Survivor Guilt

Posted on April 14, 2015 by MaryO

attot's avatara tale of two tumors

Roughly fourteen months ago, as I flew to Houston for a consult with a surgeon at MD Anderson, I found out another Cushing’s patient had just had her surgery in the same place.  She had the same endocrinologist as me and the same surgeon.  I had been following her case with much interest, as she was a few steps ahead of me in the process and I hoped to get some sense of what was to come for me by following her progress.

I didn’t know much about this patient at this point beside some basic information.  She lived very far from me, she had a family and I knew she had had Cushing’s for a very long time.  She was a regular member on the Cushing’s Help boards that I had recently joined and had lots of advice for us newbies on testing and symptoms.   And now, she was…

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Day Fourteen, Cushing’s Awareness Challenge 2015

Posted on April 14, 2015 by MaryO

In Day 9 on April 9, 2015, I wrote about how we got the Cushing’s colors of blue and yellow.  This post is going to be about the first Cushing’s ribbons.

 

I was on vacation  in September, 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about).

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.

The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral.  When we had our “official ribbons” made, we sent several to Janice’s family.

Janice was the first of us to die but there have been more, way too many more, over the years.  I’ll write a bit more about that on Day 21.

 

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Plan D, Part I: Genetic Testing

Posted on April 13, 2015 by MaryO

After learning I would not be receiving any further help from the oncologist or my PCP figuring out what is going on, I had to move on to my next plan of attack. For a variety of reasons – including the obvious reason that I am very symptomatic and had a suspicious Octreoscan finding from January – there is no way I can just give up. My current plan is to try and gather some more hard evidence and then, with the help of the Wizard, try again with another specialist…

attot's avatara tale of two tumors

After learning I would not be receiving any further help from the oncologist or my PCP figuring out what is going on, I had to move on to my next plan of attack.   For a variety of reasons – including the obvious reason that I am very symptomatic and had a suspicious Octreoscan finding from January – there is no way I can just give up.   My current plan is to try and gather some more hard evidence and then, with the help of the Wizard, try again with another specialist.

I am getting very impatient waiting for the results of the genetic test to come back from the NIH.   If I do have MEN-1, I am most likely a “sporadic” case (i.e., I don’t have a clear family history of MEN-1).   I already know that roughly 40 percent of clinically confirmed sporadic cases do not…

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Mixed Bag

Posted on April 13, 2015 by MaryO

kelly's avatarZebraontheside

Tomorrow I have an appointment with my local endo. This is only the second appointment with him. I have not had two endos for about 10 years. On one hand, it is nice to have a local doctor but on the other, it is a bit awkward. It is hard to build trust with someone that does not have the expertise or reputation of my lead endo. We already have an issue that I will have to address tomorrow. I needed something from a local doctor and asked him. His medical assistant said in a snotty way that he does not “do” Armour and then asked if I would go back to 100 Levoxyl. Well, my medications were changed so I won’t. Hopefully there will be less attitude from him tomorrow.

It is funny because I did not ask for Armour. My primary endo asked me how I felt about…

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Day Thirteen, Cushing’s Awareness Challenge 2015

Posted on April 13, 2015 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!”

Our “Official mascot” is the zebra.

Our Cushie mascot

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.

zebra-mug

A zebra cup my DH bought me 🙂

By 1960, the aphorism was widely known in medical circles.”

Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist!  Cushing’s is too rare – you couldn’t possible have that.  Well… rare means some people get it.  Why couldn’t it be me?

 

 

 

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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