Long Time, No Blog!

It's been a while, so I thought I'd catch the readers up on my progress.  I've finished 18 of 30 radiation treatments.  I haven't experienced much in the way of side effects.  The hair on the right side of my head is definitely starting to go, but that was expected.  The only real symptom has been fatigue. It's hard to know how much of that is from radiation, or still from surgery or the medication.  It's probably all of it.  I have been trying to push myself by walking longer distances.  With regard to work, I've been going in for about 2-3 hours a day, before and/or after radiation treatments.  When 

I get home, a long nap is usual.   

Prior to surgery, I had lost about 15 pounds.  After surgery, I gained it all back and then some due to the steroids that I am taking to avoid swelling.  Now that the steroids dose has been lowered  and the Chemo side effects have kicked in, eating has become an issue.  The Chemo causes nausea at times, but it seems like eating helps  This seems like an easy fix, except, finding something that I would even consider eating is a problem.  When I find something that works one day, I may not want to even look at it the next.  It is very similar to being pregnant, so I'm told.  There are days that are tolerable and others, like yesterday, where I can barely get off the couch.  

Things in the house have been difficult.  Last week, Thomas had Strep throat and Sue spent last night, throwing up, due to an apparent virus  We've been spraying Lysol and staying away from her, hoping that the rest of us, especially me, don't contract it.  My immune system is compromised due to the radiation and Chemo, and I really don't need to get sick.  

So, I guess that sums it up at this point.  I push ahead and try to keep positive.  During the radiation treatments, I pray and visualize a bright white light coming down from heaven killing each and every tumor cell.  Thank you for all of your prayers and support.  Please keep them coming.  

It's late, so please excuse any grammatical errors!  :-)

The Radiation Suite

The "Radiation Suite" at MSKCC is an interesting place.  The decor is soothing and the smiling faces behind the desk welcoming.  Since Jon goes five days per week for six weeks, faces become familiar quickly.  The staff and the patients...there are lots of patients.  There is something comforting about being there.  The glances you receive are filled with knowing and compassion.  Jon may not notice all these things because he is focused on getting through the treatment, battling the anxiety and fighting to stay afloat in the abyss of his diagnosis.  I notice the faces.  I hear the stories.  There is a woman in a sling who falls asleep easily and struggles to get out of her chair when called for treatment.  Her hair is growing back following chemo treatments and the soft-spoken man calling her name sits with her, comforting and assisting as she stands to walk toward her radiation room.  I pray for her.  There is an elderly man in a wheelchair with his adult children.  He can't hear well and at times struggles to breathe, so they pound on his back and call his name.  I pray for them.  There are two women who come with candy and drinks to surprise their friend who has both radiation and chemo.  They laugh and hug and celebrate their friendship.  I pray for them.  There are a husband and wife.  Her bald head is covered and she appears drawn and tired.  Her husband rubs her back and stares into space.  When she leaves for treatment, he slouches in his chair, rubs his face and closes his eyes.  I pray for them.  Those are just a few of the people I see that come in and out of the revolving door of the radiation suite.  They are part of the MSKCC family, our family.  They didn't ask for this.  They don't want it.  They do it because they have no choice.  Some of them may not be alive next year or even next month.  Some of them may finish treatment and never come this way again.  I pray for them because regardless of the outcome, their lives will ever be the same.  I pray for them because I understand.  We are forever changed by this journey, some for better, some for worse.  I pray because that is my power...

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.

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.

Petal

It was date day...the term we affectionately call our trips to Jon's doctors.  I drove to the city while Jon slept and drove home while he slept...keeps me from having to share the radio!  In between, saw his hero, Dr. Gutin, who seemed very pleased with the surgery and how Jon is doing.  We also saw Petal, his nurse, who gently removed 46 staples and several stitches from Jon's head.  She is new to us, joining Dr. Gutin after Patsy, his previous nurse, retired.  We loved Patsy.  She was kind, gentle, honest and thorough.  Petal is similar.  She was a nurse on the 7th floor for four years, Jon's post-surgical home after both surgeries.  We talked fondly about the other nurses (especially Lisa and Mary Ann) and staff we encountered.  We also chatted about her decision to switch positions to join Dr. Gutin and her enjoyment of following patients for a longer period.  Before we hugged good-bye (she's a hugger) we had one question for Petal, " How do you do this job everyday knowing that some cases are hopeless."  Her answer was simple, "We do it for you."  It was one of those heart in my throat moments.  We could only say thank you.  Thank you for showing up.  Thank you for sharing your skill.  Thank you for doing it for us.

Dealing With It

I saw this quote and it made me think of my sweetie.  6+ years and counting.  Some days tired, some days sad, some days scared, some days great.  Everyday dealing with it!!!  Keep dealing with it, Jon!  You're worth it!  We're worth it!!!  Love you more than you know...

"Dealing with it is the operative word.
I found myself at seven years not battling it.
Not struggling with it.
Not suffering from it.
Not breaking under the burden of it, but dealing with it."
- Michael J. Fox referring to his Parkinson's Disease
Barbara Walters interview, 20/20 December 4, 1998

Perspective

So much about life is perspective.  Perspective evolves...time, place, emotion playing a major role.  Jon and I have had many conversations about this, especially after spending time at Memorial Sloan Kettering Cancer Center.  Seeing people in wheelchairs, with IV poles, and masks covering their nose and mouth is part of the norm.  There are elderly and young, parents, siblings, spouses, children and more.  There is no discrimination.  It is a sobering experience.  We maintain perspective about how blessed we are when considering the journey of so many others.  However, our perspective sometimes stirs feelings of guilt.  Guilt because Jon is surviving.  Guilt because he had a tough day.  Guilt because we complained...  We alleviate that guilt by qualifying what we feel with phrases like, "I know it could be so much worse" or "There are other people who have a much tougher fight".  True?  Absolutely...  Maybe when we consider our perspective, we should do so without judgement.  At any given moment we may have the perspective that life is a  struggle.  The gift we give ourselves is to accept that perspective, knowing we won't stay in that place long.  No qualifications.  No self-recrimination.  A moment of perspective that will pass, replaced by another and another and another.    

In the Moment

Jon is a rock star!  He is ready to go!  Bring it on!  Well...let's revise that thought.  In his mind, Jon is ready to tackle the world.  HIs body, however, has a slightly different plan .  We tested his endurance today and, after visiting with a friend, making breakfast, showering and shaving, he crashed...flat down on the couch.  We had a good laugh as I reminded him he just had brain surgery a week ago!!!! Hello!!!!   Isn't it often true that we push ourselves beyond our limits to accomplish a goal, meet a deadline, prepare for what's next.  Sometimes that's a good thing, but sometimes it's important to slow down, breathe, appreciate the moment, be thankful, rejoice.  As you may know from reading earlier blogs, Jon hated chemo.  Quite honestly, it sucked.  We both know it's coming, maybe a week from now, maybe several weeks from now.  But...in this moment it is not a part of our lives.  In this moment we have short walks hand-in-hand, breakfast together and extra snuggle time.  We have each other.  So rather than looking ahead, anticipating, let's practice every day to be in the moment, rejoicing because it's a gift.  Let's open and appreciate that gift before it passes by.  It won't ever come our way again...

Roller Coaster

One week ago today, Jon had his second craniotomy.  As we move forward in his recovery and prepare for chemo, I started thinking about the roller coaster we have been on since I heard the words "Your husband has a mass in his brain".  Jon didn't know.  He was still in the MRI.  I told him.  I told our families, friends, coworkers, insurance companies, doctors...over and over, "Jon has a mass in his brain."  Our daughter was five, our son was two.  A week later, in a little conference room at Memorial Sloan Kettering Cancer Center we waited for the neurosurgeon to update us after Jon's surgery.  I hated that room.  It was small and stifling.  Once the doctor spoke to us, I cried.  I didn't feel relieved, I felt depleted.   I will never forget those moments, just like I will never forget two and half years later when the oncologist said the tumor grew and it was time to start twelve months of chemo.  More tears, more phone calls.  Feeding him chemo pills and anti nausea meds.   Searching for foods he could stomach.  Picking up shattered pill bottles when he smashed them with a bat after his final round.  A victory!!!  Then, a shrunken tumor and eight blissful, months of no seizures.  Some days went by without us even thinking about the tumor (we actually had a conversation about it).  In an instant that changed.  Jon could barely get the words out, "I had a seizure".  He cried.  I cried.  We knew.  This past September's MRI confirmed new growth on the tumor and the next several months were spent watching and waiting.  Maybe that's why we felt such relief when we could finally act.  Maybe that's why this second surgery was a blessing.  Action gives us a sense of control over the uncontrollable.  And everything about this brain tumor is uncontrollable.  A friend said an interesting thing to me earlier this week after Jon's surgery.  "Not everyone understands that the hard work happens when you get home.  They go back to their lives and you continue to live this battle."  She was right...We are our truest selves at home, safe and secure, hidden from others.  We put our best foot forward when working, playing, socializing.  The tough stuff happens behind closed doors.  Fear, anger, sadness, guilt... Jon and I both feel those things.  We also feel joy, love, hope, determination...  So yes, this is a roller coaster and yes, some days it is hard.  There are many things I wish I could change, but I know for sure, I would never want to ride this roller coaster with anyone else but Jon.  When he is low I hold him and when I am low, he holds me.  We laugh together, cry together and fight together.  We said "For better or worse, in sickness and in health" on July 31st, 1999.  We have been tested, we have persevered and we will continue to ride this roller coaster together, hand in hand for eternity.  Put your seatbelt on...it's going to be a bumpy ride!