19 Feb 2017
Much has occurred since my last message, and I apologize for not updating you sooner. in the rush of normal events, the consequential and the inconsequential can be mixed into the current of mundane life events. I finally find myself with a quiet, rainy Sunday morning to reflect and to share.
When I tell a story, I always struggle with context, but I think context is vitally important. Context is what makes my request for your attention worthwhile. But I’ve learned context can often overtake the telling of the story itself, so I will try to be brief and concise.
In my last note, I talked about the “illness narrative”, and I find the thought process about the “quest” aspects of my disease to be the driving factors in my experience. I find it very odd, but I get energized as I consider the challenges ahead. I realize there are countless unknowns and chronic frustrations and little humiliations on the horizon, but this is my path, and I embrace it fully.
Do not misunderstand me. I am no saint. I still go through the emotional cycles of denial, irritability, anxiety, and depression. But I don’t fight it; I allow those emotions to flow and express themselves. I try to be open and explain these feelings to myself, my family, my friends, my lover. This is part of the process, be patient, be gentle, and maybe leave me alone for awhile.
I have accepted the new role of “cancer survivor” to my resume. As a statistically young person to have prostate cancer (the average age is 66), an important part of my “quest” is to share this experience and this knowledge with a wider community. Therefore, I’m now capturing my thoughts in this blog, expanding my list of friends who know, and seeking to contribute to a community.
Ok, that’s all the context stuff.
Here’s the bottom line:
Having talked with & interviewed five doctors, I have settled on a treatment course of action: I will have surgery for prostate removal at MD Anderson Cancer Center in Houston, Texas in late May.
Now if you want to know my ramblings, learnings, and feelings about the whole thing, then read on.
The path to a treatment decision has not been an easy one, but I consider myself lucky to have options to consider. I’ve been walking the hallways of hospitals and sitting in the lounges of doctor’s offices, and I am left with the overwhelming impression of witnessing widespread quiet resignation. I think most people do not have options or are unaware of their options or simply do as their doctor says without question. If I had done that. I’d have been irradiated, impotent and incontinent over 5 years ago.
While I was researching my treatment options, I found there are several significant factors which led to choosing surgery as my optimum choice:
- Extent of cancer
Since I have been monitoring this cancer for 5 years, I caught this cancer at the first moment when more robust treatment became necessary. The cancer is completely contained within the prostate, and surgical removal solves the problem. With radiation my “PSA anxiety” would continue indefinitely.
- Age
As stated before, I am a relatively young cancer patient. Undergoing and recovering from surgery will be relatively routine. By forgoing radiation treatment now, I will be able to keep radiation as a treatment option for any future occurrences of cancer.
- Life expectancy
Along with age, I hope to have a few decades of life ahead of me. Again, I want to keep exposure to radiation a minimum.
- Specialty bias
Working thru the maze of doctors’ specialty biases was the most daunting aspect of selecting treatment options; I compared the process to haggling with a series of used car salesmen. Doctors will sell you on their speciality: robotic surgery, open/tactile surgery, radiation, proton therapy, etc. My final selection was based on having a conversation with a doctor who thoroughly answered my questions, respected my knowledge, explored all the risks, and satisfied my concerns. I basically “bought into” his speciality bias.
- Insurance coverage
I have insurance coverage through my employer that will cover most of my expenses. Years ago I started to consistently select PPO coverage so I would not have any limits to available physicians - which allowed me to explore all available treatment options. (Also, while verifying my coverage, I became intimately familiar with the patient protection regulations under the ACA law. The wording of my insurance coverage practically matches the wording of the law. I am convinced without these regulations, I would be looking at either financial ruin and/or being uninsurable in the future.)
- Risk tolerance for side effects
While comparing the side effects of treatment options, I found myself preferring the relatively short term physical side effects of surgery over radiation. Once I understood that ANY treatment option basically kills the prostate – i.e. there is no such thing as localized treatment - I was more prone to choosing surgery. Generally speaking I have a visceral aversion to (and low confidence in) radiation.
- Expense/Geography
I was able to afford the travel in order to visit many clinics. Also, my job gives me the flexibility to work remotely and not take time off during these visits. I eventually settled on treatment & recovery away from my hometown - in Houston where my mother fortunately lives.
Also, I must confess that my thinking about treatment options became very biased after walking into the facilities at MD Anderson Cancer Center. This cancer research facility is completely different than any other place in terms of physical environment and overall approach to treatment. In Nashville, my doctor was ready to cut me open in a few weeks after a single conversation and a pelvic CAT Scan. In contrast, at MD Anderson, I have experinced the following:
- a full skeleton scan (cancer spreading to the bones is a high risk)
- extensive blood work up
- meeting the head of the urology department
- an extensive discussion with my surgeon and his staff
- a consultation with a dietician and physical therapist
- DNA analysis
- fertility services
- an extensive library of reference books and cancer studies (including a humor section!)
- a detailed MRI of my prostate (involving an hour in a coffin-like apparatus with a probe in my butt) that revealed a more detailed picture of the cancer and potential complications with surrounding nerves
MD Anderson is on the cutting edge of electronic medical records, providing a personalized portal with all of my test results, appointments, payments, etc. Furthermore the staff will provide an advanced pathology report after the surgery, and all post-op risks and issues can be addressed by the staff.
If you are interested, here are links to some animated videos of the robotic surgical procedure:
I find it is rare to find a Western doctor who cultivates a sense of teamwork, and I have found these types of doctors are common at MD Anderson. We have agreed that my recovery and probability of a successful recovery would improve with better physical conditioning. So I am spending the next few months getting ready physically for surgery.
While building my symphony of support, I met with my old Oriental medical doctor. (I’m still convinced I could have managed this disease as a stage 1 cancer if I had stuck with my herbal & dietary regimen.) But there was no second-guessing or wallowing in hindsight during our discussion; we focused on the future: preparing my organs for surgery, outlining a course of exercise, diet and herbs, and maintaining a non-toxic lifestyle. I find myself rededicated to meditation and prayer and inspirational readings.
I feel like I have dome my homework, maximized my options, and made informed & optimal choices. I acknowledge there are limits to being prepared for the reality of the procedure and experiencing the side effects - on both myself and my loved ones. There are unknowns about body image, sexual & physical dysfunction, potential complications, insurance market uncertainties, etc, but I can not control those concerns and will simply have to deal with these issues as they come/if they come.
At the time of this writing I have three months to go until surgery. While preparing my body, I have plans for enjoying a beach trip to Mexico, some great shows at the Ryman in Nashville, Fiesta celebrations in San Antonio, and the final opera of Wagner’s Ring Cycle at the Houston Grand Opera. I expect to be much less active for remainder of the summer.
I would expect my next update would be close to my surgery in late May.
Thanks for your thoughts and prayers.
Best,
-Burton
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