Be Your Own Advocate

It’s 1982, and tomorrow I am donating my bone marrow for my 9- year old brother who has leukemia. I am his only hope. I’m scared for him and truthfully just plain scared because tonight will be this first night I have ever stayed in a hospital.

I have never felt so vulnerable. Hospitals do that. Make you feel vulnerable and in this state we often give away our power.

A nurse’s aid waltzed into my hospital room and tossed down my chart and flipped it open. She then excused herself and left my chart unattended.

Did I peek at my open chart? Hell yeah. And what did I see, but instructions to shave my posterior. This made sense as I knew that they had to extract my bone marrow from my ileac crest, i.e. tale bone.

The aid returned and carefully unwrapped her razor and got out some medicinal form of shaving cream and began to shave…my anterior! Yes, she shaved my bush clean off, this before it was fashionable to remove all of one’s coverage leaving women to look like 3rd graders.

She then, of course, had me flip over and shaved my backside for good measure.
Here’s the thing, I clearly knew the difference between anterior and posterior. Anterior=front, posterior=back. But I felt so vulnerable that I did not have the courage to speak up, even to an aid, who clearly isn’t as intimidating to question as a doctor!

For weeks after, I would try to discreetly rub my itchy pelvis into anything I could find for relief. I actually had fun entertaining my co-workers with my various ways to scratch my itch. It added levity to such a grave situation and for that aspect, I was grateful.

Unfortunately, my brother passed away five weeks into the transplant process. As you can imagine, immense grief ensued.

It’s now 1984. I have just received a diagnosis of Hodgkin’s Lymphoma. My left collarbone is full with a softball -sized tumor and my chest has a tumor a third of its size attached to my heart and lungs.

As I lie under the cobalt machine, radiation technicians are attempting to align me just right for my treatment. As I’m being positioned I am informed that I will be receiving an extra dose of radiation on my right side.

Huh? Right side? Even in my heightened state of anxiety, I knew this was an error…one with potentially serious consequences for me!

Alas, a breakthrough. I speak up, albeit a bit too politely, and maybe even a tad apologetically, but I do it.

“Excuse, me. Don’t you want the added dose of radiation to go to the side where the softball sized tumor is located?”

All of a sudden there is a huddle of professionals, including the radiologist, in the safety zone. That closed room off to the side to keep workers administering radiation safe. It’s not at all comforting when everyone runs for cover from what you’re being doused with, but I digress.

The time out is over, the huddle breaks and the officials on the field have issued a penalty. The play will be re-done, this time with the extra radiation going to the left clavicle!

Although I was scared out of my wits, I did find the courage to speak up, which is a good thing considering the stakes were much higher this time than just having an itchy vee vee.

Now, nearly 30 years after my initial diagnosis and 20 years since my own bone marrow transplant, it’s still a work in progress to stand up for myself. On occasion, want to kick myself for a question I didn’t ask or a test/treatment that I didn’t demand when leaving the doctor’s office. However, I have come a great distance and I’m now much more cognizant of that fact that I am in charge of my own health and body which translates into a much happier and healthier me!

1 thought on “Be Your Own Advocate”

  1. Thank you, friend, for sharing your experience and reminding others to find their voice (their own or that of a loved one) when receiving medical care. As one who is both a health care provider and who has stood by the side of loved ones receiving treatment, I know the truth and wisdom of your words.

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