Thursday, April 19, 2012

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 2011From 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.

Day 19: Chanelle's Heart Filled with Art

Stories of the Heart: Chanelle

Written by Katy Bourne

After becoming depressed, lethargic, and losing grasp of her zest for life, Chanelle Felder knew that something wasn’t right. Because she was a lifelong dancer, she thought she was tuned into her body, yet over the course of a few months, she was beginning to notice that she was unable to move in the graceful and carefree way that she usually did. Her every step was slower, heavier, and—unbeknownst to her—a step in the wrong direction in terms of her well-being. Along with her labored movements, she also began to experience overwhelming fatigue, numbness in her hands and feet, hair loss, terrible acne, and a plethora of depressing ailments…along with actual depression! Next came weight gain and also “brain fog,” an inability to concentrate or even speak coherent sentences. She started having difficulty in some of her favorite classes. This was when her family knew that something was definitely wrong. After a long diagnostic process, an MRI revealed that Chanelle had a tumor on her pituitary gland and she was diagnosed with Cushing’s disease. She was just 16 years old.

Cushing’s disease is a condition in which the pituitary gland produces too much cortisol, a vital hormone that helps the body respond to stress, helps the metabolism of food, and even determines when you wake up in the morning, among other things. Cushing’s disease is usually caused by a tumor on the pituitary gland, which is located at the base of the brain. There are multiple symptoms: fatigue, weight gain, bone pain, stunted growth,  hair loss, muscle weakness, acne, confusion, depression and fatty deposits on the face and between the shoulder blades. Because symptoms mirror those of numerous other conditions, it is often difficult to diagnose, and the first line of treatment involves a special type of brain surgery to remove the tumor and, in some cases, the removal of the adrenal glands is necessary if brain surgery isn’t enough.

With the onset of her illness, Chanelle experienced a range of emotions. She was confused as to why this was happening to her. She was also angry and scared. She was worried for her parents and also struggled with the overwhelming new experience of hospitals, surgeries, medical procedures, complicated diagnoses, and the barrage of needles, IV’s, MRI’s and tests that were necessary to stop the madness that was tearing apart her body and her life. Because she had always been athletic and fit, the changes in her body were particularly distressing. She gained a significant amount of weight and developed “moon face,” a rounding and reddening of the face, which is a common symptom of the disease. “It was very, very difficult,” she recalls “and not being recognized by people that I’ve known my whole life is probably the hardest part of all of this”.

During Chanelle’s first hospitalization, a child life specialist paid her a visit and gave her a copy of Chill & Spill.  Being fiercely creative by nature, Chanelle took to it immediately. She says, “My first impression? I loved it.”

She was drawn to the artwork and liked the interactive quality of the book. She loved the quotes inside the back cover. “A lot of the quotes were so true and just helped me get through some things.”

The writing prompts were also very useful to her, especially when the brain fog made it hard to collect her thoughts. Chill & Spill became more than a journal for Chanelle; by adding her “own things” to it, it became a scrapbook of sorts, or a creative log of her experiences. “I took it everywhere with me, every doctor’s appointment and everything.” She invited people that she met along the way-nurses, doctors, friends and other patients- to sign the book and to write words of encouragement. “The book started out with being an outlet for me to get my thoughts and feelings on paper, but it really became a tool for me to connect to other people.”

Chanelle says that Chill & Spill reinforced that it was OK to feel whatever she was feeling. It also served as a chronicle of her strength throughout a very difficult ordeal. “You can use Chill & Spill as a tool to go back and look through your personal journey, and just see how strong of a person you’ve become out of your experiences.

Chanelle believes that anyone could benefit from Chill & Spill. “It’s all-encompassing. It can help you cope with something that you are going through, whether it is something that is a devastating event as in health problems or a death in the family or just everyday life. Everybody goes through a bummer day when they just need a place to chill and spill.”

Chanelle credits Chill & Spill with helping her get through her illness: “I am just so blessed and so thankful for what Chill & Spill has done for me and for all the things that have come out of just having that notebook. Chill & Spill helped me go from this place where there was nowhere else to go…to a place where now I’m just so thankful for everything I’ve been given.”

NOTE: You may purchase the book Chill & Spill at the Art with Heart Shop.