Wednesday, July 24, 2013

Life Can Be Many Shades of Gray

I promised to use this outlet as a way to keep everyone informed, so here is a rundown of our new life since craniotomy surgery two weeks ago. Everyday has been busy, but everyday has also been a gift.  From the moment we arrived home, Dow has been not only in "survival mode" but "change my life-change the world mode."  We weren't home even 30 minutes before we were on the go for knowledge the local bookstore had to offer on diet, yoga, meditation, and cancer.  Then  it was a trip to Whole Foods to scour the aisles for healthy, organic, non-processed nutrition for his healing body.  With an  outpouring of support and information from friends and family we spent the weekend sifting through mountains of data for what we felt would be the best plan of attack.  Though the first weekend home was trying, with new medications to manage, a toddler to love, and a roller coaster of emotions to deal with, we survived.

 By Monday we had contacted  a therapeutic yoga instructor, an integrative medical physician with a specialty in oncology nutrition, and Dr. Tran-a great researching mind in glioblastoma trials at Siteman Cancer Center in St Louis. With a great day trip to the Gateway City we found promising clinical trials to keep in our back pocket for plausible battles later on down the road. For now, we plan to continue on with the "standard of care" practices which include chemotherapy and radiation in tandem with the DCVAX trial at KU and the most intriguing element, a ketogenic cancer diet.  This diet operates under the premise that cancer cells need sugar and carbohydrates to function and grow, therefore if you starve them of these things, they will not function and grow.  On the days he went to work, Dow's stellar diet previously consisted of Dr. Pepper, a Snickers Bar, 2 bottles of 5-Hour Energy, and a package of gummy bears...if he was lucky.  So the new found passion for clean eating, low carb-no sugar diet is nothing short of a miracle!  Including yoga, meditation and visualization has also become a piece of this very complex puzzle.

Dow is hoping to do some positive work in the medical field while he undergoes treatment.  Realizing his current work situation of 12-14 hour night shifts is no longer an option, he plans to do some administrative work for the critical access hospital that currently employs him.  Having been on the other side for so long and now being thrust into the patient aspect his eyes have been opened to the flaws of the way healthcare is being provided and has many ideas and processes running through his busy mind to better patient care and healthcare worker environment.   He is literally chomping at the bit to build a great medical team and practice at Cass Regional Medical Center that provides top level doctors and nurses with a great environment to provide cutting edge Emergency Medicine to the deserving people of Cass County.

Today we had a two week check-up with the neurosurgeon, who Dow affectionately refers to as "The Wizard" and our first meeting with his oncologist.  Sutures came out and he was cleared to take Sloane to the pool.  We will return in another two weeks for a final surgical check.  The oncologist says chemo and radiation will begin August 5th.  As she gave us the rundown of the ins and outs of glioblastoma multiform treatment I found myself overwhelmed with emotions because it was like getting hit with the diagnosis all over again.  The best analogy I can give everyone is that GBM is like the glitter of diseases. You can clean the pile of glitter up (tumor resection), but there will always be specs left behind (cells) and these specs are what the chemo, radiation, and clinical trials try to pick up from his brain.

For those of you who know Dow personally, things have always been very black and white for him. You never have to guess his opinions, moods, emotions, or where you stand with him.  With diagnosis has come self-introspection, intellectual and emotional clarity, prioritizing, and a new found passion for work and all paths to healing. Suddenly life has become several shades of gray.

Friday, July 12, 2013

Life's Not Lived On Paper

I should have known...I should have known that this perfect life I've been living was too good to last forever. A seemingly whirlwind romance, that has yielded 7 blissful years of world travels, adventures, and finally the greatest responsibility you can share with someone...children.    On paper, Dow and I looked like the quintessential cliche.  He, a frivolous doctor and I, a young blonde looking to snag the "ultimate" catch. With a 14 year age gap and very different life experiences, many were skeptical about our respective motives.  But life is not lived on paper, and this works.  From the moment we met it was obvious we were smitten, which immediately turned to love, and mutual respect.  We share everything, including a brain...which makes this so difficult.

What had appeared to be a stubborn sinus infection turned to an excruciating headache last week. Dow being an ED physician avoids hospitals at all costs, so when I offered to take him to the emergency room to get this headache checked out and he agreed, I knew something was going on. We were quickly seen, quizzed, and he was whisked of to get a CT.  As we waited for results, we joked about the fact he'd never really experienced a headache how silly he was going to feel when they told him, it was just sinus pressure.  Then it hit us like a ton of bricks. "Dow, you have a brain tumor."  The phrase echoed in my head as I processed the words. Having spent many years working in a hospital, I'd always thought about my reaction to crushing news like this as I had seen it delivered to so many people before.  I immediately jumped in the hospital bed with my best friend and began to cry.  As the tiny baby in my belly began to writhe around with the new found stress in his cramped quarters, the contents of my stomach could no longer be contained with the realization that I had an almost two-year old daughter at home, a 22 week baby boy in my belly and a threat that the person who had promised to help me raise these little beings was now facing the fight of our lives.

Those first couple of days in the hospital are all a blur, and the long holiday weekend at home felt like an eternity waiting for our Monday appointment with the neurosurgeon.  The appointment came and went with a flash and we were set for a Wednesday morning right temporal craniotomy.  The MRI showed a rather large tumor with well-defined boarders. All good things for surgical recovery.  Pathology of the tumor would help guide our future steps, but surgery is not a cure and chemo and radiation would be the next logical move.  We spent the night before surgery playing with Sloane and discussing possible outcomes of the morning to follow.  Fear of the unknown is an incredibly powerful emotion.

While the love of my life was meticulously having the layers of his protective shell peeled away, I was being comforted and occupied by wonderful friends and family. 4 hours came and went with good reports and finally we were greeted by the surgeon.  He said things went well, but was concerned Dow may have some left-sided weakness or neglect due to amount of tissue they had to remove.  As I waited to see what laid behind the curtain I envisioned all the different ways I thought he might look.  To my surprise he looked just like the person I married.  Then came the real test.  He looked at me and said "love of my world..." Relief! He knew me, he remembered everything.  No apparent memory or cognitive losses, and fully functioning extremities one hour following brain surgery.  Nothing short of a miracle.  The following days have been spent astounding family, friends, and medical personnel with his determination and recovery response.  We are now at home, two days post surgery and continue to strategize our plan of attack. Chemo, radiation, research trials, clean diet, and positive energy. With the news of a glioblastoma that pathology brought this evening comes even more determination.  The research, statistics, and overall reports can be grim. But life is not lived on paper and words on a page can be much different than reality. We plan to approach this as we have everything else in our life together, surprise everyone and beat the odds.