I have become fairly astute during these years, about the patient end of medical treatment of serious illness. And become more and more disenchanted with doctors as care-givers as opposed to being what they really are – distributors of treatment.
From assertive to aggressive
Almost seven years ago, I began the Cancer Grand Tour. After an initial misdiagnosis of type by a pulmonologist, I met the man who has been my oncologist ever since. He and I clicked immediately, and many have heard me say that I love him. He treated me for Anaplastic Large-Cell Non-Hodgkins Lymphoma, and got me to a brief remission. When that failed, he hooked me up with my transplant doctor, and did the conditioning for a stem cell transplant. Finally (I hope!), several years after the transplant, he was part of the team that treated my Invasive Ductal Carcinoma Triple Negative breast cancer – surgery, chemo, radiation
I have become fairly astute during these years, about the patient end of medical treatment of serious illness. And become more and more disenchanted with doctors as care-givers as opposed to being what they really are – distributors of treatment. The whole body-mind-spirit concept seems completely beyond them. Great technicians. Lousy empaths and communicators.
More and more, I have heard from women (true confession: I never asked a man) that they just couldn’t communicate with their doctors. Not that the women didn’t speak; that the doctors didn’t listen. Actual communication is not on the checklist.
Knowing that I had a routine appointment today with my doc, I began rehearsing a speech. And I got one down pat. Part of these appointments, since the breast cancer, is that he does a breast exam. Now, the backstory:
My treatment began with surgery. Traditionally, it should have begun with chemo. I couldn’t begin that way. The traditional pre-surgery chemo cocktail is loaded with Adriamycin, which carries with it a lifetime limit. As this therapy was also part of my treatment for Lymphoma, I was already almost at my lifetime limit, and in danger of permanent heart damage. The chemo cocktail used post surgery uses different drugs.
Hence, surgery first. But with a much larger target. Resulting in a much larger incision, and a larger amount of scar tissue.
Almost three years later, I am still in daily pain. Some days, just an ache. Other days, intense. Many daily movements, excruciating.
I have had regular visits with both surgeon and oncologist. Two to four times per year, for almost three years. Each time, I talked about the pain. Each time, their exams resulted in the diagnosis of justscar tissue. And nothing beyond that.
I have had it. Today, I would fight back.
I refused a gown when taken to an exam room. When my doc entered, he noticed, and asked why. I told him we needed to have a chat. I told him about previous visits with both him and the surgeon…about me telling each of them about the pain…about them “poking around” and telling me “It’s scar tissue”. Then I told him “Just because you give it a name doesn’t end the pain.” (Feel free to use that line – it took several sleepless nights to get it just right.)
I told him about pain relief I had tried. Tylenol. Expired Oxycodone. Cannabis salve made for me by a friend who lives in a state where it is legal , shipped to me and used by me illegally. I told him the Tylenol did nothing. I didn’t want to fall into the opioid trap. And the salve gave considerable relief, but carried with it a distinct odor and stained everything it touched. But. I said that I believed if there was relief in the cannabis salve, there must surely be some legal (for me) medication that he could prescribe.
He said “No”.
I grew more forceful. He retreated. Said he could sign the permission for cannabis for me, if I wanted it. “And there is lymphedema physical therapy…” He trailed off as he saw my face. I told him no one had mentioned physical therapy before.
He promised to have his staff set up referral contact with the PT providers. He promised to sign the forms from the State to give me access to cannabis dispensaries. (Note: last November voters in MI made recreational pot legal, but the process won’t be complete for at least a year. Currently, cannabis is available only in medical marijuana dispensaries and only with forms from a doctor.)
For the first time, our visit ended with a handshake rather than a hug. That makes me sad, but I am proud for standing up for myself and proud that it was obvious by his demeanor that I penetrated his technician mode and reached his empathy mode.
Just because you give it a name doesn’t end the pain.