Yesterday at the Conference

Great day!  Where do I start?  Well, next year's conference will be in Philly.  And, it will be in September - Thyroid Cancer Awareness Month.  Certainly October is taken by Breast Cancer - and that brings me to my next subject.  I have met many women here who have dealth with both thyroid cancer and breast cancer.  That's a little scary for me.

Yesterday I learned quite a bit about newer treatments for thyroid cancer and the role of surgery for management of infected lymph nodes in the neck.  I also learned more about ultrasound for management of long term survivors like myself.  Best of all, I met an associate of the doctor I'll see at The Mayo Clinic this coming Wednesday.  I'm pleased to find out that the doctor I'll see is excellent and really knows about hyperparathyroidism and bone loss.  I also met many people who are being treated at Mayo and they all love it up there.

I signed up to be in a focus group, so I'm up early today to get ready for that.  The only session today that I'm really interested in is the one on ethanol ablation fo recurrent thyroid cancer in the neck.  I'll hang around for that one and by Noon hope to be on the road heading home...of course stopping at Caputo's market first for some Italian goodies.

Last night the auction and banquet were wonderful.  I picked up some nice items at the auction.  The wine Bob donated picked up decent funds for ThyCa research.  Everyone was generous and ThyCa raised some needed funds.  We heard from one of the grant recipients - she is a thyroid cancer survivor herself!  I sat at a table with some of the ThyCa volunteers and I'll now be getting involved in the TFN (toll free number) - helping people who call into ThyCa...often newly diagnosed and sometimes people asking about the Low Iodine Diet - certainly my passion.  Also at our table was the husband and the sister of an active volunteer for ThyCa who passed away three months ago from the same form of ThyCa that I have.  The two of them were so inspiring...carrying on their wife's/sister's legacy.  It was diifficult to hear of someone so young who died from this disease.  Yet, it was humbling for me.  She had no lymph node spread, but it skipped to her brain, lungs, pancreas.  I must give a thank you to my own body since my lypmh nodes stopped the cancer in my neck.

It was also interesting to run into so many people facing the same issues I face. I learned that the average weight gain after diagnosis is 40 pounds.  I learned that weight loss is extremely difficult for us since we have no metabolism that fluctuates normally throughout the day.  I also found several other people with tremendous ear pain and tinnitus - or ringing in the ears - as well as vertigo and ear fullness.  We need to band together and demand research!  I also found so many people with muscle aches - myalgia.  There is for sure a Vitamin D connection here...

We all expressed being fed up with hearing "oh, you have the good cancer."  Really?  Cancer is good?  NOT.  We all get frustrated with hearing "well, you don't look sick."  Really?  I thought sick was about how you feel, not about how you look.  One lovely young lady - strikingly beautiful even while carrying some extra weight - talked about nearly dying several times from calcium levels dropping due to the damage done to her parathyroids during surgery.  She doesn't "look" sick.  They had to pump calcium directly into her heart muscle, twice, to stop her from dying.  I'd say she's in her late 20s.  So, no, this is not a good cancer.

I am blessed that my complications are relatively minor.

Gotta get going to get ready for the early morning focus group!