Day Fifteen, Cushing’s Awareness Challenge

Posted on April 15, 2012 by MaryO

Because it’s a Sunday again, this is a semi-religious post…

After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

I thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever.

This verse has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. On my birthday, there was “my” psalm so I had to buy this book!

Psalm 116 (New International Version)

1 I love the LORD, for he heard my voice;
he heard my cry for mercy.

2 Because he turned his ear to me,
I will call on him as long as I live.

3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.

4 Then I called on the name of the LORD:
“O LORD, save me!”

5 The LORD is gracious and righteous;
our God is full of compassion.

6 The LORD protects the simplehearted;
when I was in great need, he saved me.

7 Be at rest once more, O my soul,
for the LORD has been good to you.

8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,

9 that I may walk before the LORD
in the land of the living.

10 I believed; therefore I said,
“I am greatly afflicted.”

11 And in my dismay I said,
“All men are liars.”

12 How can I repay the LORD
for all his goodness to me?

13 I will lift up the cup of salvation
and call on the name of the LORD.

14 I will fulfill my vows to the LORD
in the presence of all his people.

15 Precious in the sight of the LORD
is the death of his saints.

16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.

17 I will sacrifice a thank offering to you
and call on the name of the LORD.

18 I will fulfill my vows to the LORD
in the presence of all his people,

19 in the courts of the house of the LORD—
in your midst, O Jerusalem.
Praise the LORD.

 

I carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver.

On the other side there is an article I found after my kidney cancer.  You can read that article in Day Twenty-nine, coming up on April 29, 2012.  Plan Ahead!

Filed under: Cushing's, Inspiration, Thankfulness | Tagged: , , , , , , , | 3 Comments »

Counting Today There Are Only Six Days Left…

Posted on April 14, 2012 by MaryO

…To support Cushing’s patients by only clicking a link. Click here to make a difference!

Feel free to share the link around, click more than once, post to Twitter, LinkedIn and Facebook.  Every click is worth $5.00 to Cushing’s organizations which support patients.

Thank you for your support!

[[posterous-content:uxBbAywggBfgrJAemDjD]]

 

Support Cushing’s …With A Click.

From Corcept, the makers of Korlym:

Corcept Therapeutics will donate $5 for every person who clicks to support people with Cushing’s. Corcept has jump-started the effort to build awareness and support with a $15,000 contribution to provide support through the Cushing’s Support and Research Foundation and Cushing’s Help.

With your support, we can aim even higher!*

Take part…and spread the word.

*Donations up to $30,000. Program ends April 20, 2012

Click here to make a difference!

 

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Day Fourteen, Cushing’s Awareness Challenge

Posted on April 14, 2012 by MaryO

And today, we talk about pink jeeps and ziplines…

How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because in Day Twelve I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL

 

I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006.  I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006.  My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.

 

I got out of the hospital on the day that they left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.

An especially amusing thread from that cruise is The Adventures of Penelopee Cruise.  Someone had brought a UFC jug and  decorated her and had her pose around the ship.  The beginning text reads:

Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!

Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.

On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?

Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August, 2006.  I convinced everyone that I was well enough to go off-road in a pink jeep,  DH wanted to report me to my surgeon but I survived without to much pain and posed for the header image.

In 2009, I figured I have “extra years” since I survived the cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldn’t go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.

Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.

We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldn’t get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didn’t have cave pictures or T-Shirts. What a missed opportunity!

This was so cool, so much fun. I thought I might be afraid at first but I wasn’t. I just followed instructions and went.

Sometimes they told us to break. We did that with the right hand, which was always on the upper cable.

After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldn’t figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.

After that, no more problems with breaking!

The next platform was very high – over 70 feet in the air – and the climb up was difficult. It was very hot and the rocks were very uneven. I don’t know that I would have gotten to the next platform if Michael hadn’t cheered me on all the way.

We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.

But, I did it! No fear, just fun.

Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!

 

Filed under: Cancer, Cushing's, growth hormone | Tagged: , , , , , , , , , | Leave a comment »

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!

 

Filed under: Cancer, Cushing's | Tagged: , , , , , | Leave a comment »

Day Twelve, Cushing’s Awareness Challenge

Posted on April 12, 2012 by MaryO

Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.

I alluded to this in Day Nine when I said:

I finally started the Growth Hormone December 7, 2004.
Was the hassle and 3 year wait worth it?
Stay tuned for Day 12, April 12, 2012 when all will be revealed.

So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004.  I took it for a while but never really felt any better, no more energy, no weight loss.  Sigh.

April 14 2006 I went back to the endo and found out that the argenine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.

So, I went off GH again for 2 weeks, then was retested. The “good news” was that the argenine test is only 90 minutes now instead of 3 hours.

Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go home after the test.

Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.

When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and became my new doctor.

They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.

My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.

My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.

I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.

So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.

My five years are up now.  My kidney surgeon *thinks* it would be ok to try the growth hormone again.  I’m still a little leery about this, especially where I didn’t notice that much improvement.

What to do?

 

Filed under: adrenal, Cushing's, growth hormone | Tagged: , , , , , , | 2 Comments »

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