Tag Archives: Survivor’s spouse

You and Me

As a brain tumor survivor, I feel lucky and blessed to be alive.  I have been fortunate enough to return to work, getting to go out with friends and family and live my life worry free (for the most part).  But what I sometimes neglect to reflect upon is the stress and burdens placed on my primary caretaker, namely my loving and caring wife, Ashley.

ashley_chris_406I appreciate and recognize the struggles that she experienced, as well as the hardships that she will continue to endure as my primary caregiver.  While I am not in her shoes, it is only natural to worry.  And everyday, Ashley and I each find difficulty in managing our lives and finding happiness with all that we have going on such as finding success in our jobs, financial pressures, affording a quality of life with the rising costs of healthcare and simply juggling the added stresses of everyday life.  All of this sounds like a recipe for mental exhaustion.   Whether she experiences these stresses, I do not know as she has never told me, but I would not blame her for needing an outlet of her own.

Her and I both know that, for the rest of my life, I will have to continue to get yearly MRIs and be alert for changes to my cognitive functions.  Just because my tumor was removed and I am now “cured” in clinical terms does not guarantee success.  As I alluded to, a brain tumor diagnosis is a chronic issue.  Additionally, as previously stated, I am on anti-seizure medicine and likely will be for the rest of my life, but hearing her ask “Do you have any idea what it’s like for me to worry that every time you get in the car, you’ll have a seizure and I won’t be there to grab the wheel?”  destroys me.  However, the unfortunate truth is that I had a brain tumor and am on epileptic medications does not mean that I stop living; rather, I must and will carry on.  And for her, this means that she will unfortunately need to be burdened by these unintended consequences.

Just this past January, she took time off from her job to be with me as I recovered from surgery.  The comfort of knowing that she was here, in the house to guide and assist me in the recovery process was healing in and of itself.  Hearing her voice throughout the day was so comforting and kept me at ease.  From “I just can’t believe how good you look!” to “I’m so proud of you, you’re really doing great!” was music to my ears.  Always having her genuinely concerned was such a gratifying feeling, but I have come to expect nothing less from her.

As I learned throughout the years, there is a silver lining to all of this, and that is that I now that I will have her by my side as a source of comfort and support, and this simple fact makes me feel a thousand times better.

This is just the start for us.  Last year, we added our pride and joy Coddington to our family.

IMG_0913He could be the most energetic and playful dog I have ever encountered and brings just another smile to our faces (except when he chews holes into the couch), and I cannot wait to see what the future holds in store for us.

While I sincerely hope that the worst is now behind me, I cannot be certain but at least I can find comfort in knowing that if something were to again occur, I have the best caretaker ever right here with me.  In 2008, a few days after my second surgery for the hematoma, my parents brought me my phone so that I can read the abundance of messages from family and friends.  Yet, there was one email that stuck out to me, and that was from Ashley.

The email was simple, yet full of love and compassion.  She offered me the hope, spirit and drive needed to get better and recover.  If words could talk, these would be yelling.  Though I hated the fact that I could only lay in my bed while she visited, she saw something different.  I was not expecting to see the words “proud” and “brave” after our visit, but I did.  I was filled with joy when i read down further and saw that she wrote she’d like to come visit again soon, so long as I was okay with it.  To have the girl that I loved tell me after seeing me in such a grave state tell me to keep smiling and that she loves me made me the happiest guy ever.  From that moment on, I knew that I needed to get better and continue improving.  I was so disappointed that this had happened to me and I was lying in a hospital bed not knowing when I would have the opportunity, but I was determined.

Seven years later, I can say that I did it.  I am through the worst, but know that none of this would have been possible but for your support, guidance, friendship and love.  This is our story.

“You and me together, we could do anything, Baby
You and me together yeah, yeah
Two of us together, we could do anything, baby
You and me together yeah, yeah
Two of us together yeah, yeah
Two of us together, we could do anything, baby”

Thank You For Being A Friend

“In sickness and in health.”  Little did I know, a year-and-a-half later, the impact that this phrase would have on my life.  As I headed back to work this morning, I was emotional – overcome with emotion that I had been nursed back to health and able to resume living my life as I had previously.   I am grateful beyond words for all of my caregivers, but especially Ashley.  Over the past month, you have shown me the true meaning of love and what marriage is all about and I could not ask for anything more.   Thank you for all of your support, guidance and encouragement – I love you!

“3 Soldiers Attacked with a Knife in France”, “100 Bodies Found in Police Station”, and “Taking Selfies Likely Caused Plane Crash”; three real-life news headlines from this evening.  If it bleeds, it leads and if you pay too much attention to the ever-present media, the world can seem like a dark and dangerous place.  In today’s world, it’s easy to fall prey to a negative outlook.

When Chris’ surgeon walked in the room to advise us that he would need yet another brain surgery, my heart sank.  While it could always be worse, my anxious self jumped to the worst possible headlines: “Chris Unable to Speak or Function After Brain Surgery” or  “Surgeon Finds Cancerous Tumor Cells After All”.  As humans, we try to remain positive when life throws obstacles in our way.  As caretakers for someone suffering from an illness, we attempt to remain strong, but it’s difficult to not feel defeated or consider the what-ifs.

Despite all the negativity, anxiousness and downright scares that Chris’ new surgery brought, one positive theme emerged: human kindness.  The minute people found out the news, I was overwhelmed with hugs and true concern in the eyes of family, friends and co-workers.  Dinners were prepared for us, visits were made, care packages and cards with inspiring quotes were sent.  photo 1(2)During the surgery, at my most vulnerable, I received countless messages sending love, encouragement and all the luck I could accept.  I was simply uplifted.

While I believe it is important to stay strong and tough on your own, it’s in others’ compassion that we find strength when we need it most.  As a person who needed to be someone else’s rock, it was you that helped me persevere.

photo 2(1)So thank you – all of you – for reminding me to ignore the headlines and to remember that good in the world truly does exist.

It’s A Beautiful Day

Fall is my absolute favorite season.  Humidity gives way to crisp air, trees transform to an array of stunning colors and then there’s the food… enough said.  Aside from all that, fall serves as a subtle, beautiful reminder of the transient nature of life – all that lives eventually dies.

Lately, Chris and I have heard many stories of people suffering from brain tumors that haven’t fared as well as him.  Hearing these heartbreaking stories leads to such a heavy feeling of survivor’s guilt.  Why did Chris survive and other worthy, amazing people have not?  Was it divine intervention or just pure luck?  I’m not sure what I believe, but I often wonder if we are living our lives as we should considering the enormous gift we’ve been given.  Perhaps we should be experiencing every ounce of life we can – going on African safaris, skydiving, volunteering as much time as we can to those less fortunate.  Can the way we live our everyday, middle class America, 9 to 5 life ever be enough to say thank you for the gift of life?

The fact of the matter is I’ll never know why Chris survived and the alternative will likely forever haunt me.

In terms of survivor’s guilt though, I think I do have an answer.  While driving to work this morning, I opened the sunroof and commented to myself on how it was my favorite type of autumn day …and then it hit me.  We don’t need to win a Nobel Peace Prize or travel to some far away land to really live.  To do justice to those who haven’t survived, we just need to live it well – no matter what we’re doing.  So do me a favor today.  Take all of your everyday experiences and try to make it worth something.  Smile more.  Laugh until your belly hurts.  Really taste that morning coffee.  Do something nice for someone just because.   Life doesn’t have to be “big” to be wonderful and fulfilling.

Take joy in all the simple things for those who can’t.

Submitted by Ashley Cusano

I Am The Luckiest

When I went out to Rhode Island to begin law school five years ago, I was alone and determined to begin my quest to achieve my dream and make new friends.  But little did I know that I would spend most of my off-time with my best friend and the girl I would wind up marrying.

Ashley, my amazingly supportive wife, wrote this next entry.   But for law school, there is no chance we ever would have met each other as we lived two-and-a-half hours apart.  But as destiny would have it, we lived on the same street during our 1L year and were in the same section for classes that year.   I can go on and on, but I’ll tell just this one story – maybe some foreshadowing of what was to come?!

As finals were approaching in May of 2008, my roommate, Ashley and I went to a bar for one last good time out and we  played darts.  Ashley and Joe both nailed the board and of course, my dart is way off to the right.  The two of them are cackling and I’m trying to figure out how to explain this.  Well…when I used to have too many “sodas”  at the bar, the double vision would return and thus the reason my dart almost took someone’s eye out.  So I explained it to the two of them and looked at me like I was crazy.

Real crazy, huh?!  But I digress…

I haven’t heard him shuffling around the house in a while.  He hasn’t had a seizure downstairs has he?  I picture him passed out on the floor, or worse yet, he could have hit his head on the way down.  I find an excuse to go downstairs to check on him.  Was that a facial twitch?  Did he just slur that sentence?  Why doesn’t he remember that I told him that story yesterday?  It can’t be growing back, can it?  Is it genetic?  Should and will we be able to monitor our kids for it?  Is that a red line on his chest, could his shunt be malfunctioning?  Does he have his shunt information in his wallet?  What if he has a seizure while he is driving, what’s my plan of action to take control of the car?  Should he be driving by himself?

I am a survivor’s wife, and these are the thoughts that flash through my head on a daily basis.

I have never told him about the extent of my concern (though I suppose now he knows – hey, hi!).  Granted, I am a worrier by nature, but I have to imagine that most spouses deal with similar fears and thoughts.  When the fears come rushing in like a bullet train, I force myself to slow down and think back…

Chris and I met during our first year of law school in the fall of 2007.  I doubt that the well-dressed, Yankee-loving Italian guy thought he would end up at the altar with an Irish-freckled, Boston tomboy donning a Red Sox hat…but life is funny like that.  The lines between friendship and something more had just started blurring when Chris was diagnosed with his brain tumor that summer.

Another law school friend and myself went to visit Chris right after his first surgery.  We knew he was unable to fully communicate with us, so we weren’t expecting much other than just being able to see for ourselves that he was okay.  Throughout the previous year, Chris and I had a running joke about how someday I was going to make him a Build-A-Bear.  He basically told me that he would rip it up and flush it down the toilet if I ever did.   I figured this was the perfect time to make good on my promise, and I made him his very own bear.  When we walked into the room, he couldn’t say much of anything, but I watched his eyes catch the Build-a-Bear box, and a wild look of anger crossed his face.  I was never so happy to see someone so mad – it meant he was still in there somewhere.

Even though his stuffed animal anger brought me hope, things got worse before they got better.  On our way back to the hospital the next day, my friend and I received an anguished phone call from Chris’ sister.  “Something’s wrong with Chris and he’s having emergency surgery, you probably shouldn’t come.”  We turned around and had the most worried, silent drive home to Rhode Island.  He survived what we later found out was a life-threatening infection.  I spoke with his sister after the surgery and I can still hear what she said to me: “My brother and I had to rush to the hospital to say goodbye because we really thought we were losing our brother”.   Now, every time I watch Chris together with his siblings, breaking each other’s balls and laughing, or when I see him holding his nephew, I think back to his sister’s haunting statement, and it always brings a tear (albeit a happy one) to my eye.

The months after brought a few more visits.  Verbal communication was almost impossible, and the frustration as he tried to say something he was thinking was palpable.  I would tell him stories and although he couldn’t respond, I could tell he understood by his facial expressions.  He called me on my birthday that year and tried to say “Happy Birthday”.  Such a simple phrase, and he struggled for minutes.  I sobbed after I hung up because I was equal parts heartbroken for him and just honored that he would try so hard for me.  I resolved to wait for him, because I knew he would be back…and a few months and a miracle later, back he was.

So when the worry monsters attack, I try to take a big step back and remind myself that I am lucky that I am even in a position to worry about him and the future.  I am lucky he can respond to me.  That he can actually go to work and tie his own shoes.  A good friend’s sister was just diagnosed with an inoperable brain tumor.  I couldn’t stop crying for her.  For everything her family is going through and for the fact that we are so god damned lucky.  I’m not a religious person, but I have to believe there’s a greater purpose for all this – for why Chris pulled through miraculously.   So when I step back and reflect, I realize that maybe my worries are really just blessings in disguise.