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In Memory of Stacy Ollenberger ~ November 4, 2015

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stacy-o-memory

 

Stacy’s sister posted on Facebook:
This is my beautiful sister Stacy she was diagnosed with cushings disease in 2005 at the age of 19 she had two pituitary surgeries radiation and finally an adrenalectomy we watched her suffer struggle and fight this disease for ten years there were countless Dr visits and pills she had to take daily until she passed away in her home on November 4 2015 at the age of 30 we miss her so much she has left a hole in our hearts but we will continue to bring awareness to this horrible disease hoping we can save someone’s life…

…Thank you so much for sharing this I think she struggled with the stigma of the disease she was doing so much better but she passed suddenly of adrenal crisis we were shocked we truly believed that she had this beat I know this group was so special to her she even added me to it I think to help me understand what she was going through you are all incredible amazing people to have the strength to battle through this everyday.

From Stacy’s blog:

Monday, April 27, 2009

Ambers Paper

My friend Amber is currently in school (taking Journalism I believe). She started reading my blog and had to write a paper for one of her classes, she asked me if it would be okay for her to write one about Cushing’s Disease and use my blog and/or me for information. I agreed. Amber found out quickly how hard it is to find useful information about Cushing’s Disease in Humans. Alot of sites are geared towards dogs and horses. She agree with the rest of us that it is retarded that there isn’t more information so that people could at least become more informed about this disease. Anyways this is a copy of what she submitted:

Living with Cushing’s disease
By, Amber Yake

When Stacy Ollenberger was 19 years old she began gaining weight at a rapid pace regardless of her healthy lifestyle, when she went to the doctor she was called a liar and told she was just getting fat.

“I saw six doctors before I was diagnosed,” Ollenberger said. “Doctors told me it was just weight gain and I had to change my diet and exercise.”

After seeing five doctors in two different cities, she finally saw a doctor who realized something was wrong with her. He suspected she had Cushing’s disease and referred her to a specialist in Edmonton.

“Finally I saw another doctor and he knew something was wrong. He didn’t know what so he did a bunch of tests and found out that I had extremely high cortisol levels,” Ollenberger said. “He had seen Cushing’s once before and suspected that is what I had but wasn’t a specialist so he referred me to Edmonton.”

According to Ollenberger, an excessive secretion of ACTH, which is produced by a pituitary tumour, causes Cushing’s disease. The ACTH then triggers your adrenal glands to produce excess amounts of cortisol. Symptoms include upper body obesity, round full face, increased fat around the neck, and thinning of arms and legs among other things.

Ollenberger showed all of these symptoms, however; since Cushing’s disease is so rare, none of the doctors she saw thought that is what she had.

“The specialists in Edmonton did not want to see me because they said Cushing’s disease is rare and they said that there was no way I had it,” she said. “They had all my blood work and stuff, my cortisol was more than 6 times higher than that of a “normal” person, and they told us that the tests were wrong and needed to be redone.”

Ollenberger was finally seen by specialists in Edmonton, AB and has since had two brain surgeries in attempts to remove the tumour on her pituitary gland increase. She feels angry at the medical system for not diagnosing her symptoms sooner.

“If I were diagnosed sooner the symptoms of my disease probably would not have gotten so bad and I probably would not have had to go through everything that I have had to—two surgeries, radiation and now I have to get my adrenal glands removed,” she said.

“I mean my family doctor made me feel like I was just a fat slob who didn’t eat right or exercise. He had been my doctor for years, and for me to gain so much weight so fast he should have known something was medically wrong.”

The doctors were unable to completely remove Ollenberger’s tumour. It’s not shrinking or growing. It is not an option to remove more of the tumour so her next option is to get her adrenal glands removed.

According to Ollenberger, this will make her body not be able to produce any more cortisol. Because you need cortisol to survive, after her surgery she will have to start medication to replace the cortisol that her body needs to survive.

“I will be on medication for the rest of my life,” she said.

Ollenberger is also working with her cousin to create a Cushing’s Awareness day in Canada. She wants to educate people so no one has to experience the things she has.

“It only takes one person to educate many and that is what I would like to do, bring awareness to this disease so others do not have to go through what I had to” she said.

 
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In Memory: Barbara “Cookie” Rothenberg ~ Oct 11, 2003

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Saturday, Oct 11, 2003

The One and Only Cookie, photo taken by Erin
Columbus CUSH meeting, Saturday, October 26, 2002

From the posts on the message boards:

My heartfelt prayers and sympathy goes out to Cookie’s family, I never really had gotten to know Cookie Like many of you, but during a few chats, I saw how she helped many, answering questions, ect… and always willing to help out. My heart is sad to hear of her passing.


What I learned from Cookie was that she loved people and wanted to make a difference in the lives of those who suffer from Cushing’s. She touched many hearts, I know she touched mine….


Cookie was an inspiration to many of us. She gave her all for Cushing’s awareness, and I will always remember that the last time I saw her, she was singing…
Shalom, my friend.


Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

We’ll miss you so much, Sweetie.


I was lucky to have gotten to meet Cookie. She is such a fun person and she could always cheer you up.


Cookie, gees, what can you say. She was dynamic, committed, determined, exasperating, poetic, driven, electric, comedic, funny, supportive, strong, loving, loved, and not to repeat, but a driving force in creating CUSH and helping those who needed it. She was wonderful with fundraising. She was involved in so many activies that were for the benefit of others. She has dealt with many challenges in her life and continued to passed the point that many could not.

She will be sorely missed by all who knew and knew of her.


She was just an incredible, delightful person. I really think this world is a little dimmer today without her light from within. I know a lot of us are missing her already. I remember talking to her about the upcoming conference and her enthuisiasm was contagious. I’m just so very, very sorry to hear she’s passed. I hope her next life is one without pain, where she can sing and write poems to her heart’s content. Cooke will be sorely missed.


My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!


Cookie touched a lot of lives. I remember back on the “old board”–before any of us had met any of the others in real life–I would get these perky, cheerful and witty emails from Cookie. She had a signature that was some kind of rhyme including “Lookie, lookie,…Cookie.” Her little dollop of cheer in my “inbox” always made me smile.

It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come.


I think this fits Cookie perfectly:

Some People …
Some people come into our lives and quickly go
Some people move our souls to dance
They awaken us to new understanding
With the passing whisper of their wisdom
Some people make the sky more beautiful
To gaze upon
They stay in our lives for a while
Leave footprints in our hearts …
And we are never the same

— Anonymous

~~~

Cookie shared this poem  to show how she felt…

It was an awful state that I was in
Hair was growing on my chin
My moods were swinging from low to high
All I did was cry “let me die!”

The hair kept growing down my neck, chest and bod
Would some dr not think this was a little odd
Sometimes I was up day after day
Then I’d want to sleep all the time to chase my troubles away

Rather I’d eat nothing, something, or very little at all
It seemed getting fatter and fatter was my call
I had every symptom of menopause
Too young they said, it’s in your head, there is no cause

I sing so when I said “I have another octave that is below”
They said pack your bags, to the loony bin you go
My periods were off the dr’s. were lazy
After running tests they said I was crazy

Nine years passed, symptoms got worse and I got fatter
My arms and legs were thin, please help me, what’s the matter
I was beginning to think maybe they are right
Maybe I am just a wee bit up tight

But my husband would say find another dr. it has to be
You are not the girl who married me.
Our children were afraid to them I was so mean
I’d see myself doing and yelling and to myself I would scream
“What is wrong with you! stop it” as if I was in a bad dream

Then I went to a dermatologist for a rash I had
He took a look and and asked “What else to you is bad”
I poured out my heart, I cried and I said
I can’t take any more, I wish I was dead

He asked who I had seen and I gave him the list
And I could see on his face, he really was pissed
He got me to the Cleveland Clinic and the best dr. there
Who listened to me, and checked out the arms, legs and hair

The mood swings, personality changes, the ups and the downs
Voice lower and periods, and face and body so round
One thing he did was run the same tests
Over and over as the results were not the best

Nothing was the same result and so he knew
Surgery was what they had to do
Something is very wrong in my body he said
Let us take a look now or you will be dead

We think you have Cushing’s Syndrome or Nelson’s Syndrome, too
But we will do our best to help you
Let us open you up and we will explore
Then we will know rather we do less or more

As it turned out the x-rays did not know
What they would see and how much would have to go
My female organs had tumors, fibroids and all
They called this syndrome Stein-Leventhal

A complete hysterectomy is what was done
How I had children not one of them knew, not one
Upon seeing that problem to the adrenals they flew
And things were so bad they removed two

The adrenals, 13 times their normal size and had twisted so
On the x-ray they looked fine, but they both had to go
After that they knew and to me they said
There is a pituitary tumor in your head

But until it grows there is nothing we will do
And 15 years later is when it grew
By then CAT scans and MRI’s were everywhere
So even I could see the tumor there

And no more cutting open the persons head
Up the nose they went instead
Well here we go again, lucky me
The tumor was wrapped around an artery

We can’t take it all out but we will do our best and try
If we sever the artery, you will die
5 years later I was back and then
They took the tumor out again

I opted for radiation to kill my friend in my head
I got tired of the Cleveland Clinic saving me a bed
I had other surgeries and emotional problems but day by day
I was going back to the female way

You see I was very slowly turning into a male but how
Will I be come a women now
The next 8 years were very bad
Almost worse than the first 9 years had

I lost some weight, most of the hair went away
With Nelson’s Syndrome some of the Cushing would stay
I woke up one day and the sun was shining
I was no longer bitching, no longer crying

I was almost me except for the pounds
And the thin arms and legs and the body so round
I was accepting me my life was changing
All I needed was a little more rearranging

I was out in public, I was acting and singing again
Working, volunteering, how did this happen, when!
I still get little bouts of depression but then
I know why, I’m not scared, I feel them coming and when

So hang in there and I promise you
You’ll be doing the things you used to do
Maybe a little slower, maybe not as long
Things will brighten up, I know I am not wrong

Keep on looking the right doctor is there
I know what you are going through, I really do care
I am here for anyone to help with what I can do
We all are rooting and praying for you.

 

1955 and 1962 [Photographer: Cookie’s family]

1980-81, 3 years old, 2000 [Photographer: Cookie’s family]

2000 and 1998 [Photographer: Cookie’s family]

 

From the message boards thread about Cookie:

When Sue left a message on my answering machine this afternoon (October 11, 2003), I knew that something was terribly wrong. It never occurred to me that it could Cookie, our Cookie. Always so positive, cheery, full of life. Even though she was as sick as she was, again, I really thought that she’d pull through, one more time. How could she not? She’d survived pituitary surgeries way back, adrenal surgery, Nelson’s, Cushing’s, more than any one person should have to endure.

Throughout her too-short life, she’s been far too sick, yet she’s carried it all off with grace and enthusiasm.

First diagnosed with PCOS, Cookie had an hysterectomy years ago. During the hysterectomy, they realized that her adrenal glands were greatly enlarged. Cookie had Cushing’s disease and in 1974, Cookie had her adrenal glands removed, in 1989 she had her first pituitary surgery and in 1994 her pituitary was removed completely. Then radiation. Since these are the major glands that run the body, she has been on major hormone replacement for a long, long time, pills and daily injections. Because she had both adrenals and pituitary gland removed, she was also saddled with Nelson’s syndrome…and more medications. Because of her Cushing’s experiences, she helped to found the international CUSH organization to promote awareness of Cushing’s disease/syndrome and served as it’s treasurer and fundraiser.

In November, 2002 she had surgery for E.Coli in her sinuses, of all places (she told the doctor that she wasn’t snorting hamburg!) and in December she had a pacemaker put in.

In Feb, 2003 Cookie suffered a Code Blue. Her heart stopped and she stopped breathing. There were 15 people working on her to bring her back. She couldn’t feel her feet, then her hands were cold, then every little thing imaginable was happening with her. Then cardiac care, a heart attack. Cookie went on permanent dialysis. Her hands suffered permanent damage, Raynaud’s Disease. Her fingers turned purple and she had to wear white gloves all the time. She was bleeding internally again and her platelets were down.

I talked to Cookie after this last assault on her body and she was as cheery as ever. She wasn’t really ready to go home, but she walked 60 feet at the nursing home in several tries and if she could walk a total of 60 feet then her insurance would pay any longer. Her dialysis times were terrible. Tu, Th and Sa 8-11 PM. But her main complaint was that she couldn’t go out of state to be at the birth of a new grandchild.

Then the recent surgery to install a dialysis shunt, infections, complications…

How much can one woman take? No wonder she was tired of it all 😦

No matter how sick she was, she was always ready with a joke, a little song. On the recorder where people leave messages for the toll-free number, Cookie left a message May 17, 2002. I’ve always left it in the answering machine, so I could get a lift by hearing Cookie sing one of her inimitable parodies. If you’d like to listen, you can hear Cookie singing and laughing, one more time [file is missing – I’ll try to find it again].

I just cannot believe this. I truly thought of Cookie as a wonder woman who could do it all, and she could pull through this, too.

I guess she got tired of dealing with illness after illness, medications, surgeries, injections, dialysis, everything. I know I get tired just thinking about dealing with any one of these. Cookie put up a very valiant front through everything. She did more to get the word out than almost anyone I know.

Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

Many thanks to Erin for this last look…


We’ll miss you so much, Sweetie.

In Memory of Bettye Jean Douglas ~ September 28, 2016

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Born:  March 30, 1938

Passed:  September 28, 2016

Bettye Jean Douglas, age 78 of Smyrna, Tennessee, died Wednesday, September 28, 2016 at her home. She was a native of Hickman County, Tennessee, and was preceded in death by her first husband Carl Jenkins, and parents James McKinley and Susie Louise Lampley Wright, and siblings, Marie Wright, Pat Nichols, Nellie Tidwell, and Jessie Wright. Mrs. Douglas was a member of Rural Hill Church of Christ and had worked at Ingram Books.

She is survived by her husband, of 23 years, Wendell Douglas; children, Christopher Jenkins and wife Gina of Murfreesboro, Charmaine Herron and husband Steve of Mt. Juliet; step-children; Danna Douglas of Whites Creek, Wendy Morales of Whites Creek, and Kellye Douglas of Whites Creek; grandchildren, Isabella, Matt, Ben, Chip, Gino, Kendell, Jonathon, Michael; great- grandchildren, Steven, Bently, Austin, Gavin, Taylor, Gracie; brother, Billy Ray Wright of Kentucky.

Bettye’s funeral service was held at 10:00AM Saturday, October 1st, 2016 at Woodfin Chapel, Smyrna, Tennessee. Brother Gary Hale officiated. A graveside service followed at 2:00PM Saturday at Five Points Church of Christ Cemetery in Bon Aqua, Tennessee.

Born March 30, 1938, Bettye was tall and thin all of her life, and as beautiful on the inside as on the outside.  Bettye was a beautiful Christian woman.  She loved to laugh and loved a good joke.  She was all about her family and loved family gatherings.  She also loved to travel.  Her favorite vacation destination was Hawaii.

Bettye had two best friends, other than her beloved husband. Gina, her daughter-in-law, and Charmaine Herron, her daughter.  Her daughter Charmaine joked that they were a mix between Charlie’s Angels and The Three Stooges.  No matter what they were like, they had a lot of fun together.

More than anything or anyone, Bettye loved her Lord Jesus Christ.  Bettye passed away due to complications of Cushing’s disease.  Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym.  Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after.

Most cannot find the words to describe what Bettye went through during her last months on Earth.   To those left behind, the pain is almost unbearable, but those that loved Bettye find comfort in the knowledge that her health nightmare is over and that Jesus has her now and forevermore.

Credit to Woodfin Chapel and Charmaine Herron

In Memory of Cassandra Dills-Dailey ~ August 29, 2017

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Casey Dailey, age 38, was fighting Cushing’s disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn’t stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive.

In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.

Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.

But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.

Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.

“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”

Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.

“You don’t understand. She’s dying,” Wayne Dailey recalls saying.

Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.

“They came to the house and they got her in that boat,” Zavertnik said.

The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.

“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”

The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.

Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.

She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.

“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”

Adapted from http://m.chron.com/about/article/Mother-of-2-dies-in-Harvey-during-medical-12175042.php#photo-14053540

In Memory of Kalyn Allen, June 28, 2017

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We lost another Cushie sister today. Kalyn Allen’s husband posted this on Facebook:

This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.

Yesterday he posted:

Kalyn is in critical condition in the CV-ICU at St. John’s in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.

Kalyn’s story from https://www.youcaring.com/kalynallen-786017:

My name is Kalyn I am 41 years old. I am married and have three children. In Nov ‘16 I was diagnosed with Cushing’s Disease.

My journey began in June ‘16 when I attended a health screening provided by my employer. It was discovered that my blood pressure was dangerously high and I was sent to my physician. I was prescribed blood pressure medicine. A couple of weeks later I joined a wellness program to turn around my exercise and eating habits in hopes that it would help me lose weight and lower my blood pressure.

Over the next few months I was seen by my physician numerous times. I was beginning to have strange symptoms. I was easily bruising. Dark purple stretch marks started to appear out of nowhere. I had hair loss on my head but excessive hair growth on my face. My ankles and hands swelled along with a loss of muscle mass in my legs, horrible acne and a shortness of breath. While my physician tried several different medications they were not alleviating my symptoms. At this point I was having trouble getting in and out of my car and the shower. I also started seeing a therapist because the excess hormones in my system were causing uncontrollable mood swings. During this time I was exercising and following the wellness program losing 52 pounds from June until the end of Oct. But there were still issues controlling my blood pressure. It was at this point that my physician referred me to an endocrinologist.

The endocrinologist ordered a multitude of tests to measure my cortisol levels as Cushing’s disease was suspected. To be thorough an MRI was ordered of my brain to see if they could find a tumor on my pituitary gland. This was done at the end of Dec. It was discovered that I had a 3.7 millimeter tumor on my pituitary gland. From there I was referred to a brain surgeon.

My condition continues to deteriorate as I am experiencing extreme fatigue, intense muscle and joint pain while having excruciating headaches almost everyday. Among other agonizing symptoms that complicate the situation.

I now have surgery scheduled for the first week of May ’17 to remove the tumor. I will be in the hospital for 3-7 days and my recovery time will be from 6-8 weeks. I will have to travel hours away to have the surgery and remain there during my stay in the hospital. My parents will be by my side during surgery. But unfortunately my children and husband will not be able to accompany me due to the expense and not being able to leave our farm animals unattended for that long.

During this time away from work I will be on short term disability. My employers short term disability plan only covers 80% of my wages during this time. This will result in my family undergoing a financial hardship as my husband and parents undertake the task of my care during recovery and attempting to cover the missing 20% plus extra expenses such as medicines and doctors appointments.

I am asking for your compassion and support to help my family and I through these trying times. This journey has been a roller coaster of emotions and physical pain for myself and my family. My Mother has been such a rock for me listening to me complain and cry. My Father has also been there for me always willing to talk and making me smile and laugh even if I didn’t feel like it. My Husband has taken over so much responsibility that was mine. And my children are always willing to help me out with the little things. It is frustrating going from being very active and able to do so many things I love to now only being able to go into the office to work several days a week and the rest of the week working from home doing little else because of the pain and the fatigue. I just want to get back to normal.

Update 5/3/17:

Kalyn’s surgery was very successful and the doctors said they where able to see and remove the tumor only taking 40% of her pituitary gland. She is in recovery now and will be in the hospital for the remainder of the week. She would like to thank everyone for their continuing support over the next few months while she recovers.

Update 5/4/17:

We got some bad news today. After removing the tumor along with 40% of Kalyn’s pituitary gland, her cortisol levels are still high, meaning there is still something else causing her cushings. So we are back to square one. Now we wait to see what the surgeons and the endocrinologists came up with. She is still in a lot of pain and exhausted because it is hard to sleep with all the packing in her sinuses. With this news she will probably have to stay in the hospital longer and may have to have another surgery to remove the rest of her pituitary if they can’t find anything else. The Dr’s may order a PET/CT scan to look other places for tumors but that may take up to 48 hours to get access to the machine.

Update 5/8/17:

Kalyn went in for a PET/CT scan this morning at 6:45 to look for any other tumors or cancer that could be causing the Cushing’s disease. Baring the scan finding anything, later this week the surgical team will go back in and remove the remainder of her pituitary gland. This will result in her being required to be on several medications the rest of her life. While removing the pituitary should solve the Cushing’s it opens the door to increased risk of complications and additional heath problems in the future. She will have to stay in the hospital much longer then anticipated and may have a longer recovery time. The children and husband where able go to OKC on Saturday to visited with her in ICU. This was the first time we have been able to see here in a week besides video chats. They spent several hours together and everyone enjoyed the short time with mom. Thank you Bob Eden for driving the family to OKC and for the pizza lunch everyone enjoyed. Kalyn remains optimistic and in high spirits considering the circumstances. She enjoys and appreciates all the kind words and support she has received though this difficult ordeal. The results of the PET/CT scan should come back quickly and we hope to not have to deliver any more bad news. This ordeal has been very stressful for her and the family and we are hoping for a favorable resolution soon. Kalyn and the family thank you for your continuing support and donations.

Update 6/26/17:

Kalyn is in critical condition in the CV-ICU at (hospital ommited) in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go.Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and husband are having to make daily trips into Tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.

In Memory of Samantha Cohn ~ June 19, 2014

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in-memory

A Pilates instructor who suffered from a rare disease leaped to her death Thursday from her Upper West Side apartment — nearly crushing a horrified passer-by on the street, cops said.

Juilliard graduate Samantha Cohn, 34, crawled out a window in her 16th-floor apartment at West 71st Street and Broadway and jumped at 10:10 a.m.

Cohn, who was wearing workout clothes, landed on the sidewalk on Broadway and nearly hit a neighbor, Matt ­Kovary.

Her mother told investigators she had been diagnosed with Cushing’s syndrome, police sources said.

Cushing’s syndrome is a disease caused by exposure to high levels of cortisol. A tumor grows in the pituitary gland and causes serious side effects.

“I thank God for sparing me because I would be dead, too,” said Kovary, 59, who was on his way to the Upper West Side Copy Center on Broadway. “I heard a loud explosion. It was right behind me.

“I turned to see what the explosion was. The sight was so horrific. She was just at my feet. She almost took me with her.”

Stunned, Kovary headed to church after the tragic incident and prayed for the pretty victim.

“I’m so shaken from it. I went to church twice and prayed to God to save her soul. I could have been dead, killed an hour ago,” he said.

Cohn had gone missing for a week in April, prompting her worried mother to search for her and alert authorities, said a worker at her building.

“They found her in the hospital, supposedly for heat exhaustion,” said a doorman, Jacques Tassy. “When she came back [home], she seemed different. She wasn’t smiling as much.”

A woman who had been checking on Cohn regularly showed up on Thursday — 30 minutes after she had jumped.

“It wasn’t Samantha Cohn, was it?” the woman wailed. When she found out it was, she burst into tears.

The beautiful brunette spent more than 10 years as a professional dancer before teaching Pilates at Back in the Game Therapy near Rockefeller Center, according to the center’s website.

From NY Post

If someone you know exhibits warning signs of suicide: do not leave the person alone; remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt; and call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255) or take the person to an emergency room or seek help from a medical or mental health professional.

In Memory of Sarah Fraik ~ June 13, 2011

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in-memory

 

Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease.  She died on June 13, 2011 after a brief illness at the age of 28.

More information will be provided when it becomes available.

~~~~~~~

Sarah F’s mom posted this: “we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah…..”

Also from Sarah’s mom: “a account is set up for sarah fraik at any royal bank the number is 02000 5000823 any donation is welcome to help with bringing sarah home and getting a bench with her name put on it at transfer beach ladysmith thanks everyone.”

Beth Grant writes: “I already have asked her about how people from out of the country can donate and I’m still waiting to hear back. But my offer also stands to have people paypal me or send cheques and I can just go to the bank here and deposit it to the account. There’s an option to Send Money, so you just click on a few things and it gets sent. I’ve sent and received through paypal many times and never had trouble.”

Conversion from US to CAN: http://www.advfn.com/currency-converter/us-to-canadian-dollar.html

~~~

From the Acromegaly Community:

Taking a Lesson From a Tragic Loss

on Wednesday, June 15, 2011. Posted in Blog

Wayne Brown
AcromegalyCommunity.com

Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality.  Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease.  Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28.  I didn’t need to know Sarah to know that this was just wrong!

Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation.  Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable.  It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing.  Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional?  For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress).  I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.

While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL?  Please understand the question I am asking is different than whether you like your doctor.  While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her.  I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities.  Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.

Now does trusting your doctor mean they know everything there is to know about all things medical?  NO!  Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have.  Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician.  Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet.  When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine.  They have to keep trying till they get it right.’  It is impossible for any one medical professional to know everything about everything.  The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.

Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.

Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship?  That is simple.  Honesty.  If you are anything like me, you would rather go to a medical office than a psychic for your medical care.  If you are withholding from your doctor, for any reason, you are detracting from your own medical care – and making it nearly impossible for your doctor to properly treat you!  I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat.  Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!).  Medical professionals and their patients must know they can trust each other.

Ultimately, we are the patients- its kind of like being the customer at a store.  If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment.  If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)?  Again, not an easy question to honestly answer, but essential in our long-term well-being!  If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing.  Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem.  It is not the doctor’s fault that you are not honest with them about your issues.  Open up with your doctor and have a frank discussion- see where things go from there.  But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.

Just remember, starting with a new doc can be difficult.  If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all.  On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability.  All that being said, if you are not happy, and are ready for the switch, then go for it!  Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being!  Don’t stay with a doctor simply because you are afraid to leave.  If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons.  Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.

I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s).  Talk with him or her in a frank and honest way.  If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that!  If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office.  At least the information is being conveyed.  While there are preferred methods of sharing, getting the information is more essential than the method of delivery.

I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away.  Don’t let her passing be for nothing.  We can learn from her.  Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals.  Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health?  And at the end of the day, what is more important than our health?  Dare I say it… nothing.

In Memory of Gregory J. Bart Jr. ~ May 7, 2016

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in-memory

Greg died of a presumed heart attack at the age of 55.

September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”


He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?

You would not.

If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?

You would not.

If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?

You would not.

And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.

And you would not settle for a myopic tailor for that dress, would you?

You would not.

So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.

You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.


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In Memory: Erica Michelle “GaGa” Meno ~ March 6, 2015

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in-memory

Erica was a fellow Cushing’s Disease survivor. She had been through pituitary surgery, radiation, and a BLA in an effort to receive her cure.

I didn’t know her myself, and I don’t know if she was a member of the Cushing’s Help boards but it’s so depressing to know that we have lost another so young from the damage done by this horrible disease.

Erica’s official obituary: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

Erica Michelle Meno returned to her heavenly home on March 6, 2015. Nicknamed, “GaGa,” she was born and raised in Cincinnati, Ohio. She was 38 years old. She graduated from Sycamore High School, Northern Kentucky University and Eastern Kentucky University. Erica had a zest for life and just loved being with her family. She loved sports of all kind and loved to cook. She was an avid reader and volunteered much of her time and many years at The Ronald Mc Donald House.

In addition to her family she had a great love for her pets especially her lively dog, Chesney. She is preceded in death by her grandparents Anthony and Mary C. Meno and Joseph and Katherine Terzo and Aunt, Karen Meno and Uncle, Bruce Ficke.

She is survived by her parents Michael and Mary Meno, devoted brother Ryan Meno and sister-in-law Melanie, loving niece and nephew, Leah and AJ Meno, her aunts and uncles: Frank and Terri Terzo, John Terzo, Judy (Terzo) and Chris Tocatlian, Victoria Ficke and Teri Zingale, cousins: Joseph and Kristen Terzo, John and Lesli Terzo , Amanda (Terzo) and Mike Stewart, Dominique and Natalie Tocatlian, Kati (Terzo) and Chris Mottershead, Dana (Terzo) and Omar Qureshy, Joe Granato, Kelly Ficke, Alex and Melanie Ficke, Vincent, Sam, and Remy Zingale. Erica was deeply loved and will be missed and remembered by many friends and family. Visitation will be 9am until time of Mass of Christian Burial at 10am on Friday, March 13th at The Community of the Good Shepherd Catholic Church, 8815 E. Kemper Road, Cincinnati, Ohio, 45249.In lieu of flowers, the family has requested donations may be made to the Ronald McDonald House Charities in Erica’s memory.https://www.rmhcincinnati.org/help/donate/donate-online or you may also donate by check, made payable to RMHC – Greater Cincinnati, and mailed to Ronald McDonald House Charities, 350 Erkenbrecher Avenue, Cincinnati, OH 45229. Thomas-Justin Memorial serving the family. – See more at: http://thomasjustinmemorial.com/tribute/details/575/Erica_Meno/obituary.html#content-start

~~~~~~

Some of the comments from other Cushies:

My condolences to Erica’s friends and family and to our Cushie community.I too am afflicted with Cushings and a part of me dies every time I lose another fellow Cushie!The world just got a little bit dimmer without her beautiful soul!May she rest in peace and may her memory live on.She was a wonderful person.

~~

Dear Meno family, My name is Melanie and I’m a survivor of Cushing’s Disease. Your daughter and I corresponded a few times on a message board dedicated to this disease. Please accept my heartfelt condolences at the loss of your beautiful daughter. Every time a member of our Cushing’s Family leaves this earth it sends a wave of sadness throughout the world-wide members who live with this disease daily. The tribute you’ve written about Erica is lovely and indicates what a beloved daughter of God she is and how special she is to you and your family. I believe our lives continue on in the next life and believe Erica is now free from pain and sorrow. May God grant you peace and comfort in the days ahead. With love,

~~

My prayers go out to all who knew and loved Erica. Having had surgery for Cushing’s Disease and dealing with it’s consequences myself, I am inspired by her strength and determination to keep pushing forward for her cure. My heart aches that she was taken so early, and I pray she can now rest from her struggles and is at peace.

~~

I wanted to express my sincere condolences to Erica’s family and friends at this difficult time, my thoughts and prayers are with you. Sadly I never got a chance to meet Erica in person, we met though Bobbi Phillips on FB. We both have Cushing’s disease or as Erica called us Cushies and there aren’t many people that understand, it was a comfort to have someone that does. I will miss hearing from her, she will hold a special place in my heart. God Bless Erica!

~~

 

For Rare Disease Day: MaryO, Pituitary/Kidney Cancer Bio

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rare disease day

 

Adapted from Participatory Medicine

The Society for Participatory Medicine - MemberThis is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I’m writing it to submit to Robin’s Grand Rounds, hosted on her blog.

For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a HE) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.

I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”

Anyway, I digress.

All this changed for me in 1983.

At first, I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.

Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal magazine which said: “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. It’s too rare. You couldn’t have Cushing’s. I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.

My husband was on the doctors’ sides. He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.

A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

Later in 1986, I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987, I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, the Hematologist/Oncologist ran a twenty-four-hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis. No matter that I had been pursuing this with other doctors for 3 years.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

When the endo confirmed that I had Cushing’s in 1987 he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterward to prevent uncontrollable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterward, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years, NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. 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.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

My story goes on and if you’re interested some is on this blog and some is here:

Forbes Magazine | MaryO’s bio | Cushing’s and Cancer Blog | Interview Archive 1/3/08 | Cushing’s Awareness Day Testimonial Archive |

Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s. Not what I was looking for!

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.

I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.

The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2010, we have over 7 thousand members. Some “rare disease”!

The message boards are now very active and we have weekly online text chats, weekly live interviews, local meetings, conferences, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more. Because I wanted to spread the word to others not on “the boards” we have extended out to social networking sites – twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups, multiply.com, and much, much more.

People are becoming more empowered and participating in their own diagnoses, testing and treatment. This have changed a lot since 1983!

When I had my Cushing’s over 20 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

I don’t know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m glad that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

What do *YOU* think? How are you becoming empowered? Comments welcome


• Medicine 2.0 (Toronto, Canada) September 17-18, 2009. Robin Smith (staticnrg), Mary O’Connor (MaryO) and Dr Ted Friedman will be panelists. The topic is “Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0”. Robin submitted this topic. She wrote: Paying it Forward in the Digital Age: Patient Empowerment 2.0 using Web 2.0

An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.

Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.

Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.

The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.

From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.

One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.

More info here.


MaryO’s Original Bio

Click on pictures to enlarge.

Christmas 1981Around 1983 I first started to realize I was really sick. At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Then I got really tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time.

A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.

I came across a little article in the Ladies Home Journal which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

Gaining weight in 1986My husband just told me to think “happy thoughts” and it would all go away. A Neurologist gave me Xanax. Since he couldn’t see my tumorwith his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!

In late 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
Fall 1986I was also having trouble with my feet and walking, so I had the distinction of going to two doctors in one day, a Podiatrist in the morning and the Hematologist/Oncologist in the afternoon.

Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s.

It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.

The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.

March 1987 after a week of testingWhen he confirmed that I had Cushing’s he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.

When I left this hospital after a week, we didn’t know any more than we had before.

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) DID die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon,Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. 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.

I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.

Tom and me in Barbados

Update: Fall, 1999:

I went for my regular testing with my private endocrinologist.

Besides the annual testing, he told me that my pituitary gland is shutting down, so I must always have extra cortisone (Cortef) for any medical stress such as surgery or the flu.

Many people are now finding that they need HgH after pituitary surgery, so an Insulin Tolerance Test was performed. My endocrinologist painted a very rosey picture of how wonderful I’d feel on Growth Hormone. It sounded like a miracle drug to me!

I was only asked to fast before the ITT and to bring someone with me to take me home. There is no way I could have driven home. I got very cold during the test and they let me have a blanket. Also, though, lying still on that table for so long, my back hurt later. I’d definitely take – or ask for – a pillow for my back next time. They gave me a rolled up blanket for under my knees, too.

I don’t remember much about the test at all. I remember lying very still on the table. The phlebotomist took blood first, then tried to insert the IV (it took a few tries, of course). Then the endo himself put the insulin in through the IV and took the blood out of that. I remember the nurse kept asking me stupid questions – I’m sure to see how I was doing on the consciousness level. I’d imagine I sounded like a raving lunatic, although I believed that I was giving rational answers at the time.

Then everything just got black…I have no idea for how long, and the next thing I knew I was becoming aware of my surroundings again and the doctor was mumbling something. They gave me some juice and had me sit up very slowly, then sit on the edge of the table for a while. When I thought I could get up, they gave me some glucose tablets “for the road” and called my friend in. I was still kind of woozy, but they let her take me out, very wobbly, kind of drunk feeling.

My friend took me to a close-by restaurant – I was famished – but I still had trouble with walking and felt kind of dazed for a while. When I got home, I fell asleep on the sofa for the rest of the day.

But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! It was so wonderful and I hoped that that was from the HgH they gave me to wake me up.

Edgewater Inn, BarbadosI will have to take this test annually until I do I do qualify for HgH. I got a small taste of what I would feel like on this drug – that weekend I felt much better than I can remember feeling in a very long time. Hopefully, at some point, I will “qualify” for this drug, even though it means a daily injection. I would really like to feel better sometime – less tired, less depressed, more human.

In July of 2000, I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s and I wondered if I could start one myself and we decided that I could. This website (http://www.cushings-help.com) first went “live” July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’m going to make some helpful differences in someone else’s life.

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, aCushing’s Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the “Cushie Helper” programwhere they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

My husband, Tom (PICTURED ABOVE) posted this on the message boards:

“I just read your description of the 9 year ordeal. I am Mary’s husband and much of your story was familiar.Mary diagnosed her own illness. After a prolonged journey from doctor to doctor.

After her surgery and recovery, I found myself at a neurologist’s office for some trivial ailment and the place seemed familiar.

Then it dawned on me that I had been there before with Mary. This was one of the doctors who had failed to listen. Or perhaps simply had no knowledge base about Cushing’s.

In any event, I stopped the process I was there for and changed the subject to the previous visit 4 years ago. I told the doctor to look up his records on Mary O’Connor and study them. Told him that what he would see in his files was a case of Cushing’s, misdiagnosed as something that might respond to Valium.

I said he could learn something and perhaps help the next person who arrived with Cushing’s.

Out of fairness to the medics, the ailment is so rare that a doctor can go his entire career and never see a single case. And it is certainly possible that the doctor may fail to diagnose the few cases they may see.

Mary’s surgery was done at NIH. It came down to them or the Mayo Clinic. At the time we did not realize that NIH was free and we selected them over Mayo based on their success and treatment record. They were happy to learn they had beat Mayo without a price advantage. We were happy to hear it was free.

During the same time Mary was at NIH, another woman had the same operation. She came from Mary’s home town. They were class mates at college. They had the same major. They were the same age. They had the same surgical and medical team. Mary recovered. The other woman died during surgery.

I am an aggressive person who deals directly with problems. I enjoy conflict and I thrive in it.

This experience made clear how little we control. And how much depends on the grace of God.

This year we celebrated our 28th anniversary. Our son has grown into a fine young man and is succeeding admirably in college.
Life is the answer. We keep going on….undaunted and ever hopeful.

Tom O’Connor”

Update July 26, 2001

I saw the endo today. My pituitary function is continuing to drop, so August 6, I’ll Be having another ITT, as described above. Hopefully, after this one, I’ll be able to take Growth Hormone and start feeling better!

Update August 6, 2001

I had the ITT this morning. I don’t get any results until a week from Thursday, but I do know that I didn’t recover from the insulin injection as quickly as I did last time. The endo made a graph for my husband of me today and a “normal” person, although I can’t imagine what normal person would do this awful test! A normal person’s blood sugar would drop very quickly then rise again at about a right angle on the graph.

I dropped a little more slowly, then stayed very low for a long time, then slowly started to rise. On the graph, mine never recovered as much as the normal person, but I’m sure that I did, eventually.

The test this time wasn’t as difficult as I remember it being, which is good. Last time around, I felt very sweaty, heart pounding. I don’t remember any of that this time around. I do know that I “lost” about an hour, though. The phlebotomist took the first blood at 9:15, then the endo injected the insulin and took blood every 15 minutes after that. I counted (or remembered) only 4 of the blood draws, but it was 11:30 when they told me that my sugar wasn’t coming up enough yet and I’d have to stay another 30 minutes. It actually ended up being another hour.

Kim, the phlebotomist, asked me if I got a headache when they “crashed me” and I have no recollection of any of that.

Like last time, I was very, very cold, even with the blanket and my left arm – where the heplock was – fell asleep. Other than that – and my back hurting from lying on one of those tables all that time this wasn’t as bad as I remembered.

So, I waited for 10 days…

Update Fall, 2002

The endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.

I know that I would like to lose weight, but I’d like to do it on my own terms, not over Thanksgiving, Christmas and New Years, not because this endo was rude about it. I left his office in tears. I’m now looking for a new one…

Update Fall, 2004

I left my previous endo in November of 2002. He was just too rude, telling me that I was setting myself up for a heart attack and that I wasn’t worth treating. I had left his office in tears.

Anyway, I tried for awhile to get my records. He wouldn’t send them, even at doctors’ or my requests. Finally, my husband went to his office and threatened him with a court order, The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001, that doesn’t seem like enough records to me.

I had emailed NIH and they said that they would be “happy” to treat me, but it was long between emails, and it looked like things were moving s-l-o-w-l-y. I had also contacted UVa, but they couldn’t do anything without those records.

Last April, many of us from the message boards went to the UVa Pituitary Days Convention. By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me one day last summer. In the email, she asked how I was doing. Usually, I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. And I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests. From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 10 years! I was amazed to hear all this and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I’m going back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He has said that I will end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

So, in a couple weeks, I might start feeling better! Wowee!

For those who are interested, my new endo is Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Update October, 2004

I had cortrosyn and arginine-GHRH stimulation test at Johns Hopkins. They confirmed what the doctor learned from reading my 4 year old records – that I’m both adrenal-deficient and growth hormone-deficient. I started on my “sprinkle” (5 mg twice a day) of Cortef now and my new doctor has started the paperwork for GH so maybe I’m on my way…

Yea!!!

It feels weird to be going back on the cortisone after being off for so many years but at this point, I think I’d sell my soul to the devil not to feel the way I’ve been feeling for the last several years.

Update November, 2004

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we’ll see on Monday what to do about an appeal. My local insurance person is also working on an appeal, but the whole thing sounds like just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving. I guess that’s not going to happen, at least by the 2004 one.

As it turns out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Am I going to be a guinea pig again? The new GH company has assigned a rep for me, has submitted info to pharmacy, waiting for insurance approval, again.

Update December 7, 2004

I finally started the Growth Hormone last night – it’s like a rebirth for me. I look forward to having my life back in a few months!

Update January 3, 2005

After a lot of phone calls and paperwork, the insurance company finally came through at the very last minute, just as I needed my second month’s supply. Of course, the pharmacy wouldn’t send it unless they were paid for the first month. They had verbal approval from the insurance, but the actual claim was denied. Talk about a cliff hanger!

Update January 25, 2005

I’ve been on the growth hormone for 7 weeks now, and see no change in my tiredness and fatigue. A couple weeks ago, I thought there was a bit of improvement. I even exercised a little again, but that was short-lived.

I feel like my stomach is getting bigger, and Tom says my face is looking more Cushie again. Maybe from the cortisone I’ve been taking since October. I can’t wait until my next endo appointment in March to increase my GH. I want to feel better already!

Update March 21, 2005

My endo appointment is over. My endo thinks that my weight gain is from the cortisone, as I’d suspected. He cut that amount in half to see if I would stop gaining weight and maybe lose a little. Because of the adrenal insufficiency, I can’t completely stop it, thought. My IGF-1 was “normal” so I can’t increase the GH.

I made a vacation of this trip, though. A friend and I stayed 2 nights in a hotel and had some fun. The hotel had an indoor pool, hot tub, sauna, exercise room, wireless internet access, free shuttles to Johns Hopkins and the Baltimore Inner Harbor. We had a good time for ourselves, so I came home from this endo trip more tired than ever. Over the weekend, I took 7-hour naps on both Saturday and Sunday. Hopefully, that will get better as my body adjusts to the loser dose of Cortef.

Update September, 2005.

My last endo appointment I had lost some weight but not enough. My energy levels are down again, so my endo increased the cortisone slightly. I hope I don’t start gaining again. I don’t see any benefit with the growth hormone.

Update January, 2006.

A new year, a new insurance battle. Once again, they don’t want to pay so I have to go through the whole approval process again. This involves phone calls to Norditropin (the company that makes the GH), my endo, iCore Specialty Pharmacy (the people who prepare and ship the meds) and my insurance company. This is turning into a full-time job!

Update April 14, 2006

I just went to see my endo again on Thursday to see how things are. Although I know how they are – I’m still tired, gaining a little weight, getting some red spots (petechiae) on my midsection. He also noted that I have a “little” buffalo hump again.

My endo appointment is over. Turns out that the arginine test that was done 2 years ago 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’m off GH again for 2 weeks, then I’m supposed to be retested. The “good news” is that the arginine test is only 90 minutes now instead of 3 hours.

Update June 2, 2006: Kidney Cancer (Renal Cell Carcinoma)

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

Update August 19, 2006

I’ve been even more tired than usual now that I’m off GH. I can’t take my arthritis meds, or anything like Excedrin (no NSAIDs) so my joints are nearly always bothering me and I have to wait out any headaches. I’m also just getting over a UTI.

I just had my 3 month post-op CT scans and I hope they come out ok. At first I was grateful that I wouldn’t have to have chemo or radiation come to find out that neither has been discovered yet which works well with kidney cancer. Apparently, it can resurface any time for the rest of my life. I’m hoping that some of the chemo clinical trials show some good results so I can get this thing before it metastasizes somewhere.

I’m having trouble sleeping (1:20 AM here, now) although I’m always tired.

Whine, whine!

On the plus side – I survived the kidney cancer surgery, and it’s almost vacation time!

Even vacation will be bittersweet, though. 2 years ago, Sue went with us on vacation. She had a great time and she had asked if she could go with us again this year. Of course, we had said yes…

Update October 26, 2006

I went to see my Johns Hopkins endo again last week. He doesn’t “think” that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.

He was happy to see that I had lost 22 pounds since my last 6-month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.

He thought that my blood pressure was low – for me, not for “normal” people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.

My energy levels are lower than when I was on GH, and they’re lower again because I had the adrenal removed, because of my panhypopit, because of my cancer even though currently NED, it can come back at any time, because of my GH deficiency…

Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something “easy”. I’m starting to get very depressed over all this. If this is the way the rest of my life is going to be, why bother?

People mostly assume that everything is OK with me because I am not getting chemo or radiation and because I look so “healthy” (thanks to the Cushing’s/daily Cortef!). They figure that if there was any real danger of the cancer metastasizing that I would be on chemo, like other cancer patients do. They don’t understand that I have to wait and pray because there are no approved adjuvant treatments. If/when my cancer returns, it’s just more surgery. If I’m “lucky” enough and get to a stage 4 THEN I can have chemo/radiation as a palliative measure.

Update December 2006

According to my PCP my blood pressure is truly low. But can I go off these bp meds? Nope…because I have only one kidney, these would have been prescribed anyway as a support for my kidney. Can’t win!

I am maintaining my weight loss but none of my clothes are loose, I can’t fit in anything smaller. Belly is still there. So the weight loss is just a numbers game.

Update March 2007

I posted this on the message boards in late February but many missed it and are still asking…

Walking Wounded, the sequel! Wow! I guess I haven’t been on the boards for 2 weeks or so. I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent.

My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o

I came home and taught my piano students, as usual.

Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn’t want to wait because the pain was excruciating by now and I couldn’t get out of chairs or sofa without using the walker I had from surgery to help pull me up.

So I called my husband at work and he said he’d come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn’t make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us.

They asked about me at the front desk and were assured that I was there although they didn’t see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O’Connor was called… My people realized it wasn’t me and left.

Finally, Tom got home – he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience!

The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room.

Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before. Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing’s. No collapses this time.

They did CT scans (so I don’t have to do my surgeon’s ones – YEA!) and XRays and found basically nothing except lung nodules that hadn’t grown much since my last scan – say what? I didn’t know I HAD lung nodules.

I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn’t do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful.

Tom took me to the sub PCP on that Friday and she’s sending me to physical therapy.

Until yesterday, I didn’t drive at all, and the weather has been awful, so I haven’t even called about the PT yet.

There is still a little pain, and I need the walker to get out of bed, but I’m doing much better.

A weird side thing – Tom was driving my car since it’s a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks.

One day he got it home, slammed the door – and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn’t break. So that was a bit of a problem and $$. No one had ever even heard of this problem before.

Anyway, I hope to get to your PMs, emails and whatever ASAP!

It feels a bit weird being here – like my baby has grown up, left home and doesn’t need me anymore. Can you have Empty Nest Syndrome for message boards? LOL

I have started a new Blog called Cushing’s, Cancer & Music and I plan to keep that updated a little more often than this bio. Rather than the actual events that have taken place, I am letting some of my pent-up feelings out. NOTE: This blog was destroyed by hackers in June 2008 😦 I don’t know when or if I will ever have the energy to rebuild it. Find the newest blog here: Cushing’s and Cancer Blog

Alaskan Cruise, 2007On an Alaskan cruise, June 2007. More about the cruise.

As of the Chicago meeting in July, 2012 I have met 90 members of the message boards (listed as Friends) in addition to Cushies who are NOT on the boards! I have traveled to meet Cushies at NIH in Bethesda, MD, Ohio, Pennsylvania, Oklahoma, Michigan, Wisconsin, Illinois, New York, Florida, Tennessee, Connecticut, UVa in Southern Virginia and Oregon.

Update October 2018

Well, I haven’t been so great keeping this updated.  I have made other single posts after I went back on Growth Hormone in June, 2017 (Omnitrope this time).   I am posting some of how that’s going here.

No return of cancer (Hooray!)

I’ve developed a new allergy to blackberries

I’ve had a lot of problems with my knees.  This post needs to be updated since I had a cortisone shot in my knee on September 12, 2018 – best thing I ever did, even though my endo was not happy.

Update February 2020

Since then, in 2019, I had 2 more cortisone injections.  They’re only lasting about a week to 10 days now so I figure they’re not worth the potential side effects.  I’ll have one once a year before a big trip or cruise, so the next will be in August 0f 2020.

I’m still on growth hormone but I don’t see any improvement.  I’m still napping as many hours a day as I can.

The facial hair is still with me and I haven’t lost all the weight, despite 3 days a week of water aerobics (mostly for my knee).

 

I was so stupid way back in 1987 when I thought that all my troubles would be over when my pituitary surgery was over.

And so I wait…


Cushings-Help.com, and quotes from MaryO was included in the Cover Story of this issue of FORBES Magazine, BEST OF THE WEB Issue. The title: “Use With Care” by Matthew Schifrin and Howard Wolinsky.

Hopefully, this kind of mainstream exposure will help increase awareness for this often misunderstood disease. Read the article here.

MaryOVOICE Chat
Listen live to an archived interview from Thursday, January 3, 2008 with MaryO. Achived audio is available through BlogTalkRadio, the CushingsHelp Podcast or through iTunes Podcasts

Jayne and Robin also hosted a Special Cushing’s Awareness Day live chat April 8, 2008. This chat included a lot of comments about MaryO. Archives are available.

Listen to CushingsHelp on internet talk radio

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