ONLY THREE MONTHS

Twelve weeks, IV infusions once every three weeks. That really doesn't seem like a lot of time, nor does it seem like very aggressive therapy. Only four visits to the oncologist's office with a lot of down time in between. Until a few days ago, no imaging studies since December when my lungs were full of tumor and tumors were visualized in my neck and in my leg.

Three months doesn't seem like a lot of time -- in retrospect. During that interval, however, there were some pretty long weeks filled with pain, anxiety, fear, apprehension, exhaustion and lots of hope.

My signs and symptoms from the tumors had abated considerably the last few weeks, but the telling would be in the results of the week 12 CT scan, done a few days ago. In the world of the cancer patient it's termed "scanxiety" -- one's emotional state anticipating the scan and awaiting the results. I was fully prepared to wait until my next doctor's appointment early next week, and was a little surprised to see his phone number on the screen when there was a call the day after the scan. It turned out that he was the one who couldn't wait until next week to tell me the results.

"They can't find any cancer."

Now, of course, this is exactly what I was hoping for, but it had a strangely disquieting effect on me. I should have been jumping for joy, crying with relief, yelling from the rooftops and preparing to go out celebrating. But something just wasn't right. My whole professional life I had been taught, I had seen and had believed the paradigm that Stage 4 melanoma was not a reversible phenomenon. Yet I had just been told that the tumors from what was once an almost invariably fatal condition had disappeared. Yes, it makes sense when one looks at the advances in immunotherapy and knows something about the mechanism of action of these drugs, but it is hard to make sense of it emotionally.

As I was out hiking today, I was ruminating on this. I should be able to accept changing values such as these. In general, I'm in the "early adopter" group for technologic advances, I'm accepting of new and different ideas in art, music, etc. But as I walked, I did recall another situation in my life, a long time ago, when I was thrown off balance as my beliefs were debunked, and I suspect I was not the only one who had this same experience.

Procreation. The Birds and the Bees. We were probably all told some type of fable about where babies came from. And most of us probably believed it, unquestioning. Then the day came when we learned the truth. I may not remember the exact day, but I do remember the exact reaction. I was just old enough, and just educated enough to understand the biological principles, so that was no big deal. But then the realization hit. "NO…WAIT! That can't be right! Not MY Mom! not MY Dad!"

I finally got used to that idea (although I'm not sure MY children have), and we adapt. I've written before about needing to adapt to the "new normal" once cancer is diagnosed. I guess I hadn't realized that the new normal can include such good things as "They can't find any cancer."

The results of this scan are not the last words in the story of my melanoma. I still have much therapy to undergo. I will have more evaluation down the line to assess for any residual cancer. There are still risks of recurrence. But I'm starting to adapt to the concept that all of the tumors are gone. And the best thing I can think of to do in celebration? Just keep breathing, as long as I can.

A HOLE IN MY SOCK

So I noticed a hole in my sock this morning. Now, to most people, that's not much of a life event, but to me -- well, it's pretty damn significant. Allow me to explain:

Slightly over a year ago I learned the results of a biopsy from a mass in my parotid (salivary) gland. We were visiting in Portland for a few days when this occurred and the news was a pretty shocking blow, as one may understand. It's bad enough to have any melanoma in your body, but we didn't know if this discovery represented a single, isolated tumor or if it was just the tip of the iceberg with more tumor already present elsewhere, typical for melanoma. Prognosis and possible treatment depended on the results, then, of a pending whole-body CT scan and PET scan to assess for metastatic disease.

Emotionally at this time, I was wallowing. In the course of a few days I had gone from getting back onto our boat and continuing our dream cruise to the Bahamas to absolute uncertainty for my future. This uncertainty was so profound I found it difficult to concentrate and almost impossible to focus my thoughts toward any rational resolution of the situation.

Since I had to stay in Portland for the imaging studies, I took Elaine to the airport so she could get back to the boat in Florida, get some important papers and set the boat up for a longer absence than we had initially planned. We were only going to be gone four days when we left Florida, so I packed pretty lightly. It had been so warm I had been wearing sandals most of the time, but at the last minute I threw in one pair of socks since it was winter and we were heading to the Pacific Northwet. After dropping Elaine off, I headed to a shopping mall to buy another pair of socks as I had been wearing my one pair since we had arrived. It was then that I became aware that I was in even worse emotional shape than I first thought. It had been bad enough to get the news of the cancer, but now I was without Elaine, who was more of a support than I had realized.

I walked into a store, looking to buy one pair of athletic socks, but felt like a little kid walking into a shop of horrors. I was surrounded by sporting goods and athletic equipment -- things that I would normally be interested in -- but they just reminded me that I might not live long enough to ever use anything like that again. And the socks! They only came in packages of 12! Why the hell should I buy 12 pair of socks when I might be full of cancer and not live long enough to even wear out the one pair I currently owned? Totally defeated, I left the sore empty-handed.

Fast-forward a few days. Elaine had returned, I had my CT/PET scan and we were awaiting the results. We were distracting ourselves by going to movies. After parking the rental car, and as we were walking toward the theater, my phone rang -- it was the surgeon with the results of the scans. The scans had shown no other evidence of disease. At least now we would be able to develop a strategy to attack this tumor, a strategy that would be consistent with living longer.

My first words to Elaine after getting the results?  "Now I can go buy those socks!"

I did go buy the socks -- all 12 pair -- and, although the treatment strategy has taken a few twists and turns, I'm still kickin'. And my feet are covered with the socks that are now starting to wear out!

STATISTICALLY SPEAKING...

Quantitative results of in-depth analysis should be a good thing, one would think.

As a practicing physician I made many, many decisions in the care of patients, and a surprising number of those decisions did not have rigorous scientific studies backing them up. They may have been based on personal experience, accumulated opinions of experts or even some clinical data that suggested a certain procedure, or a specific drug, would provide the anticipated clinical outcome. That's the way a lot of medical decisions are made, although more and more effort is going into measuring and consolidating the clinical evidence in validated research settings to allow true evidence-based decisions.

As a scientist, well, valid analysis of experimental findings is everything. I recall as a graduate student way too many nights in the library poring over recently published scientific papers and dissecting the methods, the results, the analysis and the conclusions of the authors. It was a star in your cap at Journal Club if you found errors in either the selection or the execution of the statistical analysis. Their statistics approach could mean the difference between good research with a valid conclusion or a "filler" paper meant to pad the author's Curriculum Vitae.

In both the clinical and scientific research arenas one is striving for decision-making support and hoping that the authors of the studies were true adherents of scientific methods and principles. However… it's not always that way when statistics are involved. Although true attribution is vague, Mark Twain popularized the phrase "There are three types of falsehoods; lies, damed lies and statistics."

There were many instances in those research papers in which the authors were using their data to tell their story and therefore presented the numbers in a manner that supported their position. Similar numerical obfuscation abounds in both marketing and politics. Numbers presented supporting a particular point of view are to be suspect in proportionality to the vested interests of the presenters.

This brings me to my point - cancer patients should not read statistical analyses of outcome data for their cancer. This is an incredibly difficult thing to avoid. When one is first diagnosed with cancer it is natural to research every possible presentation on the subject. Many options abound - from true scientific literature to hucksters on the internet - and all are backed by numbers. Five-year survival rates, regression percentages, response fractions, dose-response curves, etc. etc.  If you are a cancer patient, ignore them! They are not the truth you are looking for! They do not mean that if you do this, the results will, inevitably, be that. The scientific data are meant to nudge progress over time and support clinical decisions of the treatment providers. The marketing data of the hucksters are meant to separate you from your money. No one can tell you the odds of your responding to medication, or even of your own survival with accuracy any more than they can predict the March Madness outcomes.

This sentiment comes after reading a recent paper on the outcomes of the investigational drug I am (likely) being given. The paper hailed the fantastic outcomes of previous clinical studies with this drug and touted it as THE new therapeutic option for those with advanced melanoma. This all sounds good - until you get down to the final numbers. The statistical improvement in survival was about 20 months. Twenty month survival was not the conclusion I was looking for, but that's what I came away with. Now I could parse their conclusions and re-run all the numbers, but I suspect they did a good job and my quantitative analysis would come out the same as theirs. However, the study had a number of variables -- response rates, dosage differences, prior treatments, etc. that contributed to an aggregate 20 month enhancement of survival. I know, intellectually, that this doesn't mean that I only have 20 months to live but, emotionally, it is difficult to ignore that bottom line number.

But I can ignore it, and ignore their statistical analysis, and say that in my experience with this drug, I am 100% alive!

WHAT GOES AROUND...

I had my fourth infusion this week. Prior to getting the meds I always have a visit with the oncologist involved in this clinical trial to review how everything has been going. All my labs are checked, we review any side effects, he does a physical exam and we talk about what's up next. It was during this last part that my oncologist said, in a nonchalant manner, "We're going to save your life, and get this drug approved."

Now, I know that these drugs are extending my life and I'm pretty excited about that. In my conversations with the oncologist I don't hold back about how pleased I am that I'm responding to these drugs. It just kind of took me by surprise that to him, saving my life seemed so matter-of-fact.

It got me to thinking about my clinical career. I spent about 25 years practicing medicine and, as an anesthesiologist, saved many lives. Although I don't think I was nonchalant about it, it also didn't seem to be terribly extraordinary. I did what I was trained to do, I did what I had anticipated doing when I initially went into medicine. Although it had an incredibly profound effect on the patient, to me, it was just part of what I did as a physician. Not to say that it wasn't rewarding to see positive clinical outcomes in challenging situations, but I didn't usually think of it as a cause for celebration -- but in retrospect, I suspect the patients and their families did.

The concept of karma as a principle of causality is a central motif of most Asian religions. In these religions, good intent and good deeds in the present tend to affect what will happen to you in the future part of your life as well as in future lives. These religions teach that like deeds lead to like effects - kind of like a codified Golden Rule, or "you reap what you sow," although it goes beyond just behavior to include attitude, desires and intent that direct any behaviors. In this way, these religions encourage one to lead an ethical existence and to seek to live a moral life.

I can't say I've lead a perfect existence, but a driving factor for what I have done throughout my life has been putting myself in a position to help others. This value culminated in my going into clinical medicine as a career. Although there are semantic subtleties between a job and a profession, my "job" as a physician was to help others. Perhaps, since medicine is a profession, it would be more correct to say that I saw my role in society as one who helps people maintain, or improve, their health. Since staying alive improves health, I helped people stay alive.

Even though I have acknowledged the concept of karma for decades, I never really thought, at the time, that what I was doing was accruing "karmic capital," but, perhaps, that is why I am now having my life saved.

We drive into the future using only our rear-view mirror -- Marshal McLuhan

SURVIVORSHIP - WHAT'S UP WITH THAT?

In December I told myself that I wasn't really that sick - that I'd somehow keep on going and figure out how to tame this cancer. But there was part of me that knew this is a deadly disease and over 9,000 people in the US die from melanoma every year. So even though I held onto hope to keep living, I had to come to terms with my own mortality. It may have been uncomfortable, but, under the circumstances it was necessary.

Fast forward to today when I'm truly optimistic about sticking around for a while. Although death is inevitable for all of us, putting it off as long as possible seems like a good idea - there's too many things I still want to do.

But between that acceptance of impending mortality, and then, a couple of months later, seeing future horizons expanding, there's an emotional disconnect. Part of me had to concede that I was likely to die soon and now that part is saying "Whoa, what's going on here? Why aren't you dead?" As much as I like the current outcome of my therapy, there needs to be a reconciliation with the part of me that expected death.

This is not a terribly unique situation. People who have survived plane crashes when other have died, for instance, or military personnel after being in action can get into a "survivor's guilt" mode. It is, thankfully, more common now with cancer patients who benefit from advanced therapy. It is still something that has to be dealt with, but it's a burden I happily bear.

As I did some research on cancer survivorship, I was surprised at the wide range of meaning this has to different people. Some people say you become a cancer survivor the day you are diagnosed and remain one until you die. Others argue that one is a survivor only after the successful therapeutic fight against your disease. I am not going to align with any one camp on this. My general view is that if you have cancer and are actively fighting it, or if you have had cancer and you are still alive, you are a survivor. Regardless of anyone's definition, cancer survivors are different people than who they were before any cancer diagnosis. "Normal" went away the day they heard the diagnosis. From that point on there becomes a series of resets to "new normals" without ever having the option of going back, even if the disease is beaten.

The new normal often includes challenging questioning about the selectivity of survival -- why did I survive and others didn't. About the meaning behind being a survivor -- does this mean there's something I still need to do, that I'm obligated to do? About the durability of survival -- is this just a short respite before I'm back in the same threatened position? Questions that may not have answers, but still need to be recognized.

Although good advice exists on many practical activities for cancer survivors (consolidating medical records, keeping or developing a healthy lifestyle through good nutritional and exercise habits), there aren't comprehensive guidebooks that will work for everyone. Making the effort to chart one's own course after the storm is still a good exercise, even if the wind is calm and the water flat.