Over the next few months, I asked my oncologist to schedule me for bone scans to see if there was a mass in my pelvis causing deep pain. Twice, the results were negative. I distrusted those results because of the old 1970's monitor that was used to view my skeleton. There had to be something making sitting even more painful than it had remained since my first major cancer surgery.
Finally, I visited my colorectal surgeon, who obtained insurance authorization for another PET-CT. There was now a much bigger, wildly metabolic mass in that same spot (my left buttock, adjacent to the sciatic nerve), and two more in nearby locations, and five small nodules in my lungs. These were not tumors my surgeon could remove. He asked my insurance to authorize a consultation with a doctor at USC Norris Comprehensive Cancer Center, a place not in my "provider network". Ultimately, I had to drop my managed care plan, but that's another story. I searched for and found, at that very hospital, a surgeon who was a world-renowned musculoskeletal oncologist and surgeon.
I ended up with a new oncologist at Norris who, at first visit, told me statistically a person in my condition could expect to live six months, but that he could extend my life by up to six months for each of five possible chemotherapies that might be applicable based on results of genetic testing of the original tumor. When the test results came in, I was only eligible for three of the five targeted therapies.
I opted for surgery instead of the "palliative" radiation this oncologist referred me for. Previous radiation had caused far more damage than I could ever have imagined. I was determined to survive, and I was determined to see Dr. Lawrence Menendez, superhero.
The surgery was successful but for months my wound wouldn't heal properly due to severe radiation damage. I had a plethora of procedures and finally a non-cosmetic plastic surgery to get me back to the place where I can resume writing with my usual sense of humor. I'm still doing chemo, but the remaining tumors are shrinking, I'm handling the side effects well (except for the trauma of thinning hair), and I'm now finishing the book for sure... instead of cancer finishing me.
It may take a couple of months for me to get the rest of the story written and edited, but I'll be keeping you abreast of my writing and editing progress, so you'll know it's really coming along, as am I. Everyone's cancer journey is different, but I hope that by taking you along on mine, I'll help you avoid some of the pitfalls of an imperfect "system" of healthcare, imperfect doctors, and of believing that there is nothing you can do if you don't get sensible answers for symptoms that distress you. I hope you'll buy my book for yourself or a loved one who's been diagnosed, and I hope it helps you hold on to hope, chutzpah, and happiness despite disease.
Most of all, I hope you laugh. Laughter is good medicine, and we all need as much of it as we can to stay healthy and whole. Cancer is a killer, but let's not let it scare us. Okay, be scared. BUT-- Be bold, be vigilant, and demand answers when the ones you are given make no sense.