Tumor Tacklers

Some days are really good.  Some days are really tough.  Jon has completed 5 rounds of chemo.  He has one more to go.  Four days before he starts, we will take part in the National Brain Tumor Society Jone Beach Brain Tumor walk.  Last year was the first ever NBTS walk on Long Island.  We went the day after finding out Jon's tumor was growing, heartbroken and depleted.  We were a small team of family and a few friends, 15 at best.  Maggie aptly named us Tumor Tacklers and we proudly wore shirts bearing that name.  We raised only a small amount of money.  What mattered most was the sense of community and determination we left with.  We became part of a greater good and we felt rejuvenated.  So much has happened since that walk.  We've been touched by so many people who are in similar situations or far worse...an old friend, a teacher, a co-worker, a hospital roommate, a 4 year old little girl.  We listen, share, comfort, fight back, unite.  On September 19th, Tumor Tacklers will be walking again.  This time 60+ strong with over $6000 raised.  By doing this we feel empowered!  So, although there are hard days, we are relentless in our efforts to find a cure and continue to fight for all those who are battling and those who have given their battle over to us because they were too weary to continue.

Talk to Me!

A teacher friend of mine at the High School came to my office yesterday and patiently waited for me to get off the phone.  I didn't want him to leave without finding out why he stopped by, so I put my call on hold. I went out to say hello.  He looked at me very seriously and said, "I have to apologize to you."  I said, "What are you talking about?"  He went on to tell me how upset he was at a previous conversation that we had prior to my surgery.  At that time, he had been telling me about some medical issues that he was having difficulty with. "I want to tell you to how insensitive it was that I was complaining about my issues while you were about to have brain surgery."

This type of experience has happened to me many times over the past 6 years. People will either stop short in the middle of telling me their difficulties and frustrations, or they will qualify their story by acknowledging that "It's nothing compared to what you are going through."  When you are telling me what you are you going through in your life, I am NOT thinking, "How can this person complain about their problems while I am battling a brain tumor.  This has this NEVER entered my mind.

The truth is, I want to hear about your life.  As I always say, "Everyone goes through something...no one gets through life unscathed."  Life is a journey, and we all have bumps along the way .  As you have listened and supported me, please allow me to do the same for you.

I appreciate everyone's support.  Physical effects from the surgery have ended.  I feel like I am at about 90%.  The last 10% is building endurance and stamina.  I think this will still take some time. The biggest issue right now is dealing with the monthly Chemotherapy treatments.  I have completed 2 rounds and I have 4 more to go.  The worst part only lasts about a week, but it is grueling.  I look forward to a clean MRI report when I go back into my favorite machine in a few weeks ;-).  I pray that I never have to take that damn poison after the 6th round.  I need these tumor cells to go dormant...forever.

I feel everyone's love and prayers.  I have the best family, friends, and co-workers.  Have a wonderful, and restful summer.

Chemo Sucks...Just Saying!!!

Jon finished his first round of chemo this past Sunday night, Mother's Day.  When he went on chemo the first time in 2012 after the initial recurrence, the oncologist told us 95% of patients do very well on Temodar with little to no side effects.  Jon did okay during the first two rounds, but the third round, my birthday weekend, kicked his butt.  Let me share how it works...For five nights, Jon has to stop eating for at least and hour before getting the meds.  One half hour before taking chemo he takes anti-nausea meds.  Then, I put on latex gloves (the chemo poison cannot to come in contact with skin) and place the pills one by one in Jon's mouth.  Twenty-three days later he does it all over again.  That third, butt-kicking round changed everything.  A few hours after swallowing the pills, Jon woke up violently ill.  It was awful.  Really awful.  Gut wrenchingly awful.  To see him so sick, fearful, overwhelmed...  Then, a knock on the bathroom door and two scared, small children standing together asking what was wrong with Daddy.  A snapshot etched in my mind forever.  Jon threw up for the next several hours.  I called Sloan to find out what to do.  Wait.  Wait till he stops vomiting.  Wait till he can keep the anti-nausea meds down again.  Wait till the hell that was this moment in our lives stopped.  It felt like an eternity.  It wasn't, but it felt like it.  That moment changed our lives and the "chemo process".  With nine rounds still to go, our routine changed.  Jon and I spent each one with a bucket close by, sleeping downstairs.  He despised chemo, becoming depressed a few days before and feeling sick for many days after.  It was a struggle just to feed him, keep him hydrated and help him stay positive.  Well, here we are again.  Jon's mindset going into surgery was positive this time around, but chemo remains a daunting task.  He has six rounds.  The first one already brought on nausea and appetite issues.  For me, the most painful part is watching Jon try to prepare himself to swallow those horrid pills.  The struggle to get them down, the fear etched in his face, the way it impacts the whole family.   The psychological, emotional and physical challenges are exhausting yet he knows there is no choice.  So he does it.  We do it.  Those moments late at night, when it's just the two of us against the chemo are some of the toughest.  But together, we are stronger.

Coincidence?

So...those of you who have been reading the blog regularly may have noticed that I left you hanging at the end of last Thursday's post.

Last Thursday, we went to BJ's to pick up some items for the house.  At one point, I walked over to the clothing section to look around.  While browsing, I noticed a gentleman walk to the left of me and begin looking in another section of clothing.  After a few minutes, he spoke to me and I couldn't hear/understand what he said so I asked him to repeat himself.  After he said it again, I still couldn't quite understand him, but I heard enough to figure out that he was making a comment about the jacket I was wearing which has the MSKCC(Memorial Sloan Kettering Cancer Center) logo on it.  I believe his comment was something like "I know that place well."  As he said this, I noticed some type of scar on his head.  I took my hat off and showed him my scar and said, "brain tumor?"  He said yes and described the type of tumor that he had/has.  His tumor is a Glioblastoma which was surrounded by an Astrocytoma and an Oligodendroglioma (Unfortunately, I know what these are!).  Jonathan told me that his surgeon had to remove most of his right Frontal Lobe.   He is currently 12 years post-surgery and regular MRI scans are all that is necessary.  I was amazed at the success he has had during the 12 years.  Knowing what I do, the Glioblastoma alone could probably have killed him within a year or two. He is certainly beating the odds. We spoke for another minute or so before we wished each other luck and moved on.

How could it be that he and I just randomly met?  This was no coincidence.  I think I was supposed to remember to keep everything in perspective.  Jonathan has, I'm sure, outlived the statistics and his doctor's expectations.  As I begin the first of 6 Chemo cycles tonight, I will keep Jonathan in my thoughts and prayers, and I will use his story to give me the strength to get through this.

"This Little Light of Mine"

This is a post from a blog that I follow called, "This Little Light of Mine"  The blog's author is, Whitney Cox.  She is 27 years old.  Whitney is married with a 6 year old and an 8 month old.  Whitney has stage IV metastatic cancer.  She writes inspirational posts full of faith, hope, and love.  I often find messages in her posts that teach and encourage me as I continue my journey. This is her most recent post, which reminded me how powerful and debilitating fear, negativity, and despair can be.  I encourage you to follow her blog also.  She is amazing.

"When I started this fight my sole purpose for survival was to be here for my family. After speaking to many other cancer patients and survivors over time, it has become so much more than that. I want to be an example. I want to be for someone else, what so many are to me. I'll explain. When I was first diagnosed, I felt absolutely hopeless. It could have very well drove me crazy, the thought that this disease was going to kill me in such a short time. Just knowing "what" was going to kill me was enough to make me miserable. I was not the least bit positive. I was terrified. I hope I never forget what that feels like, because I realize how incredibly blessed I am to have HOPE. Just to be able to let go of that fear, to let go of that despair, is a miracle in itself; a precious gift from God. Not everyone can let it go, which is totally understandable. Saying that it's hard, is the understatement of the century. It can very easily take over every aspect of your life, every thought. My heart breaks for you, if you are living in fear. But if I can give even a glimmer of hope to you, my friend, it is such a blessing to me. It gives me so much purpose. I've had so many survivors share their testimony with me, and each time I thought..."Wow, if God saved them from THAT, surely He can save me too." Sometimes, that hateful little voice was there whispering, "but your liver"..."6 months"..."not curable"..."it's not the same." Let me tell you! The devil is a LIAR. He wants to see you cower in fear! But GOD is BIGGER. Bring your fear, bring your despair, and lay it down before your Father. You don't have to carry the weight of the world on your shoulders. Jesus carried it for you on the cross, and by His wounds we are HEALED."  -Whitney Cox (This Little Light of Mine) http://whitneycox.thislittlelightofmine.net

2 Weeks Post-Surgery!

Hi All,

I stole the blog back... at least for tonight!  First of all, I have no words to express how amazing the outpouring of love, support, prayers, and gifts has been.  Thank you would never even come close in satisfying my feelings of gratitude toward each and every one of you.  I have spent the majority of my days and nights in the den, which is covered with all of the cards, posters, and balloons that I have received.  Yesterday, after getting a fresh head shaving (makes it easier to care for the incision), I reluctantly made the decision to stop at work.  The time happened to coincide with our monthly Administrative Staff Meeting.  In walking in with Sue, my 30 or so colleagues applauded and were very happy to see me.  This type of experience is very uncomfortable for me.  I prefer to fly under the radar rather than have all of that attention directed at me.  Regardless, it was nice to see everyone.  I didn't hear anyone say that the Music and Art Department has been cut, so it's all good! ;-) We made a stop the High School, where my office is located.  After spending about 1/2 hour visiting with my Secretary, Christine, and the music staff, I began to feel exhausted and needed to leave.  Following one additional stop, we came home.  I ate some lunch and crashed on the couch for a nap.  I definitely have the desire to be out and about during the day, but it's obvious that I have a long way to go in building my strength physically and mentally to get through the day.

Tomorrow will begin with my Oncology appointment at MSKCC in Commack.  We expect the discussion will be centered around post-surgical treatment.  Is the plan to begin Chemo-Therapy immediately?  Will Dr. Nolan want to wait to see a future MRI scan first?  Dr. Nolan has proven to be unpredictable at times with his treatment plan, so we will prepare ourselves with some questions.  

Tomorrow, I'll write about a chance (or not) meeting with a gentleman at BJ's that I had today.  God is always working in my life and this was quite an example.

Parents

There are many heroes who support Jon and I as we face the challenges that accompany his diagnosis.  Four in particular have shown amazing faith and courage...our parents.  My parents were in town to celebrate Maggie's 5th birthday the weekend we found out Jon had a mass in his brain.  I can still remember walking through the front door in a haze from the MRI.  Jon was practically catatonic, sitting and staring into space after receiving the life altering news from me just minutes earlier.  He made sounds that I hope to never hear again...anguish mixed with terror, grief and shock.   Those sounds will never be erased from my memory.  Like a movie playing in my head,  I see my parents in the backyard playing with our children.  I walk outside, saying the words while they look at me with disbelief.  I return to the house, get the phone and go to the corner of the yard to call Jon's parents, who were in Florida at the time.  It was by far the most difficult call I have ever made.  I could barely utter the words.  In those early moments, when our world came crashing down, our parents, in their own tailspin, started holding us.  Jon's offered to call his siblings and quickly made plans to return home.  Mine took over caring for Maggie and Tom, while we grappled with what was ahead...still so much unknown.  Although my parents left in the wee hours the next morning to return home, they held me close and promised to be back whenever and for whatever we needed.  The week that followed was a whirlwind.  Jon's parents drove us to the city for doctor appointments while mine made arrangements to return to Long Island to care for the kids during my stay in the city for Jon's surgery.  From that first moment, our parents have never let us go...they are steadfast; cooking, cleaning, repairing, listening, praying, encouraging, questioning, guiding.  As parents, Jon and I never want to see our children in pain.  I can't even begin to fathom the agony our parents felt and continue to feel each time we face yet another obstacle...surgery, chemo, seizures...  Yet they never make it about them.  They continue to support us... Their love is infinite.  Our parents, with their 95+ years of marriage between them demonstrate how to be strong as partners and parents.  I don't think there will ever be enough words to thank them for the many gifts they have shared with us.  I just hope they know how much we love and appreciate them.  We are truly blessed to have them in our lives.