Saturday, July 28, 2012

Boom & Bust: Stress Fuels Market Crisis

As a blogger and patient advocate, I always strive to explain the Cushing's experience in a way that caregivers, family and friends will understand. My hope has always been that if they really understood the damage we face, perhaps our support system would encircle us and protect us as we walk a very difficult road to remission. This does not happen as often as it should, despite nearly four years of blogging, but I am hard-headed. So, I keep trying.

To that end, I am thrilled to share this article, "Boom & Bust: Stress fuels market crisis." This article provides  fascinatingly detailed look at the roles stress and cortisol played during the financial crisis. Cortisol is cited for changing the bodies and personalities of risk-seeking stockbrokers as they faced an uncertain market future. 

The author even names cortisol "the molecule of irrational pessimism." 

I hope you will take a few moments to read this article, and please understand that the changes these brokers faced during the crisis are the same struggles we Cushing's patients face every day, for years and years. While I am not asking for empathy for stockbrokers, per se, I am asking you to read this article with Cushies in place of the stockbrokers. Reading about their symptoms may help you see your Cushie in a new way. If it does, hold her or him a little tighter, and admit you learned something about this illness. Your stock is sure to rise, as it will be music to your loved one's ears. 

Click through to the original article on the Montreal Gazette.

Saturday, July 21, 2012

Boise Glow for Cushing's Awareness

Our friends at Boise Glow for Cushing's Awareness are doing an awesome job creating awareness for Cushing's in their corner of the world. In particularly, I love this nighttime activity. Cushing's is a "disease of the night," and runaway cortisol keeps us awake.  Learn more at http://www.facebook.com/BoiseGlow

Click to enlarge photo.



Thursday, July 19, 2012

Another Doctor Appointment Goes South



Thanks to a fellow Cushie for making this. It is important to show friends and family how dismissive doctors are towards Cushies, often not even letting us make our point and immediately telling us we are "doing it wrong."

You can see another patient's version here.

Wednesday, July 18, 2012

Gambling on a Cushing's Diagnosis: What are the Odds?

A Cushing’s friend of mine recently asked what we can say to our doctors to explain why we think we have Cushing’s. The Cushing’s community knows that the burden of proof falls on our shoulders to prove we have Cushing’s to a doctor, before tests are run and even after positive tests confirm it.  These doctors play judge and we Cushing’s patients must prove beyond a reasonable doubt that we have Cushing’s, often in the hostile setting of doctor’s office after doctor’s office. Seems harsh? Seems unfair?

Doctors are taught in medical school that they are unlikely to see a case of Cushing’s in their entire medical careers.  In fact, doctors admit that Cushing's may be the most difficult diagnosis to make in all of medicine. Sigh. So we walk in, prepared as our Cushie friends have recommended and armed with symptoms list, photo summary, and past lab results. Doctors are still incredibly dismissive and cruel. They blame the patient for their weight gain, regardless of exercise or dietary habits. They routinely dismiss all points the patient makes.  Many doctors eagerly counter every point and spout facts that are incorrect according to published medical literature.

So what are we supposed to do? Give up? No. We keep fighting no matter what.

To that end, I wanted to share the argument I have used for a long time on several occasions. In fact, I just used this during my appointment with a new neurosurgeon this past Friday.

*******

In statistics, we learn the concept of
probability. Probability is the chance that something will happen - how likely it is that some event will happen.  With each variable added, we decrease the probability that each one of those things can occur together at the same time. 

Think of the elusive, rare Cushing's diagnosis as a slot machine with 7 wheels. Each wheel is labeled with nice fruit images and contains one of the following: 

·       all Cushing's symptoms
·       high urine cortisol
·       high saliva cortisol
·       high ACTH
·       positive IPSS
·       MRI showing pituitary tumor

Now spin the wheel.  For a Cushing’s diagnosis, each wheel must land on the diagnostic criteria for Cushing’s listed above.

What is the likelihood that all of those things are going to "hit" and line up for the jackpot?
It is not probable. In fact, the odds are stacked against you to have all those things line up like they do. For us Cushing's patients, THEY DO LINE UP. WE DO HAVE ALL THOSE THINGS CONFIRMING CUSHING'S. It is a RARE occurrence, and it doesn't happen often, but people do spin the wheels on a slot machine and line up all the wheels to win. For us, of course, Cushing's is a HUGE loss -- no win at all.

Now, let’s take a gander at what the diagnosing slot machine would have to look like for me to get my Cushing’s diagnosis, since my doctors require multiple high test results in each of the testing categories.
To confirm my Cushing's diagnosis, it would take
23 slot machines with 3 wheels each all landing on
Cushing's.  Guess what? They did. Lucky me.

·       many Cushing's symptoms (20 wheels, since I have at least 20 symptoms)
·       high urine cortisol (15 wheels, since I have had at least 15 high test results in this category)
·       high midnight cortisol serum (20 wheels)
·       high saliva cortisol (7 wheels)
·       high ACTH (4 wheels)
·       positive IPSS (1 wheel)
·       multiple MRIs showing pituitary tumor (3 wheels)

Now then, based on my lab values in each category, for my diagnosis, we have built a slot machine with 70 wheels. So, let’s imagine me going up to have a seat at this mainframe-sized slot machine with its 70 wheels. 

I pull the arm.
I spin the wheel.
One by one, each wheel lands on the picture showing CUSHING’S.

My Cushing’s diagnosis is confirmed. It is rare, but it is not impossible. Yet, doctors still argue and berate the patient.  You can see why I have very little tolerance for someone who calls my diagnosis, or any Cushie’s diagnosis, into question. It is ludicrous, unfathomable, and unconscionable for any medical professional to doubt us, due to their ignorance, pre-conceived notions, lack of medical curiosity, or their tight schedule that prevents them from listening to us and really understanding our whole history. The way doctors treat Cushing’s patients should be illegal.

My first neurosurgeon told me that in medical school, doctors are taught to find the one disease that explains everything and to not accept many "little" diagnoses strung together. It was imperative to find the diagnosis that captures as many of the symptoms as possible.  I implore the medical community to remember that lesson and do more to help their patients.

There is no doubt why we Cushing’s patients are the determined lot we are. We know our own bodies. It is our unrelenting pursuit for the truth, our unwillingness to give up on ourselves, and our ability to learn about our disease from those who face its challenges every day that enable us to fit all the puzzle-piece-diagnoses together in search for our cure.  

That's why I look at *all* of my friends as Cushie warriors.

Friday, July 6, 2012

"Pituitary Disorders, the Often Missed Diagnosis"

"Pituitary Disorder:  the Often Missed Diagnosis"

Dr. Lewis Blevins is the medical director of the California Center for Pituitary Disorders at UCSF Medical Center.  In this interview, he discusses the trickiest gland in the body.  The transcript and audio are posted on their patient education page.

Thursday, July 5, 2012

Less Fat, Still Weak after Cushing's



Good news. 
Fat decreases after wild, errant cortisol overproduction from Cushing's is stopped. Just like we Cushies told everyone it would. See, it's not just from over-eating and not exercising.
Bad news.  
Muscle weakness persists. Cardiovascular risk associated with unfair fat symptom may remain.  So do cognitive issues

Shoot. This disease just won't let up.

*  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  

Body composition and cardiovascular risk markers after remission of Cushing's disease: a prospective study using whole-body MRI


 2012 May;97(5):1702-11. Epub 2012 Mar 14.

Source

Department of Medicine, Division of Endocrinology, Mount Sinai School of Medicine, One Gustave Levy Place, Box 1055, New York, New York 10029, USA. eliza.geer@mssm.edu

Abstract

CONTEXT:

Cushing's Disease (CD) alters fat distribution, muscle mass, adipokine profile, and cardiovascular risk factors. It is not known whether remission entirely reverses these changes.

OBJECTIVES:

Our objective was to determine whether the adverse body composition and cardiovascular risk profile in CD change after remission.

DESIGN, SETTING, AND PATIENTS:

Fourteen CD patients were studied prospectively: before surgery (active disease) and again postoperatively 6 months after discontinuing oral glucocorticoids (remission). Whole-body magnetic resonance imaging was used to examine lean and fat tissue distributions.

OUTCOME MEASURES:

Body composition (skeletal muscle and fat in the visceral, bone marrow, sc, and inter-muscular compartments) and cardiovascular risk factors (serum insulin, glucose, leptin, high-molecular-weight adiponectin, C-reactive protein, and lipid profile) were measured in active CD and remission (mean 20 months after surgery).

RESULTS:

Remission decreased visceral, pelvic bone marrow, sc (including trunk and limb sc), and total fat; waist circumference; and weight (P < 0.05). Remission altered fat distribution, resulting in decreased visceral/total fat (P = 0.04) and visceral fat/skeletal muscle ratios (P = 0.006). Remission decreased the absolute muscle mass (P = 0.015). Cardiovascular risk factors changed: insulin resistance, leptin, and total cholesterol decreased (P < 0.05), but adiponectin, C-reactive protein, and other lipid measures did not change.

CONCLUSIONS:

CD remission reduced nearly all fat depots and reverted fat to a distribution more consistent with favorable cardiovascular risk but decreased skeletal muscle. Remission improved some but not all cardiovascular risk markers. Remission from CD dramatically improves body composition abnormalities but may still be associated with persistent cardiovascular risk.

*  *  *  *  

Thanks to MaryO for the post.


Wednesday, July 4, 2012

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!

Tuesday, July 3, 2012

A Truncated Life or A Path with Purpose



With all this time today online on a laptop (instead of my iPhone), I stumbled onto my post announcing here that the second pituitary surgery FAILED on May 16, 2011. That's over a year ago. That was 413 days of my life, gone, can't get back, because of Cushing's.  That's 1 year, 1 month, 16 days of not feeling well, not having answers, and not being myself.


When I see that in writing - always more real than living it, somehow - I get teary-eyed.
So many days of suffering.
So many days of heart ache.
So much loss of life. 
Yes. I mean that.
Loss of life.


It may not be many in terms of number of people. I concede that.  
In terms of quality of life, it is unquantifiable. 


Cushing's has done irreparable damage, and that makes me hard to forgive it.  My husband and toddler suffer collateral damage. Cushing's places countless limitations on me cognitively, emotionally, and physically that my family sees, just as I live my daily life.  They don't get to live a full life with me if Cushing's won't allow me to live my full life.


In terms of the every day and big-dream things Cushing's keeps me from doing, boy, the damage is really immeasurable.  I feel the loss of my soul. I miss my identity. Not that I ever really knew who I WAS  was. Seriously.  But I did know what I liked to do, did them, and loved doing them.  So if I am not what I do, but who I am, then Who am I now?

My friend Ashley concurred.  She said, "I feel that way, too.  I feel Cushing's has silenced me... like I was on the verge of something really good, and then Cushing's came along and said, "Shut up. No one can hear you now." 


Word, Ashley. SILENCED. That is so it. I feel that way, too.  I feel like the trajectory of my life has forever been altered by this disease. I hate that part. It really makes me angry.


I think back to when I was a young girl.  I felt average. Not better, not worse than others.  Definitely not more special.  However, I always felt, for some reason, that I was gonna do something BIG, something great. I don't remember (sadly) anyone really telling me that, so I don't know where it came from.  I didn't have any talent to pinpoint, so that wasn't it, unless quoting scenes from 80s movies is a talent.  My family didn't have talent shoes I could step in (sorry family, if you are even reading this).  Regardless of its origin, this feeling really is something that I just carry around with me. Any second, any day, I am thinking this purpose will pop out like clowns in a circus car. 


My life will make sense, and I will have found my purpose.


I don't know yet what that purpose is, but I feel sure that my something great has not happened yet. I am also unsure if Cushing's will hinder that greatness or amplify it. I hope, beyond hope, it is the latter. And more than ever, I hope this purpose presents itself sooner rather than later. I don't know how much longer I can hold on.

Monday, July 2, 2012

I Hate You, Cushing's Disease

Hi everyone. Sorry for such a long absence. In this past, I take time off from writing when I myself am too sick to talk about Cushing's.  When I am exhausted all the days, riddled with headaches, body aches, dizziness, and muscle spasms, I don't feel like the best public speaker for Cushing's. Nor do I have the energy to queue up posts to show up in my absence. Nope. I was too sick for all that.

This absence, like other times, is caused by my own testing, diagnosis, and clearance for third pituitary surgery. That's right. You read that right.

I still have Cushing's disease. 

I still have high cortisol at diagnostic levels on four different diagnostic tests. 

I have a third tumor showing on my pituitary that did not show itself last year at surgery.

I am still fighting Cushing's.  

I hate Cushing's.

When will it ever end?!

High cortisol and high ACTH.
GO AWAY.

Things get really complicated when you are this far into a Cushing's diagnosis. The likelihood of a positive outcome decreases with each stage of treatment. There aren't a lot of people in this world "like you," and even fewer that you may have access to. Nope, for sure, these tiny details make the next decision even more difficult on the patient.


And frankly, when can I cry UNCLE?
When can I say that I've had enough of this beast called Cushing's?
When will this be over?!


I am considering next steps for treatment:  third pituitary surgery vs. bilateral adrenalectomy with risk of developing Nelson's syndrome from an untreated pituitary tumor vs. medical therapy such as Korlym.   Each has its risks and benefits.  Which risk is greatest? Which benefit is greatest? Well, it seems everyone has a different opinion on that.

I fear that the effort to make this decision will exceed the energy I have in a day.  I spent the first 72 hours after learning of the presence of a third pituitary tumor in a tailspin. First, notify the family. Second, notify my Cushies, my besties. Third, reach out to neurosurgeons for second, third, and fourth opinions.  Fourth, reach out to Cushies who have been *here,* who have made this decision, and see if they can tell me something I don't know, something I've forgotten, something I just can't know until I've lived it. Fifth, look around the rest of my life, and do some things that need completing. Things that are super important to me, like completing the redecorating of my preschooler's room. Watch out world, a Cushie's got things to do!

My main concern now is wondering how I will make the right decision. How will I know what to do? Somehow the right path for me will present itself. Right? 


I am keeping my eyes open for all the signs, asking for help from everyone I can, including friends I rely on and can trust. 


I participate in my own healthcare. I am an advocate because this is my life, my body. No one knows it better than me, and I know me best. I've never left me behind.  I've never failed to show up.  I haven't missed any important events.  I have, however, been too busy to listen to myself.  I have placed other opinions before my own.  I have muted my instincts to appease someone else.  


In this situation, after all that has happened to me, after all I have faced, I just can't let that happen. I will know the right answer when it feels right *to me.*   So, isn't that my answer?   If I can keep my aim right there, right in that small spot of people to please, I hope to hit the bulls eye. As long as I can live with my decision, I'll know I made the right one.  When that happens or what it will be, I do not know. Stay tuned as I share information I'm sorting through as I make my decision.