Plan D, Part II: Get a Better Look Inside

attot's avatara tale of two tumors

I am in a bit of a rush today, so this post will be brief.  The second part of my current plan is to try and gather more evidence in terms of imaging.  The Octreoscan I had at the NIH did show an area suspicious for a neuroendocrine tumor (NET) in the anterior mediastinum.  There is some uncertainty about whether the corresponding CT scan of my thymus is normal or not.  Since I feel horrible and thymic NETs tend to be very aggressive in MEN-1 (if that is what I have), I don’t want to just sit and wait to see if there is something there and it spreads/grows.  It doesn’t sound pleasant and it doesn’t sound smart.

You might be asking yourself at this point:  if you really do have a tumor and it is really making you that sick, how can it be that hard to find?  The…

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Day Fifteen, Cushing’s Awareness Challenge 2015

Way back when we first got married, my husband thought we might have a lot of kids.  He was from a family of 6 siblings, so that’s what he was accustomed to.  I am on only child so I wasn’t sure about having so many.

I needn’t have worried.

In January, 1974 I had a miscarriage.  I was devastated. My father revealed that my mother had also had a miscarriage.  I had no idea.

At some point after this I tried fertility drugs.  Clomid and another drug.  One or both drugs made me very angry/depressed/bitchy (one dwarf I left off the image)  Little did I know that these meds were a waste of time.

Eventually,  I did get pregnant and my wonderful son, Michael was born.  It wasn’t until he was seven that I was finally, actually diagnosed with Cushing’s.

When I had my early Cushing’s symptoms, I thought I was pregnant again but it was not to be.

I’ll never forget the fall when he was in second grade.  He was leaving for school and I said good bye to him.  I knew I was going into NIH that day for at least 6 weeks and my future was very iffy.  The night before, I had signed my will – just in case.  He just turned and headed off with his friends…and I felt a little betrayed.

Michael wrote this paper on Cushing’s when he was in the 7th grade. From the quality of the pages, he typed this on typing paper – no computers yet!

Click on each page to enlarge.

When Michael started having headache issues in middle school, I had him tested for Cushing’s.  I had no idea yet if it could be familial but I wasn’t taking any chances.  It turned out that my father had also had some unnamed endocrine issues.  Hmmm…

I survived my time and surgery at NIH and Michael grew up to be a wonderful young man, if an only child.  🙂

After I survived kidney cancer (Day Twelve, Cushing’s Awareness Challenge 2015) Michael and I went zip-lining – a goal of mine after surviving that surgery.  This was taken in a treetop restaurant in Belize.

For the mathematically inclined, this is his blog.  Xor’s Hammer.  I understand none of it.  He also has a page of Math and Music, which I also don’t understand.

Survivor Guilt

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

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.

 

Plan D, Part I: Genetic Testing

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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