Positively Radiant

Being positive yet realistic is an art I am eager to master.

Chihuly in Mayo Clinic

I knew going into yesterday I was not entering the Mayo Clinic to be cured. I knew I was going to be diagnosed with a blood disorder that has the potential to destroy me from the inside out. To relieve any anxiety, I did research. I learned about all the possibilities of this diagnosis so I wouldn’t walk out of the Mayo Clinic blindsided. I also decided to use my new found education of Mastocytosis to alter my attitude and in hopes to manipulate my destiny. I mean, I am fully aware I have no control of the end result, but IF I could sway the decision in any way, this was my chance.  If you know me at all, you know I never miss an opportunity to deliver my two cents.

And it worked.

I woke up for my 9:30 appointment at 6. I had all my notes, my questions, my history written out in a notebook my boss gave me for this very trip. I arrived at the Mayo campus an hour early to fill out paperwork that I knew would be the size of a novel. They gladly accepted my early arrival and handed me Mastocytosis forms.   I got one page in and they called my name. I couldn’t believe it. Paul, the clinical services concierge, chatted with us, took my vitals and was kind enough to tell us where to grab lunch. He said the doctor would be right in, and his words rang true.

In walked a younger doctor with fresh salt and pepper hair. Dr. P. introduced himself and gave me the run down. We were here to verify the diagnosis and move forward with treatment, but first he wanted to hear all about me. I thought about starting with, “It was a cold December day in Kansas,…” however I spared him the detail. I jumped right to the last 12 years focusing really on the last 5. It was strange talking about myself so much. So much so I almost interjected with a personal question directed at him. “So, where ya from? Boxers or briefs? Again, I didn’t. I showed him photos how a breakout affects my skin, I let him make the lesions on my skin “angry” and I listened to what he thought we should do.

After about 2 hours of being in the examination room, it was determined that I was, in fact, experiencing the best case scenario.

11.)   He said he didn’t insist that I have a bone marrow biopsy. In the end, it wouldn’t affect the way I was being treated; it would only determine a baseline. Other tests could help us obtain baseline information.  I told him I was willing to do it if it helped the next guy battling this same disease. His reply was sincere. He said he appreciated that I wanted to help the science of it all but I need to think about what is best for me, and if that helps someone along the way, than it does. In the end, we decided to pass on the painful, hipbone-puncturing-needle procedure. What can I say, I am kind of a sissy.

22.)   On a scale from 1 to 10, I am at a 1. This disease is considered indolent, which means lazy. It will be annoying and it will be a nuisance.

33.)   The research they have thus far shows the cardiomyopathy was not caused by this disease. Interesting. 

44.)   There are currently only 500 patients to date (from the start up of Mayo Clinic) to have come in with Mastocytosis. I always knew I was special.

55.)   Doc P. said my case was mild and if I can maintain the state I am in, I am looking at a normal life span. 

Take that you jerky disease.

The doctor walked me to the waiting room, and handed me a script for not one, but two, Epi-Pens. Because, one bad reaction could wash all the good right under the table, I get to carry around the pens and teach those around me to use them, just in case. With bullets in the chamber, I was told I needed to come back in September to meet with the allergist. Treatment would consist of a daily dose of a type 1 & 2 antihistamine. He gave me his card and we headed to lunch at Chester’s – the amazing restaurant my new friend, Paul, recommended. If you are reading this, Paul, thank you! It was beyond delicious. (Check it out on your next Rochester vacation!)

Grinning ear to ear, KP and I hurried to pack our bags and check out of the Doubletree. Less than 24 hours after arriving, we departed Rochester and the Mayo Campus.

Two days ahead of schedule, we arrived in Kansas City to spend the holiday with a handsome 2 year old; the same little boy who unknowingly encourages me to be positive on a daily basis.  One day, once Hutch starts reading his mother’s very public diary of a blog, I hope he takes away this one rule: Educate yourself so you are not caught off guard and always disregard naysayers – a positive attitude is key to finding your own best case scenario. 

Oh, and also: Life is like pizza, even when it is bad, it is still good.

In your face, Mastocytosis. (Sorry, I can get a little competitive with myself.)

Finally - I want to thank you all. Those who read this blog. Those who emailed, called, texted, FB'd. Those who hugged me. Those who listened to me when I needed an ear. Those who have and continue to pray and send love. Those who lend a sweet word and told me they love me. Those who vow to stand by me during this journey. Thank you with every ounce of my being. Right now, if you feel your chest squeeze just a little, that is me giving you big bear hug.

With love from my family to yours. XOXO Tabbie

For more about Mastocytosis, please go here: http://www.mayoclinic.org/systemic-mastocytosis/