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.

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.

Day 9: Around the Cushie World in 30 Days-- MaryO

Today, I take you to one of my favorite posts from one of my favorite people.  MaryO!

MaryO is a Cushing's survivor and the founder of Cushings-Help.com and a host of internet sites dedicated to understanding the high cortisol to low cortisol continuum Cushies find themselves.  I learned the foundation of everything I know about Cushing's from her message boards and the people who share their  heartaches and knowledge there.  Today, I thank you, as I have said many times before.  Somehow, it just doesn't seem like a big enough word, thank you.  I thank you for all your hard work to keep us Cushies informed and in line.

The Best Day of my Life

Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

You can read all of MaryO's blog posts by visiting her Cushie.info blog, because as she says,
"It's about time there is some support for Cushing's."

Day 7: Around the Cushie World in 30 Days--How I'm a Better Person Now

Hello everyone. Are you enjoying our trip around to vist with other Cushies?  Good. I knew you would.

Today, I want to take you to see Dawn, a Cushie who started blogging as part of the 30-day Cushing's Awareness Challenge in April.  Dawn, you finished, and you did awesome.  In her post entitled, How having Cushing's has made me a better person, Dawn talks about all the ways Cushing's has affected her life.  I loved that she tagged her post 'bright side of Cushing's.'

Way to go, Dawn!

You can visit read all of Dawn's blog at http://mrszebra.blogspot.com/.

"Girl Disappearing to some secret prison, but she's right in front of me."

This blog is about my journey to beat Cyclical Cushing's Disease and hopefully raise awareness to others so that someday this information could possibly save the life of yourself, a family member, or a friend.

p.s.  I loved her blog decorating motif so much I swiped it!  I promise to find my own template as soon as I can dream up something so good.

Day 30: A New Way of Thinking

This is the last day of blogging every day in April for the Cushing's Awareness Challenge.

For many months and like many Cushies, I have been feeling so STUCK and HOPELESS.  I felt like nothing I do seems to matter until I can get Cushing's off my back. There is just no need to keep rehashing what I already know: I am sick and uncured.  I KNOW!  Why must I remind myself of it every few minutes of every day?!


Someone recently reminded me that signs are all around us. Our minds must be open to see it, and our hearts must be open to take it in.  During this challenge, I have had many signs signaling to me what I need to do to move forward in my life.

I realize now that I have the world ahead of me, and it is my duty to pump as much life back into my daily living as I possibly can.

Time to learn to live with it because it is part of my life, at least for now.

From now on, I will work to think about myself in a much more positive light.

I will forgive myself more, and I will give myself a break.

I am doing the absolute best that I can each and every day. Some days I can do some things, and on the other days, I will rest and try again another day.

I must be more loving to myself.  I must drop all the guilt I feel about not being the kind of person/ friend/ mother/ wife I want to be, the kind of person that I used to be, not like this person I just met who is fabulous, or anything I wish I could do but can't quite do it now.

That is such a waste of effort!  I tires me, and I am already so exhausted. There is no reason to pile it on more.

I will make more effort to celebrate my caring spirit as I continue to help those around me who learn to live with Cushing's.

I don't do it enough, but I, too, must learn to deal with Cushing's with Moxie... every hour and every day it is with me.  It is the only way I know to continue moving forward and surviving this journey.

Onward,
Melissa

P. S. Just to compare, you can see day one's post for my Old way of thinking.  As for me, I'm not looking back.

Day 19: CHANELLE in her own words

Take a look at the story of my friend Chanelle, a darling and daring Cushie survivor. I admire her so much for her courage, positivity, wisdom and fighting spirit.  This girl has *moxie*; so much, in fact, that it will take several posts to tell her beautiful story.

late 2006 

9-20-07 (1st pit surgery)

 

Early 2009

September 2010

November 2010

January 2011

November 2011

February 2012

Early 2006 - I was a happy, healthy 16-year-old cheerleader at my high school. I made great grades, had tons of friends and had just won Wildcat Idol, a singing competition at my high school.  I enjoyed writing poetry and even won a contest for an essay I had submitted, also, for my school. I was in chorus and advanced academic classes and just loved being involved in activities like a normal teenager would. Overall, I had a pretty busy and fun life with my major problems being remembering to study for tests and what outfit I would wear.

Towards the end of the year, though, I started noticing that my clothes were getting a little tighter and by the holidays, my dad and close friends were commenting that my face looked different and that I looked like I had put on weight. Now, since I have danced since the age of two and had the typical "dancer body" all my life, I was shocked to hear anyone say I looked different. I could always eat whatever I wanted and never gained weight, so that was devastating. I soon found myself putting away my normal jeans and wearing simple t-shirts and my mom's old pants to school. I soon had to stop cheering since I had zero energy. School was no longer fun since I had no desire to put effort into my appearance or socialize. On top of my ever-changing looks, school and learning, which I always found enjoyable, were becoming impossible. I found myself up at all hours of the night with insomnia, struggling to write essays that I would usually complete in an hour or two. Needless to say, 2006 was not a good year for me. To add insult to injury, both of my grandmas passed away, a great aunt of mine died and one of my old pastors also passed within months of each other, leaving us to take in two of my cousins who lived with my grandmother on my mom's side. So, within a year, my looks, my health and my life changed and I thought my life was falling apart. 

By 2007- I knew that things were terribly wrong. I was struggling to just make it through each day with my depression, insomnia and myriad of strange symptoms. I started keeping a log on MS Word of all the things that would happen to me every day: new stretch marks, sudden outbreaks of acne, tiredness, rashes, hair falling out, etc. I kept that log with the hopes that my doctors could see a pattern and hopefully fix me. At this point, I was also seeing a psychologist, a psychiatrist and my primary care physician who were keeping me on anti-depressants, acne medications and other things to try and repair my quality of life. (Of course, as we know, Cushing's can't be cured with pills and creams... but I had yet to discover my disease).

So I carried on with my treatments and my miserable life. I would simply go to school, come home, take a two hour nap from exhaustion and then be up all night until the next day of school, every day, getting a little heavier and more depressed. That was my existence for months.

Mid-2007- By this time, I had gotten so tired of people not recognizing me (since I had gained about 30 pounds) and went to my primary care physician who literally told me she had no clue what was wrong with me, so she would refer me to a specialist (and her mentor), a pediatric endocrinologist. So I went home and (by the grace of God), I happened to turn on the TV and flip to the Discovery Health channel where Sharmyn McGraw's episode of Mystery Diagnosis was playing. I finally saw someone who had the same thing as me. I didn't know what it was, but when the episode was over, I researched Cushing's disease, printed out pages of information and took it to the appointment with the endocrinologist. Of course, when she first met me and saw me, she knew something was wrong, too. I suggested Cushing's disease and she thought I could be on to something: all I needed was an MRI to prove it. 

After that, the rest is kind of a blur! In August 2007, I got the MRI that showed a 6mm tumor in my pituitary. I had my first brain surgery at John's Hopkins on September 20, 2007. I ended up getting diabetes insipidus with my first surgery, but I felt it was worth it to take care of my health. 

I missed the first semester of senior year with my friends because of the surgery, but it was totally worth it to finally attack that tumor! A few months after, I started losing weight and feeling better, so I went back to school second semester and graduated from high school with honors in 2008. Unfortunately, I only dropped about 10 pounds, and my weight began to creep up on the scale. I was feeling miserable again. In my heart, I knew my Cushing's had come back. 

Through the pediatric endocrinologist, I was able to be put in a medical journal and also spent time at the NIH to be in a Cushing's protocol where regrowth of my tumor was found. By January 16, 2009, I was having my second brain surgery and got out of John's Hopkins again on inauguration day (go Obama!). But sadly, after the second surgery, I never lost a pound and none of my symptoms went away. I knew that it was time to do something different.

By 2010, I was fed up with being sick and started exploring my options. I was considering two treatment options:  radiation or bilateral adrenalectomy (BLA, removing both adrenal glands). When my cortisol levels in my UFCs were coming back greater than 1200 and 1300 with a reference range of 16-50, I knew I had to do something extreme to fix my extreme cyclical Cushing's.  So I opted to have BLA on April 23, 2010.  It was the best decision I ever made. From that June to December 2010, I lost 50 pounds. 


By 2011, From then to now (April 2011), I've lost an additional four pounds, bringing me to my lowest weight of 129 pounds. Besides the weight loss, my skin is perfectly clear, my hair has grown back, and my stretch marks continue to fade. I have enough energy to have a part time job while going to school. I don't need to take two hour naps each day. Of course, I take hydrocortisone and other drugs to regulate my hormones, but I do it happily knowing that the alternative is pure hell. 

Although I wouldn't with Cushing's on my worst enemy, going through this journey from 2006 to now has changed me and given me opportunities that I would have never dreamed of. I was even featured in my local paper!  It has also helped me realize that I want to go into the medical field and that I can do anything I set my mind to. Friends call me their hero, and that is an amazing feeling! 

So for all of that, I have to thank Dr. Lorelle Bradley (former primary care physician), Dr. Catherine Christie (first endocrinologist), Dr. Alfredo Quinones-Hinojosa and Dr. George Jallo (AMAZING neurosurgeons at John’s Hopkins), Dr. Ashish Behari (urologist), Dr. Michael Bryan (current endocrinologist), and all the nurses and staff at John's Hopkins, Kaiser Permanente and Washington Hospital Center for getting me where I am today... but I also thank God for speaking to me through Sharmyn McGraw and Mystery Diagnosis so that I would have my "aha!" moment and basically diagnose my own condition. 

February 2012: a birthday photo shoot. FUN.

~ * ~ * ~ * ~ *

1) How are you now- what can you do now but couldn't before
I'm great right now! Since my BLA, I have gone from 184 pounds with sore joints, painful feet and almost 0 muscle strength to 129 pounds and being able to shop in the misses section of stores again! I also have enough energy to have a part-time job while also being a full-time student. I don't take naps every day because of my increased energy, my hair is looking beautiful and my stretch marks are getting lighter and lighter each year. I also enjoy time with friends and am no longer ashamed to see people for fear that they won't recognize me or comment on how different I look. I plan on working for a while to make money for school and transfer to Virginia Tech next Fall, but for now I'm just a happy, and much healthier student and employee!

2) What you hope to do differently as deal with patients because you had Cushing's, etc. 

As of now, I want to get my undergraduate degree in nutrition (which I became very interested in while at John's Hopkins for my first brain surgery), and I may decide to take the test to become an R.D. afterwards. 

I also dream of going into Endocrinology after my Bachelors (and if I don't want to continue with nutrition). If I were a doctor, I know that I would NOT give up on my patients and also, find the best recourses for them if I couldn't figure out what was wrong with them. After all, that is what saved me. Of course, I would have an extra level of compassion for them, but most of all, I would encourage the ones that have been battling Cushing's for years NOT to give up. I come across a lot of Cushies today that want to throw in the towel and it makes me sad.  If I were their doctor, I wouldn't let them give up. 

My friend Chanelle. I'm glad Cushing's brought us together.

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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.

----@----@----@----@----@----@----@----@----@

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

What would you say YES to if you weren't always saying NO?

Late last night, when we usually head to sleep due to the exhaustion of our days, my husband went to HBO on Demand unannounced and selected a movie. No discussion. No hesitation. Not like him at all.  We forewent the usual pre-movie debate that ends with us not watching any move at all. He chose, and we watched, Yes Man.

Jim Carrey stars as Carl Allen, a guy whose life is going nowhere—the operative word being “no”—until he signs up for a self-help program based on one simple covenant: say yes to everything…and anything. Unleashing the power of “YES” begins to transform Carl’s life in amazing and unexpected ways.

What would you say YES to if you weren't always saying NO? 

Not only am I so unexpectedly moved by this simple notion, but I felt compelled to share this new 'attitude' with my fellow Cushies who struggle each day with all the NOs that life with Cushing's has thrown us--physical and emotional limitations that make us wonder how we will get ourselves through each passing day, and how we will ever evade the guilt we feel for dragging our husbands and children through our misery.

I don't like the life I've settled for in the past few years.

I don't like the overbearing limitations that I feel have been placed upon me, as I struggle to navigate through life among family, friends and a medical community who don't take this rare disease seriously or take the time to understand it.

I don't like the way this disease has changed the person I've always thought I could be.

I will use the dawning of this new decade to stop letting Cushing's control my life more than it already has. I have to continue to live and say yes to life in the face of this terrible and debilitating disease.
   

I want to feel more in control of what happens to me. I can not let this disease define me. It will always be a part of who I am, but it is not all that I am or all that I will become.

It may sound silly to finally GET IT all from watching a movie. After all, I am really not even a Jim Carrey fan (well, besides Liar Liar and Bruce Almighty). Maybe that is the genius of it all, isn't it? I said YES to a movie that taught me how to say YES to life.

I don't know exactly how good I'll be at this--as I face the uncertainty and ‘unfairness’ of a second pituitary brain surgery and may even another surgery to remove the ultimate cortisol culprits (both adrenal glands  in a BLA).  I will try. 


As I try all this time to find my way back to good health and not lose myself to the life this disease forces on me as well as alllllll the other Cushies, I realize I actually have more command over what happens to me than I thought.  That concept--while difficult to self-cloak—will lead me out of the darkness of disease and into the light of possibility and opportunity. And I'll finally learn that this disease has made me a better person that I ever thought I could or would be.

And don’t we all need a little more of that in our days?

Wishing you and yours a good week, a good month, and a good year.

~Moxie Melissa