in 5 Minutes, by Adam Leipzig, a highly accomplished movie and theater producer. It sounded so gimmicky and brief that I had to listen. I admit I grew even more skeptical when I saw that it was ten and a half minutes long. At his 25^th college reunion Leipzig observed that only 20% of the attendees were happy, despite the high degree of financial success of all of these Yale graduates. He learned the following from speaking to the 20%. “I discovered that each of them knew something about their life purpose because they knew five things: who they were, what they did, who they did it for, what those people wanted or needed, and what they got out of it – how they changed as a result.” He led the audience in identifying those five things for themselves. Only the first two are about ourselves, the other three are outwardly directed. People relate to us for what we can uniquely share with them. What gives our lives purpose is how we change or transform others as a consequence of what we give them. Leipzig also noted that “happier people make it a point to make other people happy, and do things that make them feel well taken care of and secure. If you make other people happy, life teaches us, we will be taken care of, too.”

I highly recommend that you watch this video and share it with others. It’s universally relevant… we’re never too old to learn our purpose and our purpose can, and often does, change. The speaker is far more convincing than I and he finishes his talk with the best way to answer the everyday question, “So, what do you do?”

[https://www.youtube.com/watch?v=vVsXO9brK7M]

(If you’re willing, I’d love to hear of your life’s purpose. I won’t share it without your permission.)

“When I let go of what I am, I fully become what I might be.” Lao Tzu

With love, gratitude and purpose and wishes for a wonderful new year,

Jim

p.s. “The greatest pleasure in life is doing what people say you cannot do.” Walter Bagehot It is especially true if you are one of those people saying you cannot do it.