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I'm the 1%... a medical oddity

Episode XCVIII - I'm a weirdo!

My 2nd appointment during the December Dr. Madness visits was to the Radiation Oncologist. Thank goodness it was just a follow-up visit. Time to check out my boobs, again!

Going to another appointment...

The Radiation Oncology group has multiple offices. There is one in the cancer center... it's nice. One at a hospital with valet parking... it's super nice. And there is one in the basement of a medical tower below the actual building... that is where they put me. They want to hide me!!!

While the other offices are definitely fancier, I love my group in the basement. We are a bunch of outcasts, misfits, and troublemakers. I fit in perfectly.

After chatting with all the nurses and making my typical office routine I was escorted to one of the doctor's waiting rooms. The room looks like almost all doctor's rooms - bland and boring. I love catching up with my nurse. She has been with me my whole radiation treatments and we were ready to talk. She is hysterical and (like always) we got off topic. We talk so much I think we forget there are other patients waiting!

The Rad's doctor is one of my favorite doctors. Not only does he do a thorough physical examination of my breast, my skin, and any issue I bring up - he actual listens to me. He takes in all of my complaints and appears to genuinely care. Today was no different. I listed all of my ailments and problems - and there are many! Then he asked about my lymphedema and my side effects.

Then he said something I thought was great - I was the 1%. I was in the small minority that got lymphedema with such few lymph nodes removed. I was the small minority that got the weird fibromyalgia-like pain and nervous system side effects. I was that tiny itty bitty 1% of patients... go figure!

Now I am a smaller percent of a small percent...

Statistics show that the majority of breast cancer patients are over 50. I was in my 30's when I found mine... so I was younger than a lot of other women. Now I am in the even smaller % who got freaky rare side effects. Yeah... I am special!!!

We discussed how my age (having small children under foot & being so active during treatment) could have only amplified my symptoms. That normally the patients with breast cancer are older, empty nesters, having more time to actually rest and focus on recovering. I, on the other hand, spent my treatment like a crazy person... running around after children... forgetting that I needed to take care of myself!

While we spent a lot of time talking, he still told me to talk to the Oncologist. That the Onc should be offering up solutions. (No doctor wants to step on the Onc toes... they do not dare for some reason... it is almost as if he is the Doctor of all doctors... what do you do when that "Doctor of all doctors" does not do anything?!?!) Since I have an appointment next week with the Onc I am offered little more than his ear. However, his listening is more than what other doctors have done. Listening is highly underused in the medical industry!

In my head...

Well, I was heard. I do not have any real solutions, but I do feel like someone cares. And to be honest, this doctor only really worries about the effects of radiation. Overall, my skin looked good. He did not like the issues with swelling in my chest, underarm, and arm areas. Obviously the radiation added to these symptoms and to the lymphedema issues... I am his 1%... that makes me extra special right?!?! Or extra weird?!?!

Ok, I know I am not literally a 1% for all of you out there who are all statistics and accurate and serious. I am just a medical oddity instead of a medical norm! AKA - I am weird!

“I am weird, you are weird. 
Everyone in this world is weird. 
One day two people come together in mutual weirdness and fall in love.” 
- Dr. Seuss

Episode Reference: Creep, Radiohead song
(a few bad words in the song...
I warned you!)


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