Day Thirteen, Cushing’s Awareness Challenge

Posted on April 13, 2012 by MaryO

This is one of the suggestions from the Cushing’s Awareness Challenge post:

“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”

The “Official mascot” is the zebra.  I wrote about the zebra in this series, Day Six

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.  According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism ”When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”

Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.

I posted this in 2010 in 40 Days of Thankfulness: Days Twenty-Two through Thirty

I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.

Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.

I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.

Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?

Butterflies are something else again.  I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.

My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.

From July, 2008

For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.

One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.

The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.

Hope springs eternal, though!

 

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Day Seven, Cushing’s Awareness Challenge

Posted on April 7, 2012 by MaryO

Sleep.  Naps.  Fatigue.  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 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.

Sleeping in Rockford

This sleeping thing really impacts my life.  Between choir rehearsals, I come home for a 45-minute nap.  Sometimes, during adult choir rehearsals, I start to nod off anyway.

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 5 years out from my kidney cancer 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…

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Day Four, Cushing’s Awareness Challenge

Posted on April 4, 2012 by MaryO

The Seven Dwarves of Cushing's

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here’ are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!

MaryO
         MaryO

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Small cell carcinoma of the vagina causing Cushing’s syndrome by ectopic production and secretion of ACTH

Posted on March 5, 2012 by MaryO

Hope found this interesting info for us:

Small cell carcinoma of the vagina causing Cushing’s syndrome by ectopic production and secretion of ACTH: a case report.

K M Colleran, M R Burge, L A Crooks, R I Dorin

Department of Medicine, Albuquerque VA Medical Center and University of New Mexico School of Medicine, 87108, USA.

BACKGROUND: Small cell carcinomas of pulmonary or extrapulmonary origin are neuroendocrine tumors classically associated with ectopic hormone production, particularly ACTH secretion resulting in Cushing’s syndrome. However, ectopic Cushing’s syndrome has not previously been reported in the setting of small cell carcinoma of the vagina.

METHODS: A primary vaginal tumor with hepatic metastases was evaluated with light microscopy. Serum cortisol and plasma ACTH levels were evaluated by radioimmunoassay and immunoradiometric assay, respectively, during a standard high-dose (8 mg) overnight dexamethasone suppression test.

RESULTS: Vaginal small cell carcinoma with hepatic metastases was demonstrated. Electrolyte abnormalities, elevated cortisol and ACTH levels, and failure to suppress ACTH secretion during high-dose dexamethasone administration confirmed the diagnosis of ectopic ACTH syndrome.

CONCLUSIONS: This case report establishes a clinical association between vaginal small cell carcinoma and ectopic Cushing’s syndrome, confirming the neuroendocrine potential of this malignancy and features common to small cell neoplasms originating in other sites.

More information and citations here: http://lib.bioinfo.pl/pmid:9190988

 

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Cushing’s and Cancer – the Reality of it all

Posted on June 16, 2011 by MaryO

This post is by Judy, a long-time message board member who is in the middle of Cushing’s patients.  Both children and her ex-husband have dealt with Cushing’s.  Judy is a Cushie-Blogger.

She posted this on her blog at http://judcol.blogspot.com/2011/06/okay-im-probably-ready-to-get.html

Okay, I’m probably ready to get politically incorrect here. Oh well.
It seems that at least once a day, sometimes many times a day,I see a post on Facebook that in its short version says a cancer patient has just one wish, that is to live. Repost…….

I have no doubt that is true. I have known several cancer patients & it is a real struggle and sometimes the outcome isn’t good (understatement).

Now here is the *but* & my own little personal rant.

A Cushing’s patient has many wishes.
1. Finding a doctor that believes they can actually be sick, not just fat & depressed (which happen to be symptoms).
2. Having friends & family that thought they were truly sick not just lazy.
3. Having enough energy to make it through the day and not being totally exhausted whether they did or didn’t accomplish something that day.
4.Being able to find an understanding doctor that isn’t halfway across (or clear across) the country. The same can be said of finding surgeons.
5. Wanting their mind to be clear enough that they can keep up with their job & their peers.
6. Wishing their body was physically able to do just some of the simple tasks set before it.
7. Wishing that they didn’t feel like they could throw up most of the day.
8. Praying they can get a nights sleep so they can make it through work the next day. And that they didn’t have so much muscle & bone pain.
9. Wanting their mood swings to go away so they can keep up with their emotions.
10. Praying (literally) that they live long enough to get a diagnosis.

This list could go on & on. The really sad part is that there were times I wished my family had cancer. Getting a dx would of (usually) been so much easier. Cancer doesn’t usually affect every system in the body. If you get a cure from cancer you aren’t usually left with permanent damage to random body systems.

Statistics say that Cushing’s is rare. I know it’s not. As the Cushie community says – it’s just rarely diagnosed. Most people think they don’t know anyone with Cushing’s. Most people would be wrong. They just don’t know a diagnosed Cushing’s patient.

That overweight woman in front of you in the checkout line? The one that has terrible mood swings? She might have Cushing’s. The coworker that suddenly can barely do her job because she is so exhausted and has terrible brain fog? She might also have Cushing’s. You know that girl at school that now has arms so hairy it looks like fur? You know, the one that also smells funky sometimes? Yeah, she probably has Cushing’s. You laugh at her but you know what? This disease doesn’t discriminate. It might be you someday wondering why the weight keeps piling on when you barely have an appetite and work out every day.
As with the list of *wishes* I could go on & on because Cushing’s truly is the disease that keeps on giving & giving & giving. Even after a cure (relative term) it still keeps on giving.

As a wonderful neurosurgeon has said “Cushing’s kills.” It just does it at a very slow, painful pace.

MaryO’Note:

This is fantastic, Judy. Thanks for saying it!

I’ve often seen that stupid FB post and haven’t reposted it.

I am both a Cushing’s and a cancer survivor. For me, the cancer was easier to deal with.

I have been dealing with Cushing’s and the after-effects since the early 1980’s.

All I’m left with after my cancer is a scar and some bad memories.

I think Sarah’s death got lots of us thinking. We’ve seen so many unnecessary Cushing’s deaths and it just breaks my heart.

Judy, may I use this as a guest post on my Cushing’s and Cancer blog? It’s perfect!

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