Skip to main content

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!)

Comments

Popular posts from this blog

giving your 16 year old scissors

New Traditions Losing my hair - it's going to happen. When I did this in 2013, I waited to cut my hair once I was further in treatment. I didn't want to do that again. I didn't want to do it while I felt sore and bad. This time, I wanted to get rid of my hair before treatment.  Since I will have now done this more than once, it can be considered a tradition: cancer haircuts by my kids . Last time I did this, the kids were 6 and 13. So, this time around my son (23) opted not to cut, but watched some.   However, my 16 year old daughter leapt at the opportunity to cut my hair. Even though 10 years have gone by, she had to adhere to a few basic rules. Basic Rules: 1. Do not cut my ears. 2. Do not cut your own hair. 3. Do not cut anyone else's hair. These rules still hold up and are the general agreement we make before I put scissors in my kid's hands to chop on my hair!  And the tradition isn't the same without going outside (weather permitting) and listening to our

happy birthday to me... almost

  Let's rewind a bit and start a few days before my birthday... I had my first cancer treatment day on October 3rd - check it out if you haven't read that blog post yet. Let's just think of it as an early birthday gift since my birthday is October 7th. Great gift, right?!? If I have to hear "Happy Early" or "Late Birthday" from another medical person, I might have to smack someone. Especially, since I have spent most of the weeks leading up to and after my birthday at a medical appointment regarding cancer. Not really loving my birthday this year. Let's just say, on my birthday, I woke up with a special chemo-side-effect-surprise at 2am. That fun surprise I will share later... Rewind a Few Days... Update But first, let's go to October 4th, the day after my grueling 8 hours of immunotherapy and two chemotherapies on the 3rd. I woke up swollen, red faced, and fevering, as well as feeling pretty crummy. I didn't have time to dwell on it since I

More biopsies... where? down there?

Cancer survivors are always wondering and waiting to see if something is going to happen, so it is only natural to worry when something is "off". Then when something turns out to be abnormal more testing and follow-ups are needed. It seems like a continual wave of worries. Sometimes our worries turn out to be issues. Sometimes our worries turn out to be nothing. Either way, we are going to worry... it's just an issue of determining how much and when we should really worry. Finding out my endometrium lining was so thick meant I needed to get a biopsy. What's an Endometrial Biopsy? An endometrial biopsy is a medical procedure in which a small piece of tissue from the lining of the uterus (the endometrium) is removed for examination under a microscope. The removed tissue is examined for cancer or any other cell abnormalities.  Lucky me. Right?  Now I get to go back the GYN only a few days after my initial exa