In Memory: Edward H. Oldfield, MD, 1947–2017

Dr. Oldfield was my pituitary surgeon at NIH back in 1987.  This was back in the olden days of transsphenoidal surgery.  I honestly expected to die but this man saved my life.

 

Ed started as Senior Staff Fellow in the Surgical Neurology Branch at the NIH (1981). After 5 years, Ed would become the Chief of the Surgical Neurology Branch. He would stay on as Branch Chief and lead the neurosurgical effort at the NIH for the next 21 years. During his tenure, he developed clinical, research, and training programs in epilepsy, congenital malformations, syringomyelia, nervous system neoplasia, drug delivery, and vascular malformations. The strength of these programs was his leadership and their multidisciplinary nature, which incorporated physicians and scientists across the basic, translational, and clinical arenas. Research investigation was always targeted at defined clinical problems. Under his direction, these programs shaped understanding of the studied neurological disorders, as well as improving patient care.

Read the entire obituary here: Edward H. Oldfield, MD, 1947–2017

Day 21, Cushing’s Awareness Challenge 2016

Since I’m posting this on April 21, I had a built-in topic.

The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us.  Natalie was the Cushie in the middle.

Today is the anniversary of Natalie’s death.  Last month was the anniversary of Sue’s death. I wrote about Janice earlier.

It’s just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and getting people into remission.

Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing’s or related to Cushing’s symptoms?

I know far too many people, good people, who suffered for many years from this disease that doctors said they didn’t have.  Then they died.  It’s time this stopped!

Speaking of death – what a cheery blog post this is turning out to be.  NOT!  Unfortunately, this seems to be one of the realities of Cushing’s.  Just last week we learned of another Cushie who died. 😦

 

Tomorrow will be cheerier – watch for it!

Day 5, Cushing’s Awareness Challenge 2016

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

 

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

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

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

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

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

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

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

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

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

Day Twenty-one, Cushing’s Awareness Challenge 2015

Since I’m posting this on April 21, I had a built-in topic.

 

The image above is from our first local meeting – note the 6 Cushing St. sign behind us.  Natalie was the one in the middle.

Today is the  anniversary of Natalie’s death.  Last month was the anniversary of Sue’s death. I wrote about Janice earlier.

It’s just not right that this disease has been known for so many years, yet doctors still drag their feet diagnosing it and curing Cushing’s.

Why is it that we have to suffer so much, so long, and still there are so many deaths from Cushing’s or related to Cushing’s symptoms?

I know far too many people, good people, who suffered for many years from this disease that doctors said they didn’t have.  Then they died.  It’s time this stopped!

Speaking of death – what a cheery blog post this is turning out to be.  NOT!

I had been following the blog posts of a young woman who had “my” cancer”.  She recently died.  I never knew her but she sounded like such a wonderful person who truly lived while she had the chance.

I wish I could be more like that and have a real life while I’m still here.  My life seems to be reduced to doing for others.

When is it my turn?

 

Day Fourteen, Cushing’s Awareness Challenge 2015

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

 

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

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

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

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

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

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

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

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

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

 

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