Out of the chemo room -- for good?

I'm out of the chemo room and unless I can beat my docs' first and only prediction of personal life expectancy for me, may never be going back.

More than a week ago (which now seems like an extraordinary length of time), and after another scan of my lungs showed the cancer still growing and new tumors forming from the previous month's pictures, the docs said the coughing and shortness of breath I was experiencing, and the increasing exhaustion that accompanied every step I took, or every exertion I made, would only grow worse.

Putting me on a  new round of chemo, with all their horrible side effects, would only add to the burden my body is fighting against, and so they recommended no treatment at all other than the medicines and practices that might lighten the load and make my life a little more comfortable.

"How much time do I have?" I asked, knowing full well that's not a question an oncologist likes to answer.

In five years of treatments, neither of the two oncologists who have treated me, Dr. Tom Kenney out of Porter Hospital, and Wells Messersmith, from the Anschutz Cancer Center, has ever offered a personal life expectancy. I think both of them are surprised to see me still walking around, no matter how slowly. "Look at you!" Messersmith said as I pressed him for an estimate for my survival.

Then he turned to his assistant and asked: "What do we tell people as a standard?

"Three to six months," said the young woman doctor.

"So that's it?" I asked, always wanting to confirm what I've heard from a source, which is an old reporter's trick.

"I don't know," Messersmith said, but probably.

Over the period of three scans, I realized, my plant-based diet seemed to be having no effect on the disease and its progress as well. So this time driving home from the appointment I knew I was going to go back to eating meat and fish, ice cream and using butter in what I cook. Funny thing is that first week after the diagnosis, I didn't seem to have any appetite at all. And kept losing weight by virtue of not eating much.

I have not been able to have a beer or a drink either, and that, too, seems to find it's way to the bottomline on the scale.Call it a benefit. I know the alcohol will make me feel bad so it turns off my desire for even a sip.

Yet, still, on Monday, I went back to Centennial to play croquet with my friends and share the news. That was actually a mistake. The sun and not much hydration combined with every heavy-footed step up and down the court and the increasing shortness of breath that accompanies such "work" wiped me out for three days after I got home that afternoon.

But 'Look at me!' I am still walking around and getting some things done, and I expect to beat my "standard" life expectancy by more than an additional three to six months after this first ticket expires. If some new drug is approved by the FDA in the meantime, who knows (God knows) I may still wrack up that miracle survival from this stuff.

And walk back into the chemo room for another round of living, albeit with side effects.

Also in the meantime, there is hospice and funeral planning to take care of. My writing here will probably turn more frequently to the small business coverage I have been posting, and since every day of life seems to cost at least about $75, if not $300 or $1,000, if you have any interest in sponsoring my journalism, I'm still alive and kicking, and barely living off my Social Security.

Give me a call. I will try to accommodate almost any request.

In the Chemo Room: 4 years and still crawling, LOL

I’ve been dying of Stage IV, metastasized colorectal cancer for more than four years now.

That thought occurs to me standing in the sun outside my house in the backyard where a bunch of croquet buddies gather once a week to play a game turned on its competitive head by a former Denver Bronco, Max Leetzow, who likes to sit on a plywood-cushioned bar stool and sing “Grown men playing croquet” as he waits his turn to beat us again, playing with only one hand.

The song, one Max made up, is meant to disarm his fellow players, making light of the play and any serious pursuit of victory. Every word said on the croquet course is meant to distract or dissuade a fellow player from playing to his own advantage. That’s how Max has changed the rules of the game for this bunch over the past twenty years, and everyone plays along.

It’s very competitive; Max Leetzow, is the most competitive human being I have ever met.

We began playing in my backyard before I was diagnosed. So my croquet buddies, in an odd way, have served as one of my first support groups, although many others have joined the fight with me through the years: my three sisters, my two daughters, a retired Chicago cop, two women friends, a formal, on-line support group called Colontown, my doctors and the nurses at Porter Hospital, and now a new cadre of doctors and nurses at University of Colorado Hospital Anschutz Cancer Center in Aurora.

On July 8, I joined a clinical trial for a drug known only by its non-name: MEHD7945A, made by Genentech, a big-pharma company out of San Francisco that wants to find out whether the drug helps, hurts or kills me.

So far, it seems to have helped a bit, but that’s not really the point of the clinical trial I’m enrolled in. It wants to know how bad it hurts at the dose I’m receiving now every two weeks.

The hurt, so far, has been surprisingly, if not pleasantly, mild. And the bit of improvement that I have felt from the symptoms of my cancer suggest I might survive through this fifth year and maybe even long enough to finish my novel.

I’m smiling as I write that.

I think it’s funny; or at least, as my daughters would say, it’s been fun. I have always taught them it’s a dangerous world outside your door, but if you’re careful and not afraid, you should always make sure you’re having fun. After four years of fighting cancer, I still believe that, and they keep asking me if I'm having fun!

Yes, my "fun" principle has been challenged, but as I write my the novel, and deal with the side effects of this new study drug, I cannot deny I’m still having fun. Croquet and Wild Turkey, of course, play their roles in that, too.

But to the clinical trial: I told my study doctor, Wells Messersmith, last week, as we looked over my preliminary scans since starting on the experimental drug, that within thirty minutes of my first infusion, I felt relief from a breathy kind of cough and shallow shortness of breath that my Porter oncologist, Tom Kenney, said would signal the continued growth of tumors in my lungs.

Kenney said eventually, within two years or maybe less, I would probably need to wheel one of those little green oxygen tanks around behind me, and that, generally I would “dwindle” to my death.

I told my sister-in-law as I started the clinical-trial appointments in July that I had no intention of “dwindling” to anything.  Was I being gruff and bombastic? Yes, perhaps an old lion’s roar, as I used to call the barking of old men against the fading worlds of their own times.

But I also am determined. More and more people are surviving cancer for longer and longer periods of their lives. I expect to get something accomplished during the last years of mine.

In fact, I’ve been monetizing this blog, and starting a separate business, www.PioneerHQ.com, with two partners since the New Year, and I fully intend to request my sponsors here to renew when the  calendar turns a full year on their support. But back to the clinical trial.

As I made my report of feeling better and looked at my initial scans, Messersmith smiled, a little too indulgently, and said, “We like patients to tell us when things improve for them,” he said. “We include it in our reports when we discuss efficacy.” You could almost hear “dwindle” repeated in his tone.

But efficacy is not the point of Messersmith's study. My scans backed me up; there was some initial, minimal shrinkage of the tumors lit up in the scans by radiation and a contrast they make you drink that always causes a dose of diarrhea.

The study is more concerned with side effects, and Genentech’s drug is no “spindly-armed,” weak hitter, as Max would call a poor shooter on the croquet court, despite the “mild or moderate” side effects described in the consent documents you sign to join the clinical trial.

After that first treatment, when I could breathe easier, I came home to a long night of fever, chills, crawl-into-bed chemo misery, and after a poor night’s sleep a bit of chemo-exhaustion and even a belated, three-day-later bout of chemo-diarrhea, which is when I’m told all the dead cancer cells get carried out of your body.

Later the next week, my fingers and hands started showing some tiny “splits,” a nasty side effect of Erbitux which has been one of my other chemical little buddies along the way.

The MEHD7945A splits, separations of the skin like thick paper cuts, were hardly as big, wide and painful as the Erbitux splits, so the drug lived up to it pre-consent reviews on that front, although those reviews did not mention splits at all. But again, the drug is being given to me to find out how my body reacts to it.

Also the nasal drip that came with all the other chemical cancer killers pumped into my blood stream over the four years returned within about a week of receiving MEHD7945 as well.

Overall, though, like I said, it's been fun. After a few days post-treatment, you actually do laugh about these minor discomforts, especially if your hope is still alive that the drug with no name might actually cure you.

And I have found that hope, if not LOL funny, still happens to be a lot of fun.