Not what Steve expected to hear on the way to the airport that Tuesday, after having gone to the doc the day before with concerns about a tight chest and difficulty breathing walking uphill on our vacation the previous two weeks. He went downhill fast. By Wednesday, in St. Louis, he was having trouble walking on the flat, got home Thursday in distress. The CT scan Friday morning revealed an enormous amount of fluid around his heart and in his lungs (whence the difficulty breathing), a large, lemon-sized, tentacled tumor and several enlarged lymph nodes. Admitted to the hospital that afternoon, he was having difficulty walking to the restroom by Saturday and by Sunday he could not even urinate without breathing spasms. They were waiting for their most senior surgeon to get back in town for a Monday surgery, but were prepared to do a less invasive procedure if Steve got too critical. They waited too long, because he almost didn’t make it.

He had a very difficult surgery on Monday, with 2 liters of fluid drained off his heart and lungs. The lung just kept draining so he had a 2nd surgery 8 days later for more draining and a painful procedure (pleurodesis) to “seal” the lungs. All this caused by an inoperable, metastasized, rapidly-growing tumor in his right lung and six lymph nodes. While we were stunned at the docs saying he nearly died in surgery (and potentially any moment before the 2nd one) and the diagnosis of Stage 4 cancer, we simply didn’t believe it’s terminal, in spite of what the oncologists said. Steve started a number of daily alternative treatments for the 3 weeks in the hospital: diet (veggies/fruit, enzymes, NO sugar), attitude (I will live, visualization with healing sounds, laughter, etc.), energy work (acupuncture, acupressure, cranial sacral, visceral manipulation, healing touch, reflexology). And there were hundreds of people and churches praying for him. The response from Boeing colleagues was astounding: on Monday a chain of emails went across the company and, because the folks who sent out the first ones were inundated with calls, a pattern was established quite spontaneously: I’d call a morning status report into Gail or Dwight and they’d send out emails, which kept cascading out. The incredible outpouring of support provided us with both a cushion and a springboard we never dreamed existed. The energy from those thoughts and prayers were so palpable in his room that nurses commented in a sort of awe.

Results: the tumor went down on all that alone—analysis of CT scans reveals a whopping 56% tumor reduction in the 4 weeks after diagnosis and BEFORE chemo (24% the 1st week, 32% in the next 3). Impressive, eh? My theory is all the prayers, energy work and diet gave Steve the energy to focus (the volume and intensity of prayers providing the big ‘kick’ that 1st week), and his attitude-visualizations-laughter turned on his inner ‘healer’…and the tide.

Once out of the hospital he started working with an integrated medicine clinic whose philosophy matches ours: cancer can be managed if not cured and it’s a wake-up call to change the conditions that gave rise to the cancer. They use low-dose chemo that doesn’t destroy the immune system or cause nasty side effects, plus a naturopathic doc guiding us with supplements to increase the effectiveness of the chemo and boost the immune system, plus an acupuncturist specializing in oncology. It was like the waters’ parting. Both the MD oncologist (who pioneered the low-dose chemo) and the world-renowned naturopath (who’s booked out a month but got a rare cancellation), saw Steve that week and got him started on their combo regimen: the ND approved almost everything I’d done and added a few things I didn’t know about. The only place in the area that does a PET/CT fusion scan got a cancellation (though they’d said 3 hours earlier that they rarely get one) and the technician came in early so Steve could get the test at 6 in the morning and still make his 1st chemo by 9. Supposed to be wouldn’t you say?

Status-to-date: Steve went back to work 4 weeks after getting out of the hospital (not as many hours of course) and golfing (with a cart now), no gym but light dumb bells and rebounding at home. He looked and felt completely healthy. But two weeks later he started having difficulty breathing going upstairs again so we had another CT scan (after 8 weeks of the low-dose chemo) which revealed that both the primary tumor and the lymph nodes were down 90% (with the 56% reduction before chemo recall). However 2 weeks later an angio-CT scan showed nodularity or probable tumor implants as well as still-enlarged lymph nodes in the pericardium, unclear on earlier scans. Seems that metastasized cells can mutate and be unresponsive to a treatment that works for the primary tumor. So while we had hoped to be completely finished with chemo after 12 treatments, the doc switched types of chemo for another 12. Another test confirmed a significant reduction in breathing capacity, the cause uncertain but probably contributed to by a drop in hematocrits in the oxygen-transporting red blood cells, and most worrisome, possible clotting in the lung, spun off from a small blood clot discovered in his left leg by yet another test (seems cancer can maintain its nutrient supply by creating clots as well as its own ‘runner’ blood vessels). So now he’s onto meds for those two complications plus the new chemo treatments. Along with, of course, an ongoing lifestyle modification to keep him cancer-free—and happier. Just a few more hurdles. Our spirits are high, we’re still laughing and confident he’ll be totally well with a healthier lifestyle and set of priorities. Life is good.
The rest of this story is my attempt to bring to life how he got to each aspect of ‘Attitude’—see the Cancer Self Care list for other key methods we use. While Steve prefers to keep his personal life private, he’s agreed to this sharing if it will help others going through cancer themselves or supporting those who are.

Getting to “I WILL live”

I woke up around 2:00 the Sunday morning before surgery, and for the first (and only) time I was palpably afraid that he might die from this: before bed his pallor had been gray and he was barely speaking. Although I knew he has strong will to live, I used applied kinesiology to test him for “I want to (can, will live)” while he was sleeping. He tested weak so I did ThoughtField until he tested strong (this is a protocol from Energy Psychology, see Cancer Self Care list if unfamiliar with it). The next morning I called family, friends, and a few colleagues, told them what was happening, then handed the phone to Steve for a few words. In a completely calm, matter-of-fact tone, he’d say “we’re going to beat this”. I knew then he would live, no matter what the docs said or implied.

They drained 2 liters of fluid off his heart and lungs in a very difficult surgery the next day (Monday) which took twice as long as expected. The head surgeon’s first words were, “Your husband is one very tough guy. Anyone less strong would not have survived,” adding that this was caused by an inoperable, probably-metastasized tumor in his right lung and several lymph nodes, results from the biopsy expected on Wednesday. I was serene.

On Wednesday results still weren’t ready. Though wanting to know, I just said to Steve “it doesn’t matter what the report says. We’re going to treat this cancer the same whether it’s a simple tumor or a metastasized one and you’re going to recover completely. I believe that 100%. Do you?” After a long, thoughtful look he replied, “I’m almost there”. I realized then that I had taken my conviction from him on Sunday, now he was cueing off me. And when we finally realized the complications of the cancer were more life-threatening that the tumor itself, we’d just shrug and say together “Oh well, just a steeper hill to climb, just a few more hurdles.” Ah, the power of Folie à Deux!

Getting to Laughter

My brother called the day after this first surgery. His partner, Mary, had survived a vicious cancer. His message was that, although she needed all the support, she found the sheer volume of calls and cards overwhelming because the underlying message in all that attention is “something is REALLY, REALLY wrong” and that message leads to panic. He added “Steve’s a low-key, no-fuss kind of guy and your job, dear sis, is to manage all the support, which he needs, in a way that 1) gives him time and space to rest and 2) eliminates the sense of panic.” He pounded it in. Great advice, I thought, but how in the hey do I do that?

Thursday, 3 days after surgery the hospital oncologists dropped the bomb using the words “Stage 4 adenocarcinoma and incurable”—merely nodding when I corrected “you mean allopathic medicine doesn’t have any cure”—and went on with their recommendation: aggressive chemo and radiation simultaneously with a 50% chance of living 2 years, 30% chance of making 3 years. “Nope, I want to buy several decades” Steve replied. Even though prepared for this, we were both shook into misty eyes.

We just held each other when they left. After a while I said “You don’t have to decide right now, but all these folks praying for you need and want to know. So you can write something, or I can, or Gail or Dwight can and you edit it. Just ponder what you want to say.” He just held out his hand for paper and pen and wrote that beautiful note that started with “I wish I could meet each one of you individually, look you in the eye and tell me how much your love and prayers and mean to me…”. I read it over and commented, “well it’s beautiful, but there is no humor and you’re known for that.” In the closest thing to a glower ever graced on me, he took the note back and dashed off a not-very-funny P.S. I just thought to myself ”Oooooo-k. He’s just been given a death sentence, so we’ll let this one ride”, and went out to the hall (I did most of my phoning away from Steve because I didn’t want him hearing the stories over and over like Chinese water torture) to dictate the note to Dwight, telling him we were going to fix this P.S. We gave it our best shot, I went back in with Steve to get his OK. Rolled eyes, who cares?, grumpy gills. Then Dwight said “Marel, what we need is one of those $5 words he uses that make me go scrambling for a dictionary.” “Oh you mean when he’s being ER-U-DITE?” I replied. Steve started grinning, then came out with “P.S. I’ll get my sense of humor back, but in the meantime, you all can ponder the absurdity of a health nut like me with a diagnosis like this. Ah well, life is just a study in irony.” I hooted, “that’s a take!” We added “keep the love and prayers coming, but send us humor and you better make us laugh.”

I hung up, we looked at each other, burst out laughing and have been laughing ever since. The email went out around 4:30 and by the time I got home at 11:00 that night there were 40 emails with jokes, and 20 to 40 a day for the next 3 weeks, in addition to mailed cards, books, videos. And so we stumbled into how to solve my brother’s admonition to manage all the support: with joy.

Getting to ONLY Positive Support

Before the first surgery I had taken aside every doctor involved in Steve’s care and told them that no matter what they thought his prognosis might be that I didn’t want ANY negative predictions spoken in his presence. We wanted straight, blunt accurate descriptions of what was going on, but no projection: diagnosis, not prognosis. I’d obviously forgotten to tell that to the oncologists.

We told the hospital oncologists immediately that Steve would be seeking alternatives to their lethal program that destroys the immune system and general health for years, what he calls “slash and burn”. The resident oncologist, came around almost every day anyway. While we really liked her, I finally didn’t want Steve to hear their gloomy message no matter how disguised and asked his permission to tell her we would be going elsewhere for sure. So the next time she came (following the second surgery when Steve was extremely weak), she announced that they had made an appointment for us to come in and thoroughly check them out once Steve was out of the hospital and able to deal with the cancer itself. This was my response, and yes, my jaw was firmly set:

“It’s my job to gather information about all kinds of options. Steve makes the decision about which of those options he wants. But I’ve decided that no one is going to treat my husband unless they believe he will live. As a psychologist I know about the power of self-fulfilling prophecies: there are hundreds of studies in medicine, education, sports, industry, and family dynamics documenting unequivocally that, for good or ill, people tend to behave in terms of other peoples’ expectations. Frankly I think it’s unconscionable that any physician would ever tell any patient they aren’t going to live, because whether one lives or dies is between them and their god, however they define that god.”

She looked quite taken aback and asked “does that mean you don’t want to take the appointment?” Uh, that would be, no.

Getting to Beyond Visualization

I’d told Steve years ago about the medical/Psychoneuroimmunology studies: that 95% of stage 4 cancer patients live if they can vividly visualize their cancers dying (by pac-man eating it up, guns blasting, clouds floating away, faucets draining, whatever). But those who cannot visualize at all, 100% die. So since we just assumed the tumor was cancerous, he started visualizations even before the 1st surgery. And he got quite structured after: twice a day for 20 to 30 minutes while listening to brainwave/nature sounds (and eventually a custom-designed CD with his unique musical note). He turned out to be quite creative: little dwarfs in a mine hauling the cancer cells out, sucking a lemon drop (since his was the size of a lemon), etc.

After he’d been home and finally feeling better (about 6 weeks after the first surgery) he got to talking pretty macho: gonna beat this thing, one-two punch this evil dude right outta this hemisphere (he does a great Red Foxx imitation), gonna kill, kill, kill. “Hmmm,” I observed, “my experience with energy of any kind is that, like people, if you hate it, it gets meaner and more deadly. Since we know that cancer is a message that you need to change the conditions that created it, perhaps it’s better to honor it for its effort to help you and to send it on to it’s own dimension with love and light.” So girlie.

A week later he asked “Have I told you I’m talking with my cancer as a part of my visualization meditations? Well, now I’m saying variations of this:”

“I know that you came to bring me lessons and I’m open to those learning those. These are the ones I’ve learned so far and the changes I’m making right now (and he goes though job attitude, life priorities, dietary modifications, optimal weight, etc.). I know you’ll always be a part of me—say, energetic and memory—and I’m keeping myself open to more lessons. But you’ve done your job, I don’t need you anymore, so you can just go to another dimension and help someone else.”

Wry. Then we discovered that while the primary lung tumor had gone down significantly but the metastasized ones in the pericardium around the heart had not. I find that telling. So now in addition to visualizing tumor and lymph reduction everywhere, he includes healing the wounded organs, especially the heart. And when we discovered that blood clots were developing, he adds smooth-flowing streams, etc. It’s a work-in-progress.

Getting to Forgiveness

This one was easy. Steve’s a naturally forgiving kind of guy, not given to grudges. So when this just started, on the way to the airport to the-newly-reorganized-who-knows-what’s-happening-all-staff meeting in St. Louis, when all we knew was that there was a spot on the lung, I said “Well Babe, we know that every disease has it’s own emotional stuckness, and lack of forgiveness is the one for cancer. So better start scrounging around and start forgiving anyone you haven’t yet. Do ThoughtField if you can’t do it from your heart alone.” That got taken care of on the way. It’s an ongoing process.

Getting to Internal Stress Reduction to Outside Forces

This one is hard and probably life long and definitely idiosyncratic to one’s own ‘hot buttons’. And essential, because cancer is a wake-up call that some things need changing, if only one’s own response to the slings and arrows and insults of life—they surely don’t stop just because one has cancer—or any illness. Steve had to deal with this especially after returning to work and he’s making decisions based on what he needs to do to nourish his sense of identity and honor even if it means paying a price in stress levels. He uses all of those techniques listed in Cancer Self Care and, knowing my man, invents his own unique twists: Know your own needs. Reassess priorities. Use the Serenity Prayer. Get happy or get out or accept it with grace and humor—the ultimate attitude adjustment. Forgive. See absurdity. Be irreverent. Laugh.

Getting Support, Period.

One person wrote, “Well, you managed to stun everyone—maybe not quite in the manner you'd prefer to be stunning—but you managed to do it, none-the-less. Knocked the breath right out of us, left us speechless. (This gang speechless?? You should have seen it!)” Well, speechless is what Steve was rendered by the tributes as well as the sheer volume of emails-cards-calls-visits-gifts. Wrote another, “It was very disheartening to learn that one of my all-time favorite people at Boeing has been very ill. But if there is any good thing about it…you'll now have to listen to some things I know you'd be too modest to hear under ordinary circumstances.” Well, he did listen, he is humbled, and he treasures every message of support and respect. And with boundless gratitude, we both thank you for the cushion and the springboard.

So I guess all one has to do to find out how one is valued is to scare the b’jeebers out of the folks who care.