A Cushie's Job: Trudging through the Medical Literature

If you have spent any amount of time on this blog, you will know that I am patient advocate who encourages you to be the most informed and self-aware patient you can be.  For us Cushies, especially us cyclical Cushing's patients, it is imperative to be up-to-date on the medical literature.

You also know how difficult that task can be as we fight to keep our energy up for basic daily tasks and chores.  You also remember how Cushing's causes cognitive impairments that just don't give us the right state of mind -- clarity or positivity -- to take on a project this big.

So, I decided to just post stuff here, as I find it.  It may be a repeat (sorry, I probably forgot), or it may be new. Regardless, it will be stuff I am stumbling through as I relearn everything I have to know about Cushing's in order to make my decision.

I am reading through the medical literature for articles like Long-term remission rates after pituitary surgery for Cushing’s disease: the need for long-term surveillance posted by our dear Cushie friend Robin at Survive The Journey.  I am also trying to wade a list of articles my friend Susan recommended about cyclical Cushing's posted on PubMed, the government's database.  These free articles include research done with your tax dollars at the National Institute of Health (NIH). The NIH is considered an authority on Cushing's and even cyclical Cushing's. Based on what I have seen in my five years, the NIH seem to specialize in pediatric Cushing's cases more than adults, i.e. I see more pediatric patients than adult patients accepted for testing and treatment at the NIH.

So, I have to make my way through the medical literature about:

• quality of life for patients after several pituitary surgeries vs. quality of life for those who chose BLA
• remission rates for each type of treatment (3rd pituitary surgery vs BLA)
• enzymes and other hormones produced in the pituitary that may vanish after repeated pituitary surgery
• patient success stories for each

I mean, all this and a bag of chips. EVERYTHING!  I read a lot of this stuff in the beginning. It was "this could happen to me" reading, so the shock resonated longer than the information. Meaning, the scariness stuck when the facts didn't. 

Now, I find my mind so hazy that I just can't read through these medically-rigorous articles anymore. I really struggle.
I can't remember what I read already.
I can't find something I already found before.
I can't even think of good keywords to search.
I've already made a million laps around the internet.

It's a mess. I AM A MESS!

So, being that it is my blog, this is what I'm gonna do.  I plan to "store" articles here that I am reviewing for my own benefit. If you see something that you have never seen before, well, you benefit, too.

HEY!  THEN MAYBE YOU CAN MAKE MY DECISION FOR ME!

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April is my favorite month of all. I think about it all year!

It's Cushing's Awareness Month.  On April 8th, we honor Dr Harvey Cushing's, the father of modern neurosurgery and the namesake to this terrible disease I have. We don't blame you, Harvey. We like you!

I wanted to let you in on a project I've got going. In appreciation of where I am in my journey and all the close friends I've made along the way, I plan to blog every day through the month of April. Maybe, just maybe, a few patients suspecting Cushing's will see enough information to reach out and stand up to the MDs that are blocking their way to treatment, cures, and ultimately, reclaiming their lives.

Now, back to the writing and daily blogging for a sec. For someone so scatterbrained, exhausted, and unreliable as someone with Cushing's, even agreeing to a challenge strikes fear in me. Eek. That's a lot of commitment, and Cushing's makes us so flaky, I really hate that part. All I can do is try, right?!

This blog has been an important part of my life since its inception in May 2008. It was a special place that I created where I could talk about Cushing's in any way I wanted, any time I wanted. For the past three years, I have shared as much and as often as I could of myself, my experiences, and tidbits of knowledge I accumulate along the way. Bringing more awareness to others is critical to how I have made sense of and come to accept this haunting disease.

So for me, this challenge is very personal.

As a pre-disease perfectionist, I always wish I could do more here.  I wish I could blog every day. I have so much to say Cushing's and how it changes the trajectory of my life each day.  However, I struggle to maintain the energy for myself and my family. For this one month of April, I really want to work to balance my focus on Cushing's and my focus forgetting Cushing's enough so I can be present with my family.  I hope I can hold it all together. I can only do my best.

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I always wish this body and mind would let me do more or not hold me back.  I feel so trapped in this body.  It is also so important to my self-identity to combat this reality of me being stuck inside the house all day.  I realize I can be sick with Cushing's and still contribute something to this world. With this blog and these numbers, I sorta kinda maybe see the impact I have already made in my little corner of the Cushing's world.  

I think of all the Cushing's patients -- fearful, lost, defeated -- that have come to me by way of this blog, and I am thankful that something I have done could help another kind soul in this world. I always wish I could spend more time with each person who writes me--four people last week!--but I am without a doubt always rooting for them. That's what I see in this counter, and it always makes me smile. 

Seeing that graph below makes me feel pretty, pretty, pretty, pretty, pretty certain that there are many more undiagnosed Cushies in this world than any doctor would ever care to admit.  That’s fine by me.  While I can’t control the doctor side, I can do my part to educate and advocate for the patient side.

Hope you stick around in April for a fun month, as we learn more about facing Cushing’s with Moxie.

Bye for now.  Melissa

Apathy and Pituitary Disease: It Has Nothing to Do With Depression

For the regular readers of this blog, you know that I may be more bothered by my languishing mental acuity than changes to my body. As my previous two posts show, my body has faced significant changes. Truthfully, I am bothered by both, rightly so.

I want to share a medical article Susan posted today. She is an active member of the message boards. We frequently share peer-reviewed medical literature, always in an attempt to understand our disease better. These "Cushies" know more about Cushing's than many, MANY endocrinologists.

I encourage you to click through and read the article below. I will excerpt a few passages here.

Apathy and Pituitary Disease: It Has Nothing to Do With Depression.
J Neuropsychiatry Clin Neurosci 17:159-166, May 2005. Michael A. Weitzner, M.D., Steven Kanfer, M.D. and Margaret Booth-Jones, Ph.D. Tampa, Florida. © 2005 American Psychiatric Press, Inc.

ABSTRACT

Increasingly, patients with pituitary disease are evaluated and treated at cancer centers. In many ways, these patients resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis. The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.

CASE SERIES

Case 4 (BLOGGER NOTE: This is totally me! I moved it to the top spot because this is a "cushie.")
Ms. D is a 36-year-old married Anglo woman, employed as a nurse, diagnosed with an ACTH-producing pituitary microadenoma in 1992. She was treated surgically following a brief period of hormone deficiency. At the time of her psychiatric assessment, however, she had regained full hormonal function. Ms. D reported that since regaining her hormonal function she noticed some "dragginess." She reported there were times when she did not feel very motivated, and she thought that it took much more energy for her to do her normal activities. She reported that when she would take pseudoephedrine for sinus problems, she would see things "with more clarity" and that she would be able to be more focused in her attention and her ability to complete her tasks. Otherwise she tended to procrastinate and get distracted from various tasks.

Case 1
Mr. A is a 48 year-old Anglo lawyer and architect, diagnosed with a pituitary adenoma (clinically nonfunctioning) and treated with a transsphenoidal resection in 1997. He first noted memory problems in 1991 that worsened over the years, causing problems such as concentration and focused attention. He reported problems such as getting lost in familiar places and forgetting the names of people he had known for many years. He believed his thinking process was slow and he was "not as quick on the uptake" as before. He reported that he had an excellent memory, never having to use a reminder book of any kind prior to these symptoms.

Case 2
Ms. B is a 55-year-old Anglo homemaker with a history of a prolactinoma, diagnosed 15 years before her psychiatric evaluation. She reported that her symptoms of the tumor were primarily mood swings, headache, and loss of menstrual periods. She underwent surgery followed by radiation therapy, ultimately developing panhypopituitarism. Since then, she has been managed on hormone replacement, but she began to notice short-term memory difficulties. She reported difficulty finding the right words to express her thoughts. She also noticed difficulty in concentration and focused attention. She reported occasional fatigue and depressed feelings. She reported intermittent suicidal thoughts when she reported the depressed mood, but no active plans of suicide were reported during those times.

Case 3
Ms C. is a 47-year-old Anglo woman, employed as a management supervisor and diagnosed with a pituitary macroadenoma (clinically nonfunctioning) in 1994. She underwent transfrontal surgical resection and did not receive any postoperative radiation treatment but did develop panhypopituitarism. Since 1996, several changes in her behavior and personality were noted. Prior to the tumor she was a very active person. She was able to do very well at work and maintain a leadership position. She could do multiple tasks at once and received a lot of satisfaction from her work. However, after her surgery and recovery, she noticed that she was no longer able to multitask. She was deriving less satisfaction from her work and experienced transient periods of sadness. However, she was most concerned about her lack of energy and motivation. When she was able to work, she had to organize her activities very thoroughly and continuously write down everything in order not to forget what her tasks were. It took a lot of mental energy to function, and after work she would often need to take a 2-hour nap when she returned home. She showed no motivation to adequately take care of her home, including normal household chores. She reported she was not able to muster up much enthusiasm to interact with her grandchild because she was concerned about her energy and drive.