Ten days ago, I finished the recommended external radiation treatments for Stage One endometrial cancer - twenty five in all - and spent the week-end in bed recovering. The external radiation beams blast the affected area (in this case what’s referred to as the “vaginal vault”) from eight different angles, the machine moving in a circular pattern as it works its way around the body. From a tattoo made before the first treatment, sticky patches with a black “X” on them were placed on my lower torso to guide the machine’s rays to the right target.
The beams are highly localized to where the cancer is hanging out, and any radiation dissipates instantly, to the point where the technicians enter the room seconds after the last blast to help me off the table and prepare it for the next customer. The head technician, Jerry, told me he had been doing this job for forty years with no adverse effects. Upon departure, I thanked him for taking good care of me, and he asked that I please not bring him any more business. I told him I would try my best to comply.
So now, I need to set up appointments for brachy-therapy. The term “brachy” means “short”, referring to the short distance between the radioactive seeds and the cancer cells. A wand carrying a radioactive payload is inserted into the vaginal area and is left there to duke it out with any cancer cells that may still be active. Oncologists have become very wary of these unpredictable cells over the years, cells that may decide to decamp to another part of the body and begin a trouble campaign, and would rather over treat a patient than to leave anything to chance.
Symptoms from brachytherapy treatment include nausea, possible vomiting, diarrhea, urinary tract issues, exhaustion, and a narrowing of the vaginal area. For this last symptom, the patient is asked to use a dilator to keep the passage open and functional. There will be five treatments, each with a break of a few days in between.
If this proves not to work over time, my last option is chemotherapy. It’s not likely I will have to endure that treatment. Fingers crossed.
Food is just beginning to be palatable again. The external radiation produces a constant metallic flavor that is off putting for most food, so all the pleasure goes out of eating. I’ve been mostly existing on grilled cheese sandwiches, which for some reason, still taste okay. A friend said she could only eat mashed potatoes. If you’re looking to lose some unwanted pounds, this certainly does the trick!
About three weeks ago, someone called me to find out how things were going with my treatment. The woman was from a company called Blue Sky, and she explained that she had been contracted by my PCP to help out with patients’ needs. She is the ombudsman of the medical world. This wonderful person, named Jen, asked how things were going, and if she could do anything to help out?
Could she? Hallelujah.
Not only does she dig around for answers for me, but when I call her and she doesn’t pick up, I get a call back within fifteen minutes. I am suddenly not alone in my quest to be cancer free, I have a steady ally who will be with me until the treatment is done. She now knows my whole story, and listens intently to my daily experiences. She tells me what she can do, and what she can’t (she couldn’t get me back with my original oncologist, who I loved, because the contract with my PCP had changed), and if she doesn’t have an answer, she investigates until she can get me an honest one.
The problem I now face is that I, apparently, have to find a suitable brachytherapy doctor. Because my radiation oncologist doesn’t know who my insurance will approve, and I need to get this done ASAP, I was assigned the task of calling my insurance company, getting viable names of Brachytherapy doctors near me, and passing those names along to my Primary Care Physician through Jen. Then he generates an approval form, which is mailed to me (snail mail!), and when I receive it, I call the brachytherapy doctor and, hopefully, set up the appointments.
Jen is my partner in getting this done, although she can’t make the call to my insurance company or to the doctors, she can help generate the approval and find answers for me.
But this experience has made me wonder…what if there was no Jen and I wasn’t conversant in using modern technology? And what if I was alone? Or had dementia? Or didn’t live near a large population? How would things get done in any of these scenarios? Our medical system’s way of treating patients must be brutal to anyone who has little to no support mechanism to help solve these issues.
I have also begun to question why cancer showed up to begin with. I have no known history of cancer in my family, and I live a very healthy lifestyle. When I was going through menopause, I was prescribed estrogen to treat the symptoms. That is now a known cause of endometrial cancer, which is the term for what I’m experiencing. Progestin is also prescribed to dilute the chances of cancer, but it is not an ironclad preventative.
What is the good news in all of this? To me, the good news is partly that we are making progress in the defense against cancer. When I was younger, I remember that any type of cancer was pretty much a death knell for the patient. But it is also that our wonderful brains are being studied, finally, in a serious way. The final frontier of human health is coming into focus as we begin to understand the powerful healing the brain itself can accomplish. The next decades should bear fabulous fruit in the study of disease and behavior, creativity and longevity.
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