Professional Patient

Medical observations of the bizarre kind

No chemo!

Those two words are blessed music to my ears.  As I go about this “living with MS” journey, and this “dealing with breast cancer” journey, the words “no chemo” are helping me through.

Though very fortunate, this latest diagnosis has brought new weirdness into my life and it hasn’t gone unnoticed.

First, the oncologist who told me that she was not recommending chemotherapy was beautiful, and friendly, and awesome (did you hear the “no chemo” part?) but looked to be about 16 years old.

As did the doctor who performed the second biopsy as well as the breast surgeon AND my new ophthalmologist.  It was like they came from their own high school medical cheering squad and I was the awkward, acne covered 13 year old in awe of them. 

When did I get old enough to have doctor’s years younger than me????

This oncologist who told me “no chemo” didn’t let me off the hook completely; she said I needed a, GASP, colonoscopy.

Now, I know in the medical world one colonoscopy is nothing compared to the hell that I’ve been told is chemotherapy.  Even if a colonoscopy is for old men and gross, I’m lucky that’s her recommendation.

(And don’t worry, I CANNOT imagine any scenario where I would blog about that test!)

My curiosity here is how did we go from breast cancer to colonoscopy?  They are two very different parts of the body. I know she explained it, but it was all too much to take in, especially since the words “no chemo” were pleasantly reverberating in my brain.

Her explanation looked, to me, something like this-

 

Speaking of body parts, I know that I’m an open book but when did it become ok for people to publicly ask me about my body parts?

I was in my hometown and took my sister to do her laundry.  While at the laundromat we met up with a guy we had known forever.  His girlfriend is a breast cancer survivor, he had heard about my diagnosis and had been on this unfortunate cancer path before.  He began to ask me about the treatment of my boobs right there, in the laundromat!  He was respectful and I do believe in sharing medical information, so I wasn’t offended.  I just found it very, very odd…

Until I decided to go to Mass at my hometown church later that day.  Walking into the vestibule I saw my favorite priest.  He, too, had heard of my medical news and he too began to ask me about the treatment of my boobs, right there by the holy water font!! 

Ok, neither used the word “boobs” and their questions were intelligent and concerning, but how did my life turn in a way that lead me to talk about things like my boobs in public places?

It takes a professional patient to find herself in that position and I realized that’s what I had become.

When MS forced me to stop working, I struggled with what to say when someone asks me what I did for a living.  I now had my answer; I was a professional patient.

I felt beyond qualified for this title.  Perhaps, with the over 25 appointments thus far in 2019 alone, six just last week, I might promote myself to Executive Professional Patient.

Yes, I like that.  It has a nice ring to it.

(Will insurance pay for my new business cards?)

Observing medical weirdness is chief in my new job description so please allow me to share some more with you.

Next up, per order of the oncologist is genetic testing.  This is not the genetic testing of TV commercials where you spit in a tube and suddenly you have millions of people around the globe claiming to be your long lost cousin.

I have enough trouble keeping up with the cousins I have now; so why add more?

No, this is medical genetic testing and the first step was paperwork which involved filling in an online family tree.  My family tree is less a gorgeous, well-shaped elm but rather a bunch of straggly bushes all clumped together.  I would love to see the medical geneticist’s face when he received my form.

I didn’t have any trouble sorting through my immediate family members but when I got to 2^nd, 3^rd, 4^th cousins it became a struggle.  Then the computer gave me an option of adding/deleting family members!

How cool is that??

I tried adding Ryan Gosling, Emma Stone and Ellen to the tree, but they didn’t RSVP to our next family reunion.

A couple of those fourth cousins did and though I tried deleting them several times, they still showed up.

For you readers who are most interested in my “living with MS” journey, this one is for you.

Due to MS, the left side of my body has always been weaker than the right.  Because of this, my balance is off and high vehicles are harder to get into.  I have a friend with a jeep and trust me, the sight of me getting in and out of it is not a pretty one.

But since the surgery my left side has gotten even more numb.

When my neurologist tries to stab me with his safety pin at my next appointment I probably won’t even notice until he draws blood.  And if a friend drives me to that appointment, I may just need a forklift to get into their vehicle.

(Personal question- can you purchase a forklift on lay-a-way?)

My mom and our friend Annmarie came with me to meet the oncologist.  She told us about her not recommending chemo and then said she wanted to examine me.  My mom and Annmarie couldn’t get out of the room fast enough which I thought was a little rude, especially of my mom who claimed to have changed my diapers back in the day.

(I don’t think she actually did. I think I was such a good baby that I changed myself.)

Anyway, after the exam I went out into the waiting room where my mom had a huge pair of scissors in her hand and was chopping away at the doctor’s plants!

This seemed strange.  Annmarie said she had asked for the scissors so she could take a clipping of the beautiful spider plant home, but I think it was really that she was trying to lower some of my copays with her horticulture skills.

Finally, I would be remiss in my duties as a professional patient if I didn’t share this bit of medical oddity, courtesy of Annmarie.

For over a week she claimed she smelled cigarette smoke everywhere she went; to her job, to her gym, to the oncologist’s office with me, everywhere.

Annmarie is not a smoker and the smell was so intense she often thought she would pass out from it.

Or at least throw up.

“Are you sure it’s not a doggy smell?  You do have four dogs.”

“No, I know it’s not a dog smell. I know dog smells. It’s cigarette smoke.”

I wasn’t so sure.

Two of her dogs were new, perhaps they came to her with a nasty habit? If so, where were they getting money for cigarettes? Rumor has it that they are $10 a pack now.

This bothered Annmarie so much she did the wise thing and searched for this symptom on the internet.

Turns out it’s a thing.

Who knew?

It even has a name, phantosmia, and its causes can range from an allergy to a brain tumor.  That news had my friend running to her doctor and after he stuck a scope up her nose, eeiiiwww, they diagnosed her with a sinus infection.

I’m not so sure.

I think her male dog might be a Marlboro man.

Well, friends, one of the perks of being a professional patient is that you’re allowed regular rests.  Don’t worry, I’m sure I’ll have more medical observations in the future.

In the meantime, I know many of you are professional patients too.  What medical oddities have you witnessed?  Please share in the comments below or post your own story on the Giggles page.