It’s not over until the fat lady sings…and she ain’t singing yet

a tale of two tumors

After my disappointing appointment yesterday, I had the following exchange with my PCP via email, below.  It just made me feel hopeless.   I know she thinks I need exercise and anti-depressants and Prilosec – she has suggested all three to me before.  NO AMOUNT OF PROZAC AND PRILOSEC CAN FIX A TUMOR.  It boggles my mind that she honestly thinks this crap is going to solve my problems.  But it is good to know where I stand with her so that I can plan according.

Thankfully, I generally respond well to negative reinforcement 🙂  I was down last night, but I woke up mad as hell and more determined than ever to figure this shit out.  The fact that my PCP doesn’t think there is any “major diagnosis” coming my way was just the smack I needed to get my motivation back.   Just because she (and the others…

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The Voices of Cushing’s Disease, Part II: A Day in the Life

Part II of The Voices of Cushing’s Disease video series discusses the daily challenges of people living with Cushing’s disease and highlights the importance of disease management.

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Day 7: Cushing’s Awareness Challenge 2015

Sleep.  Naps.  Fatigue, Exhaustion.  I still have them all.  I wrote on my bio in 1987 after my pituitary surgery “I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.

That seems to be changing back, at least on the weekends.  Last weekend, both days, I took 7-hour naps each day and I still woke up tired. That’s awfully close to taking a whole day off to sleep again.

In 2006, I flew to Chicago, IL for a Cushing’s weekend in Rockford.  Someone else drove us to Lake Geneva, Wisconsin for the day.  Too much travel, too Cushie, whatever, I was too tired to stay awake.  I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead.  Amazing that I traveled that whole distance – and missed the main event 😦


Sleeping in Rockford


This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third one because I fell asleep.

I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.

Maybe now that I’m more than 8 years out from my kidney cancer (May 9, 2006) I can go back on Growth Hormone again.  My surgeon says he “thinks” it’s ok.  I’m sort of afraid to ask my endo about it, though.  I want to feel better and get the benefits of the GH again but I dont want any type of cancer again and I certainly can’t afford to lose another kidney.

I’m feeling so old and weary today, and yesterday.  And tomorrow…


Pituitary Tumor Roundtable – Part One: A Focus on Diagnosis

Novartis is committed to supporting the pituitary community and continues to address the evolving needs of patients and caregivers.

In this video, a multidisciplinary panel discusses the diagnosis of acromegaly and Cushing’s disease.

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Baa Baa Black Sheep and Easter

When I was driving, I noticed that I don’t even notice some of the pain that is becoming my norm. In many ways, it is nice. For those of you wondering if it is worth it, YES! This is what you go through treatment in order to experience. Fight!

via Baa Baa Black Sheep and Easter.

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