Now that my chemo treatment is over and I have been declared to be in remission, I have decided to explore what I could do to maximize my odds for a good long term prognosis. I have a cancer with one of the highest mortality rates, diagnosed at the most advanced stage. I am optimistic for my long term survival, but realistic enough to understand “cure” is not the word they usually use for my condition, and recurrence is likely within a few years. My realistic goal is to have remissions that last long and manage recurrences in between with effective treatments.
I am exploring cancer vaccine trials and maintenance therapies with latest drugs on the horizon. As usual, I have been doing very intense research on these subjects. All of these options are experimental in nature. I believe when you have such a poor prognosis going in, the risk assessment analysis favors an experimental route with a large potential payoff. The kind of options and choices that will be too risky for someone with 95% survival odds for 5 years are worth the risk when you have 5% odds on the book — as is my case.
It so happened that a week ago, they held the largest annual cancer conference in Chicago. As can be expected of any large professional conferences, numerous research papers were submitted, many of which were results of the latest clinical trial outcomes. I have read all the abstracts of the papers related to my condition. And, I found some interesting common denominators. When researchers try to demonstrate the effectiveness of a new drug or a new therapy regimen, they compare the survival statistics of the new treatment against that of the “control group patients” who have gotten the standard, default treatment. When I started to read the papers, what caught my attention was not just how well or poorly some of the experimental treatments worked, but also the baseline survival stats — the stats of the “control group”, who got essentially very similar treatment as I did with a comparable diagnosis as mine. Study after study, the median remission length for women with a comparable diagnosis was within a range of 10–12 months.
This was a very sobering insight. Official survival statistics are available on the web. However, no official data is available on remission statistics. This is the first time I had empirical data that gives me a realistic view on remissions for women diagnosed at my stage. When I processed the implication of these numbers, I sat for a while with cold realization that, achieving remission after the initial diagnosis is only a tiny fraction of all there is to it when it comes to long term survival. Recurrence within 12 months of initial remission bodes poorly for the longer term prognosis as it limits the treatment options that are effective for the patient. Subsequent remissions are likely to be even shorter. One can soon embark on a full time career of near constant cancer treatment with a worsening outcome at each successive try until all the tricks in the bag are exhausted — and we all know what this means…..
Three weeks ago, I felt like I won the lottery. Getting into remission so easily after a standard treatment was never a given for me considering where I started. Now I realize that I have to beat even greater odds if I were to make good on my promise to my husband and kids that I will emerge a long term survivor. I haven’t even finished the victory lap, and the race is starting all over again.
On a short term basis, life might be easier if I were to believe that what will happen will happen, and it’s out of my hands. Fatalism can be very seductive. It absolves you of any responsibility and guilt. You get to do what you please and have a veneer of normalcy and freedom of choice. But, I am constitutionally incapable of pulling off such a feat. I have always been under the delusion that I have a choice to decide how I respond to a given situation and power to control what happens to me. I don’t know how much of my easy remission was due to pure luck and how much of it was due to my rigorous regimen of doing everything right, which, much to my husband’s dismay, included eating a bulb of garlic a day! in addition to exercise, visual imagery, dietary supplements and radically healthy eating habit. If I were to believe that my discipline to stick to this regimen helped me achieve remission, it goes without saying that I must keep it up to avoid recurrence. It’s one thing to do this for a finite period of time to emerge a winner for remission. Even for an incorrigible, self flagellating, Type A personality masochist like me, the prescription of lifelong commitment to such a regimen is a daunting thought — and can be downright depressing….
All through my research, I have yet to read the first person account of having lived with the same diagnosis as mine for more than 10 years. If I were to be there to torture the grandchildren the same way I did with my kids by taking them to all the boring museums in the world, I would have to become an extreme outlier. Deep down, rightfully or wrongly, I am convinced that I can make it happen, but it will take an unusual commitment to doing everything exactly right. This cancer of mine is a formidable partner, and it will take an extraordinary feat to forge and maintain a peace treaty. Any moment of lapse can trigger a volatile reaction. I am reminded of a movie about a terrorist who planted a bomb on an airplane. The bomb was designed to go off if the plane dipped below a certain altitude. I feel like the pilot who will have to find a way to keep the aircraft stay afloat no matter what — indefinitely.
And, there is no co-pilot. Ultimately, this is a lonely endeavor. Even those closest to me and love me dearly cannot do this for me. They can help, cheer, and encourage, but they can’t take the helm. It’s easy to forget what a lonely venture this is when you are going through a treatment. If you are half way good, you are a star performer and the theater is full of adoring fans and enthusiastic audience. There are supporting actors and actresses. They are props and stage hands. Everybody is rooting for a happy ending. By all accounts, it seems I pulled off an extraordinary performance. An element of Greek tragedy at the beginning but with a happy ending. How can you beat that? I had a perfect storyline. A cancer version of “rags to riches” — from the worst diagnosis to a remission victory featuring a courageous heroine. When the show was over, I got the standing ovation. Most of the audience gave raving reviews and went home inspired.
Yet, the show is not over for me. It has only started. The part that was an open performance was only Act One, and I don’t know how many more acts there are — I hope many. Now the theater is dark, and I am left alone on the stage, yet I still dance and sing because that’s what the script calls for, and the script must be adhered to no matter whether there is audience or not. Otherwise, the show will be over, and the show must go on. Paradoxically, it’s my sincerest hope that I will perform in the dark alone as long as possible. I know what it means to open curtain. I would rather that my plight does not become a public spectacle again. And, I also know that I am to perform alone in a dark empty stage night after night so that I won’t have to have a public performance. That amazing performance I just had that resulted in repeated curtain calls — I would like to avoid them. I hope I had my last curtain call. One such glory was more than sufficient for me.
So, tonight I dance alone again — and it is becoming a comfortable routine, but maybe I will do a bit of improvisation. A variety is the spice of life, as the cliché goes, but so true. Perhaps I will substitute a bulb of garlic with a bulb of onion — the same allium family of vegetables with anti cancer ingredients.
