Just because you give it a name

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.

Stunned silence.

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.

3 thoughts on “Just because you give it a name”

  1. Well said, you ROCK. It’s a shame you had to force the issue. I will remember your words.. Scans for me at the end of the month.

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  2. My grandfather, who was a doctor and surgeon, and much more (he was advocating for a national health care system for the US starting in the late 1920’s. He was much more than a county doctor that most thought he was. He would have been very proud of you..and he would have shaken your hand..and then probably hugged you for ‘reminding him just ‘who he was”a doctor’ not a toy wind up doll. (He died in 1970.) He constantly reminded staff (all of them), they a person was a human and all parts of a human were to be cared for… He constantly reminded interns and residents that they were to LISTEN and PA”Y ATTENTION to what a patient or a family member says….and oddly enough he taught a lot of his patients to speak out…His appointments, like our local PC here, were NEVER on time..because he ‘talked with his patients and heard them. I also can remember him coming home and being so upset because he could do nothing for a patient after a certain point.. He reminded me, that doctors and famous people (yes, he did know a lot) were human beings who put on their pants the same way, one foot at a time…. You doctor will be the better, hopefully, if he heard you. for what you said today.. Thank you.

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  3. I had a similiar issue when I had a cartilage implant put in my right big toe. I kept complaining about the pain and scar until I got a script for both…but the Doc was only interested in the money and handed me off to a helper. She didn’t even talk about therapy, so I never got any physical therapy…suffering for over 3 yrs. I finally got the toe working myself, though it will never be 100%. As for my take on Cancer, there will NEVER be a cure! It is the biggest cash cow the medical profession ever had! The system is flawed…the has to be a better way.

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