September 11, 2011

My journey, my future and when "thank you" just doesn't seem to be enough...

I've been meaning to write down and publish these thoughts for some time; however, I just couldn't bring myself to do it.  But I'm ready now.

As many of you know, on August 2nd, life as I know it morphed into something that was, well...partially scary and uncertain.  4 seizures in 12 hours after never having a seizure before was something I thought was a possible result of working myself too hard.  Why it was difficult to speak for a long time after each seizure was a mystery.  But an abnormal CT scan and MRI revealed a quiet answer - a mass in my brain.

Fast forward through trips to a neurologist in Savannah, blood tests, MRI's, IV's, a brain biopsy, medicines and recovery time.  At first, I was so out of it, I couldn't remember what had happened during the much time passed...or answers to questions such as what bills I paid.  I went from working 80+ hours a week some weeks, multi-tasking, and building a business to laying lifeless on the couch or in bed.  It was frustrating and frightening.

I asked my fiance, Jason, as well as my mom and two sisters who drove down from Ohio, to write down everything that happened each day.  And a few days later, when I was coherent again, I looked around my house in awe and I read the list of daily events they created.  I was moved to tears.  My personal friends, co-workers/friends of my fiance, local people who didn't even know who I was visited, dropped off food, cards, flowers and donations in support of my recovery.  You should have seen my house.  Co-workers of my fiance began a fundraiser for my medical treatment.  A group of amazing women photographers - my SOAR Sisters - reached out to me in a variety of thoughtful, selfless ways.  My Facebook page blew up with positive thoughts and prayers from friends from around the world.  People I didn't even know sent me Facebook messages and email with names of doctors who may be able to help me and offers for lodging if I needed a place to stay if I had to seek medical attention in other cities.  It was all so overwhelming - the love that I felt, the support that I had.  It brings me to tears even now to think how lucky I am to be supported and loved by so many wonderful people.

Fast forward through to less-than-desirable aggressiveness and lack of answers by my first neurologist, my anger stemming from the two, a miracle connection with a photographer friend - Andrea - that delivered me into the hands of a new amazing group of neurologists at the Mayo Clinic in Jacksonville, the meeting of my new team of doctors, more tests, and a preliminary diagnosis.

So where does that leave me now?  At the core, it leaves me with a brain tumor.  It leaves me with a team of doctors that have given me great care, information and confidence.  It leaves me with more doctor visits and a functional MRI (fMRI) this week and a diagnosis with treatment plan options the following week. 

There is a lot I have chosen to keep on the DL at this point about the particulars of my situation...the possible diagnoses and treatment options.  I think Jason and I have been told them all, which is comforting and scary at the same time.  I'm one of those girls who'd rather know EVERYTHING instead of being kept in the dark.  But being all-knowing can sometimes be just as scary as not knowing.

From the 20th, which is when I should find out my diagnosis and treatment options, through the 30th, which is when I believe the doctor visit where we solidify a treatment plan will take place, I'm going to hide away for a little while.  One of the reasons is because I am not going to want to talk or think about the upcoming battle for a while...but I will be quietly preparing myself for it surrounded by the ones I love.  The big reason I'm going to go into hiding for a few days after next week is because I am going to be marrying my best friend, as originally planned, on September 24th.  And that, to me, is definitely worth everything.

So how do I feel now?  I'm recovering nicely.  I'm pushing myself to becoming stronger.  I'm preparing for the next battle.  I've come a long way in the 6 1/2 weeks since this all began.  The way I view life and everything in it has changed.

So how did I get through this first phase of the battle?  Well, Jason saved my life (truly) during/after my seizure at home in the middle of the night on August 3rd, so he deserves the first shout out.  (Thanks, honey. I owe you one.)  Honestly, my sense of humor and positive outlook have gotten me quite far.  But what I couldn't do on my own or with Jason by my side, I attribute to YOU.  I was carried through all of the crap to where I am today...a stronger me, both mentally and YOU.  All of you who took time to care, to write, to pray, to give, to support, to cook, to call, to inquire, to visit..."thank you" just doesn't seem to be enough.

The co-workers of my fiance held that fundraiser and sold 350 Boston butt roasts.  The fundraiser was so successful, they had to cut off the number of orders they took and ended up grilling roasts all day and all night before the scheduled roast pick up day came.  In fact, we were told that the company that supplied the meat said it was the largest order of meat they had ever received.  The selflessness of this group - which asks Jason how I'm doing every single day - nearly raised enough money to cover my out-of-pocket brain biopsy expenses when all is said and done.  Amazing.  How can "thank you" ever be adequate enough so they know just how honored I am to have them supporting Jason and me?

My SOAR Sisters...this amazing group of women photogs from around the country...most of who I never even met...they have my backs, too.  They first sent flowers.  Then a group of them sent me a generous donation to help me with medical expenses.  And today, some of them put together a slide show of original, inspirational photos for me, which will help me through this next week.  I've watched it over and over and cried each time.  Not tears of sadness, but tears of joy that I am so loved and supported by these wonderful ladies.  If they have never even met me face to face, how can I ever say "thank you" in a way that they could know just how grateful I am to them?

If I didn't have all of you in my life - Jason, my family, my friends, my supporters near and far - what would I do without you?  Where would I be without you?  I don't even want to think about it...  Because a life without all of YOU would not be worth fighting for.  So there you I have no choice.  Whatever comes next during the journey, I have no choice but to fight with all my might and beat this thing because doing anything less would let myself down and so many hundreds of people who are in my corner, pushing for me to succeed.

While I may still have my quiet moments, my dark moments, and fears from time to time, know that I recognize that it's part of the process...and also know that those things won't keep me down for long.  I have so much to live for...and I see it every day.  Even though it doesn't nearly convey all that I feel, from the bottom of my heart and from the depths of my soul...THANK YOU.  Thank you so very, very much.  I love you all!


  1. Jennifer ~ You are beautiful inside and out! Know that you are loved from near and far! Fight as tough as you can, but when you are tiered or weary, lean into those who love you. We've got your back, you have all of our hearts and prayers. May God give you peace,joy, hope, healing and Love. Congratulations on your up coming marriage. May your marriage and life be blessed.

  2. Jennifer, I am speechless...haven't been keeping up with the Soar blog close enough to know all about this, but am touched by your courage and thankfulness. Will keep you in my utmost prayers...ditto what Kimberlyn Totten above said, and "May He bless you and keep you." Numbers 6:24.

  3. Got your back and in your corner for sure! One of many of your SOAR girls, Lisa