You have heard the song. "Nothing Could be Finer Than to be in Carolina". It was one of those days in March 1990-a beautiful blue sky, perfect temperature, and a light cool breeze. Best of all-we had gotten up early to spend some family time at Disneyworld. I was still in solo practice in Beaufort SC so this was going to be a very welcome break.
We headed out in high spirits and had been on the road a couple of hours. We were crossing the beautiful marshes on I-95 in south Georgia, when the pain hit out of nowhere and suddenly. The moment is seared in my memory like it was yesterday. I had been a doctor almost 20 years and I had never run into anything like it. It was in my back, on the right, and just below the ribs-right where the kidney is. So my first thought was kidney stone. But the pain was not 10 out of 10, it was five or six out of 10, so that did not make sense. I had waited for this time off too long and I was not going to let a little pain stop me. The pain lasted about 6 hours and went away as mysteriously as it had come. Must have slept wrong or something. I just blew it off.
We got home a few days later and resumed our normal lives, but a week later, the fever, sweats, and chills started-at night. It was just as strange as the pain. In fact, it was like being possessed. I was fine during the day. Then the sun would go down, and I would begin to shake and sweat-really sweat-changing the sheets sweat. The sun would come up and I would be fine. Exhausted. But otherwise fine. It was crazy. I got some blood and urine tests. Nothing. I thought maybe I had caught some bizarre infection from a cat box. My own case demonstrates in the most powerful way possible—the man who treats himself has a fool for a physician.
I pulled my call coverage partner, Dr. Shenoy, aside and told him I was in trouble and he ordered some more tests. A CT scan showed 8 plum sized lymph nodes around my aorta and kidney arteries. That meant it was almost certainly cancer and it had spread. The cat was out of the bag. In an instant, everything was different. We all have this vision of our future, our plans, our aspirations. Poof. Gone. Everything was changed. I had great respect for Dr. Ron Goldberg, an oncologist in Savannah, and Dr. Shenoy referred me to him.
This is when the Star Chamber part of the story began. They tried to save me a surgery by doing a needle biopsy through the back. I swear the needle was a foot long. I had a bone marrow biopsy. The needle was as big around as a soda straw and they ground that one into my pelvic bone. That sounds awful, but ended up not being too bad. Ultimately, I needed major surgery at Memorial Hospital in Savannah. The incision went from the breast bone to the pubic bone. They removed my spleen and the lymph nodes. I had large cell lymphoma.
Dr. Goldberg came in and he told me the diagnosis. I told him, " I can't play here. I am in solo practice. I have two kids starting college. I need to know what the deal is. He replied "Well, since you put it that way, you will be cured or dead in six months.” Aggressive chemotherapy cures 80% and adding radiation cures another 5%. I opted for both. I did not want to wake up in a year with recurrent disease and wonder if I would have been cured if I had added radiation. After about 5 days I was ready to leave the hospital. My friends, family, and patients had provided fantastic encouragement and support. I needed a van to get home from the hospital. It took three hospital carts to get all of the flowers out of my room. One of the aides looked at me and said, " who the hell ARE you, the governor?"
I knew about the stages of grief and moved to acceptance quickly. Very early on I made these two resolutions. " I am going to live each day as normally as I can, and I am not going to die until I am dead." After I was out of the hospital a week, I returned to work half days. The other internists in town stepped up and took my night and weekend calls. They rescued my practice.
I resolved to do everything the doctors recommended. It was life or death. The MACOB-B chemotherapy lasted 12 weeks and it was pretty nasty. I took enough methotrexate to kill me and then took folic acid to rescue myself. Adriamycin is called the red death because it may cause congestive heart failure. Vincristine causes nerve damage and numbness in the feet and hands and of course I lost all my hair. I had my once a week infusions on Friday so I could recover over the weekend and go back to work Monday. Doctors can be really funny. Dr Gehlsen, the Beaufort oncologist managed the chemotherapy. I told her my hands and feet were really numb (I still have severe neuropathy) She smiled and said, "Talk to me when you can't button your shirt." Those were dark days. When the chemotherapy was finished there wasn't much left of me. It was August, and just standing in the yard at age 43 completely exhausted me. I did not much care if I lived or died.
The treatment team gave me 3-4 weeks to recover and then started 5 weeks of radiation. I still worked half days. I went home to collect myself for a couple of hours at 1 pm and then walked from the house to the car for my wife to drive me to Savannah for radiation treatment. I found out personally what the Pavlov dog story is all about. When I left the house to get in the car, I threw up in the yard every day. When it was all finally over I was a mere remnant of my former self. I could not do anything beyond my half day at work, but I got a treadmill. At first, I could only walk slowly a minute, but I kept at it and within 6 months I was much better. Much better.
To this day I believe this was the worst thing that ever happened to me and the best thing. It was a close call. I suffered terribly and nearly died. My empathy for patients and people in tough places increased exponentially. I learned the things we take for granted mean the most. People mean the most. I don't know how people make it through these things alone. I learned how much family, patients and friends care about me and how I love them. I learned caring and love-being there- is the core. The little things bring us the most pleasure. Watching a bird at the feeder. A beautiful sunny day. A dolphin breaking the surface in an inlet. Helping a sick patient or a friend. Those are the things that really matter and bring joy into our lives.
Ten years before my diagnosis, I would have surely died. I received best practice care, and here I am thirty-one years later-31 years! What a gift! I saw my sons become fine young men, marry great women, and between them they have 7 amazing grandsons. My sons graduated from college, received masters degrees and are leaders in their chosen profession. I am not an oncologist, but hopefully I have paid some of the debt back by bringing better care for cardiovascular and related diseases that I do know about. If you find yourself in a very dark place, take heart. There can be sunshine on the other side.
Lesson- I have already talked about some of the lessons but one point must be emphasized. In my capacity as a doctor, I came into contact with people who were dreadfully ill on a daily basis, but I never really appreciated this fact. Everything that I love about life—at least almost everything depends on my health—visiting my family, engaging in my outdoor activities, working, going to a nice restaurant, watching a movie—everything. When I was done working a half day, I could do nothing. I am much more driven to protect my own health and the health of those I care about.
Most of us who have a serious, chronic illness crisis are never the same. Make no mistake, I am one of the luckiest guys in the country and I know it, but when you have these heroic treatments, do what you can to make sure they work and that you need them. Get the best care you can. Develop a relationship with a doctor you really trust because so many of these treatments have lasting side effects. This is a situation where the stakes are high.
My heart goes out of rhythm periodically because of one of the chemo agents I took. I still have neuropathy that is pretty severe and impacts my balance. I was erect prior to the radiation treatment and now my spine has a sort of S curve and I am bent over. I have discomfort if I walk or stand very long. I have lost three and a half inches of height. Surgery in the abdomen causes scar tissue formation, and I have a partial intestinal obstruction about every 6 months. That is very painful. As the bowel contracts in an effort to move material along, the pain builds, and then it eases. Here is the point. Dramatic treatments have dramatic effects for good and ill. Be sure you need them. Still, best practices saved me, and I could not be more grateful. I surely would have been dead, and I am still here!
Hi Bill, much appreciate hearing your story. I'm kinda similar. Cancer diagnosis at an early age (x2), and I'm trying to minimize the chances of recurrence / maximize lifespan.
My research has repeatedly pointed me to the value of metformin, statins, aspirin, ACE inhibitors --- drugs I've been on since the removal of Stage 1 ccRCC. I also took intermittent dose (6mg/week) Rapamycin for about a year. Might go back to it in the future.
More recently, I've become fascinated by i) GlyNAC (translates to 2.4g NAC, 2g glycine daily for me) and ii) phytonutrients with life extension potential (green tea extract, curcumin, ashwagandha, boswellia, ginger, milk thistle...). I think the science behind these is getting nearly as strong as some of the top longevity interventions (because the effect size is so significant).
Anyways, I have a blog here. Kinda similar to yours (though I'm not a Dr). Evidence for every drug/supplement I'm taking. I'd suggest checking out NAC, Glycine, Glucosamine and other phytonutrient stuff.
Wishing you and the readers the best of health. Really enjoy reading your blog and recommendations. Thank you!
https://mylongevityjourney.blogspot.com/2021/09/my-current-treatment-plan.html
A moving story well told. Adds great credibility to your campaign to improve health care.