Boats, Bikes, and Greyhounds


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.
It is my pleasure to introduce you to C Michael Miller.

I hope…

I hope that advances in technology will allow more understanding for the less known medical issues.  My own Acoustic Neuroma (benign brain tumor) diagnosis took over a year to find, due mostly to a lack of awareness of the condition — both in the general population and in the medical community.

I wish…

I wish that everyone with a brain tumor (or any other major medical ailment) had a support network as amazing as mine was.  My wife, family, friends, doctors, therapists, and everyone else I came into contact with during my treatment and recovery were incredibly helpful and supportive.  I wish the same for everyone dealing with a difficult diagnosis.

I dream…

I dream of a time when the medical treatments for all brain tumors are less invasive and more successful.  Period.

I am (be)…

I am stronger because of my brain tumor.  I have gone on to new achievements in life, including long distance bicycling and writing a book.  I look forward to continuing to find new challenges.

Diagnosis and Treatment:

I was diagnosed with a 3.9cm Acoustic Neuroma (benign brain tumor) in 2009.  It was pressing on my cerebellum, brain stem, and facial nerve.  I had a fourteen hour Trans-Labyrinth approach surgery that got most of the tumor, but left a small sliver to preserve my facial nerve.  I also contracted Meningitis during my recovery due to a Cerebrospinal Fluid leak.  The tumor and surgery left me with some partial facial paralysis and deaf in one ear.

C Michael Miller’s MRI

3 things about me:

I went from a hospital bed after surgery to finishing a one-hundred mile bicycle ride a little over a year ago.  Crossing that finishing line (photo) marked the end of my physical recovery.

Crossing the finish line

I was lucky to not have my balance affected dramatically by my surgery, which has allowed me to continue my passion for sailing.

2012 National Ocean One Design regatta in Annapolis. I’m kneeling just over the “Bad” in Bad Cat.

I am passionate about greyhound rescue- my wife and I have been a foster home for our local greyhound rescue group for 10 years. (photo of our Rider)

Rider

I was inspired to write a book, Diagnosis: Brain Tumor – My Acoustic Neuroma Story, about my brain tumor experience. I’m excited to be able to share hope with others.  You can find more info at www.cmichaelmiller.com. (cover photo)

Diagnosis: Brain Tumor – My Acoustic Neuroma Story

If you would like to submit your profile for Brain Tumor Thursday here, please email me directly at memomuse@gmail.com or you can check out the information page and read past archives.  Caregivers and loved ones are welcome to share their profile too, following the same template. #BTSM and #BrainTumorThursday is a wonderful community reaching around the globe with out-stretched arms and love. If you are on Twitter, you can use the hash tags #BTSM and #BrainTumorThursday to reach out to this wonderful community.
You can leave C Michael a comment here or email him directly at author@cmichaelmiller.com. Thank you for your support of Brain Tumor Thursday.

If I Only Had a Brain


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.

It is my pleasure to introduce you to Amanda.

I hope….

That in life, I will touch many people hearts and help to make a difference in someone’s life.

If I Only Had a Brain Foundation is a non-profit Amanda founded

I wish…

That someone will find a cure for cancer and be able to detect it early on in life.

I dream….

To open my own camp for children and families with children suffering from brain tumors and epilepsy.

I am…

A lover. A person who’s life goal is to help people and to make not so good situations better.

I am a 24 year old who needs to make a difference.

Diagnosis and Treatment…

I was diagnosed with a pituitary tumor when I was 20 years old, one that was treated with medications for about 3 – 5 years. My tumor effected everything; my mood, my life, my dreams and ambitions. It consumed me and made me a completely different person. In March of this year, I was no longer responding to medications and sought out a neurologist to find out my next option.

I had two MRIs in 3 weeks in which my tumor trippled in size. I was referred to a neurosurgeon and the following week was in surgery. Luckily for me, I did not have to have a craniotomy. My surgery was done all through my nose (endoscopic skull base surgery) at New York Presbyterian Hospital by Dr. Theodore Schwartz.

I had a few complications –learned that I was severely allergic to the anesthetic, as well as morphine and ended up with a cerebral spinal fluid leak at my surgical site, as well as where they had done an epidural. I was in a coma for almost a full day where I was in the ICU and then moved to the neuro unit. A week after my surgery, I had to go for a blood patch to fix the leaks, which landed me on bed rest for a month and a 1/2.

While on bed rest, I decided to start my own non profit organization called  If I Only Had A Brain Foundation.

If I Only Had a Brain Foundation

My goals with the foundation are to open a summer camp for children with brain tumors and epilepsy that is focused around art, music and sports; all with theraputic techniques involved. I am holding my first silent auction and benefit dinner September 16th at the Olde Mill Inn in Basking Ridge NJ. All are welcomed. Tickets are $85 please email me (IfIOnlyHadABrainFoundation@gmail.com) if you are interested and would like to share your story! All of this years proceeds will be donated to Dr. Schwartz’s Brain Tumor and Epilepsy research and clinical development fund! Help me help others like us!!

I Don’t Want to Say Goodbye — So, I Will Say Hello


I am going on a trip to Wyoming without my husband and son.  I am going to visit my mom and spend time with her. She is in a nursing home.  Last May I got a call on a Thursday from the nursing home that she was very sick and that I should get out there to see her.  I got the call on a Thursday night and I was on a plane Saturday.  I thought that she was going to die.  In fact, I have thought she is going to die since she was diagnosed in 2000 with brain tumors. It’s a pretty heavy burden to carry.

My beautiful mother, Betty.

Unfortunately, my son and husband cannot make the trip with me.  I am very nervous about leaving my son for a week.  We are very attached to each other.  Our family practices Attachment Parenting.  It’s not even something you practice, it’s just something you do. And I think a lot of families are practicing Attachment Parenting without even knowing it, but that is a topic for another time.

My son is still nursing, and now I am worried about that.  I plan on pumping while I am out there.

I decided to spend eight days out in Wyoming (two days are travel days) since my 20th high school reunion is happening, as well.

There is nothing more beautifully blue than a Wyoming sky!

My sister has warned me that my mom has declined even more.  She was pretty much bed ridden and could not move from the waist down last May.  Now, she can hardly move her hands and has to be spoon fed her meals.

For most people, I assume you think this would be the most difficult thing in the world to experience.  I am a little callous about the whole death thing to be honest.  I have been expecting her to die for so long, that I have failed at times to see she is still living.  It is hard to accept this could be the last time I see her.  OK, now I am feeling sad and am not so callused.  I think that is why I feel so anxious.  I just don’t want to see her so helpless.  If you want to read an essay I wrote about her and the impact she made on me as a mother myself, read this: Magic Mama.  Here are some past posts about my trip to Wyoming last May if you would like to read them.  You can also read the archives by using the archive tab on the sidebar.

My mom, Redhead Betty

I don’t want to say goodbye — so I will say hello.

Anyway,  I am going to be offline for a week.  I am not going to log on to a computer. Anywhere. Anytime. Period. I do not have a smart phone, so I will only be able to text my friends and call people.  I think it will be good for me.  The fact that I will in Wyoming will magnify this sense of disconnecting with technology.  I am burnt out from social media (I am trying to build a platform as a writer and I really have no idea what I am doing.  I am just putting myself and my work out there).  I have also started to focus more on the great relationships I have built. I have met so many wonderful cyber friends.  I am evolving and learning more and more about myself as writer everyday.

I am not totalling going off the creative grid.  I will be taking photographs and writing by hand in my notebook and journal.

I have also been working really hard on my Attachment Parenting motherhood memoir.  It is in the editing stage and I am about 85% done until I feel it is as good as it can possibly be.  Then I will begin the submission process with various agents.  An agent in New York (I love saying that — it sounds so important and distinguished) is reading the manuscript now, as well as the book proposal.  I have been working on putting the book together so it is a complete manuscript.

Writing a book is a long process.  Right now I am excited about the future of my writing career as I have evolved in the past six months and I no longer look for outside validation to acknowledge I am a “real” writer.

I am also working on finishing up this memoir so I can get started on my next book project: The Evanston Community Kitchen.  This book is about my mother’s side of the family.  I’d tell you more about it, but it is all on the website.  If you enjoy history and food, I pretty much can guarantee you’ll enjoy the story.  And that story is still growing; in fact, I have merely only planted the seeds.  It is very exciting.  I am bringing my video camera and tape recorder so I can interview my mother.  She is still mentally “with it.”

I will leave you with a slideshow of some photos of Wyoming. It truly is like no place on earth.

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PS – I dyed my hair red.  My mother is a red head.  I was pretty nervous about it, but I have received feedback that it looks great.