1st Week of Treatment

So, Friday I completed the 4th of 30 radiation treatments.  Thus far, it has been uneventful.  When I am brought to the treatment room, I lie down on the table.  Sara, or one of the other techs, guide my head to the table.  They properly position me and place the cast mask over my head and snap it down onto the table.  Although I'm curious as to the function of each part, and will probably ask at some point, there are many moving parts of the big contraption.  They move around my head throughout the treatment.  There's no mistaking, however, the 10, or so, second intervals when the radiation is actually being administered.  It is at these times when I have decided to pray the Hail Mary to myself and visualize a bright white light entering the top of my head and disintegrating the tumor cells.  I have faith that the help I'm praying for is being given, but it is also very comforting to me psychologically, and it gives me something positive to focus on, rather than the side effects that are likely to come over the next several treatments.  I've been told to expect hair loss on the right side of my head, the skin will become very sensitive, dry, and itchy, similar to a bad sunburn.  I may have headaches, and increased fatigue, will almost certainly become an issue.  Although these are short-term effects, I worry most of the longer-term.  Will I notice cognitive deficiencies and how will this effect me?  Even prior to this recent course of treatment, there are times of, what I call, extreme short-term memory issues.  This means that the thought that had entered my brain of what I wanted to do or say is gone in a matter of seconds.  It is very frustrating and embarrassing at times.  Word retrieval can also be an issue, but not as frequent.  Will any of this get worse, and will there be more cognitive effects?  We'll have to wait and see.  Of course, the Doctor and nursing staff give you all of the details , with all of the possible side effects, everyone's experience varies somewhat, so I'll keep praying and hoping for the best....keeping in mind that THE BEST would be that the radiation and Chemotherapy completely kill every remaining tumor cell.

The Chemotherapy drug, Temodar, is no stranger.  I have been through a course of 12 monthly treatments and then another 6.  Although, my oncologist had told me that most people handle it very well...it still sucks.  I am certain that there are MANY other cancer patients that have much worse experiences with their treatments, however, I can only base mine on my own experience.  Temodar is administered in pill form.  It sounds pretty easy, but I hate every second of it.  The recommendation is to stop eating about an hour prior to taking it, take an anti-nausea pill....wait about 30 minutes and then take the Temodar.  This is recommended because sleeping while the drug is most active would help with nausea.  All of this makes sense and isn't a big deal, but the hour or two leading up to it sucks.  Physically and Psychologically swallowing those pills is the worst.  I'm not the best pill taker to begin with, so this is difficult.  When going through the traditional Temodar cycles, I'm given five evenings of pills.  Following this, I'm off for almost a month before the next round.  It's been helpful that I'm able to talk myself through the five nights, by thinking, "ok, only 3 more nights....etc"  During radiation, I am being given the same Temodar, however, the dose is lower.  Sounds great, except I have to take it each and every night.  There's no looking forward to being finished with a round.  The "round" isn't finished until the radiation treatments are.  Worse than that...a month following the radiation, I go back to 6 of the traditional cycles of Temodar.  Needless to say, I am having a hard time wrapping my head around how I'm going to get through this.  We're talking January before this is finished.  It's depressing and I'm having trouble finding something external to focus on to get me through.

JML

Footprints

I'm sure there are few who have never read this wonderful poem.  It's one that I've thought about on an almost daily basis.  It is such a comfort in those times when I feel helpless, and even a few times, hopeless.  I've often heard stories of people going through challenging life circumstances, where they are characterized, by never having said, "Why me."  Although I'm not proud of it by any means, I definitely have moments of, "Why me."  It can be a very easy place to go, and it is a very lonely place.  One may even wonder if what they are going through is some kind of punishment.  As both of my children have certainly said when being reprimanded, "It's not fair!"

For me, this poem provides a crystal clear visual image to focus on.  My choice would certainly be to remain in a place of defiance, where my thoughts are "I'm going to kick this tumor's butt," and the like, however, there are times when I can't.  When I'm stuck in that lonely, helpless, or hopeless, "Why me" place, the image of being carried is so powerful and comforting.  Even though we may be years removed from our childhood, we still have that need to be carried.  It's the ultimate support and comfort.  When I am at those lowest points, and I visualize the one set of footprints in the sand, there is no doubt that He is carrying me and will never let me walk this path alone.

-JML

Walking...

"Faith is not the absence of fear, but the courage to walk through it."

We are walking...thank you for walking with us. 

Go Fund Me...

Every time I go on facebook, I see Go Fund Me pages in support of various different people.  All of them have stories, events in their lives that have brought them to a place of need.  Two weeks ago, a co-worker asked me if we needed a Go Fund Me page.  I hadn't really thought about it, but quickly replied no.  Then, as we prepared for Jon's surgery, people kept asking us what we need or how they can help.  Well, to answer the question, yes...I want a Go Fund Me page, but I don't want money.  I want a fund of sunshine, so when the days are cloudy and Jon can't find the light, it's there.  I want a fund of smiles, so when Jon's eyes are sad, I can pull out a smile to brighten his face.  I want a fund of energy, so when Jon is worn out from treatments, he can still play catch with the kids.  Realistically, we have those funds...they are the cards, notes, calls, messages, and dinners that show up when we need them.  We know there are going to be really hard days, but those funds, the kind worth more than any amount of money, are the sunshine, smiles, and energy we need to face another day.   Thank you...for giving us just what we need!

Never in our wildest dreams...or nightmares

Morning of surgery

Day after surgery

Welcome Home, Daddy!

It's been a while since we've updated Jon's blog.  The last time you heard from us, Jon was nearing the completion of chemotherapy at the end of September 2015 and preparing for the National Brain Tumor Society Long Island Brain Tumor Walk with his team Tumor Tacklers.  We raised over $11,000 and walked with 80+ team members who showed up to support Jon in his fight.  November's MRI showed a stable tumor and we went into the holidays with relief that treatment was behind us and excitement over planning a first time trip to Disney the following fall with the kids.

Jon's scan three months later (February 2016) showed that the tumor was growing again.  We left the oncologist's office in shock, but hopeful that the MRI in four weeks wouldn't show any more growth. Jon got the flu, so the MRI was moved to six weeks later.  As much as we tried to prepare ourselves for the appointment, we weren't prepared to hear not only that the tumor had grown in those six weeks, but that Jon would immediately begin radiation/low dose chemo followed by 6 months of high dose chemo.  We left the appointment knowing the oncologist had reached out to Jon's surgeon, but he thought it was unlikely that surgery would be an option.  The next day, we were told Jon would be having his third craniotomy, just one year after his last one.

Once again, our world was turned upside down...the next week was spent making arrangements at work, going to doctor appointments, celebrating Tom's 9th birthday and worst of all, telling the kids.  Their responses were appropriate...anger, sadness, fear, anxiety.  They felt all the same things we were feeling.  All the things we didn't want to say out loud because if we did, we might fall apart.  There is no time to fall apart...just brief floods of tears followed by getting back to business as usual.  Survival mode...

On April 26th, Jon underwent his third craniotomy with Dr. Gutin, chair of neurosurgery at Memorial Sloan Kettering.  While last year, his mood was determined and positive, this time, Jon seemed defeated and lost.  His smile and shining eyes filled with worry and fear.  Somehow, this time felt more like the first one all over again.  Jon was in surgery for almost 7 anxiety filled hours.  After three days in the hospital receiving incredibly compassionate care, he returned home to the loving arms of Maggie and Thomas.  Now, he focuses on recovering from surgery and prepares to start radiation and chemo as planned.  His smile is still rare, but he puts on a happy face for visitors and phone calls.  You see, the road ahead is daunting, knowing he will feel tired and nauseous, struggle with eating and trying to grow his hair back, being the dad, husband, friend, son and co-worker he wants to be.  For now, we are trying to take it one day at a time...as best as we can.