Love Is Stronger Than Cancer
Only a few months into our relationship, my husband (boyfriend at the time), had his second occurrence with brain cancer. Almost a decade of battling the disease and all that goes with it, here is our journey...
When I was single in my early twenties, I loved to daydream about my future husband. I remember feeling excitement just imagining what type of man I would spend my life with. Will he be outgoing? tall? funny? athletic? Of course I never thought to ask myself “will he have cancer?” We all face the unknown when starting our lives with someone, but for me it was what I DID know that was scary. I knew that I met my perfect match, but that choosing to spend my life with him also meant I was jumping on board with cancer, choosing a life full of fearful emotional struggles beyond my control. But when you love someone so much, is it even a choice? 10 years later, I look back on my journey and I can say I have no regrets. As cliché as it sounds, I am so grateful for every struggle I went through, because it has shaped my life in so many ways.
Where it all began....
I met Brian at a friends wedding in October 2004. We hit it off right away, dancing and flirting all night. He was handsome, charming, and made me laugh until my stomach hurt. After our first official date I knew our connection was real. We talked with ease like we had known each other for years, an emotional connection I didn’t expect from someone who gave me crazy butterflies, the kind that keep you smiling all night.
It was on our first "official" date when Brian openly told me that only a couple years back (at 26 years old), after battling intense headaches for months, an MRI showed a tumor the size of a golf ball on his brain. After seeing multiple doctors, the biopsies that were taken did not lead to a clear diagnosis. Luckily the doctor Brian chose was able to successfully treat the tumor with chemotherapy, and about a year later there was no sign of a tumor, and he was living a normal life. Not something I expected on our first date, but still, his story inspired me. I was drawn to our deep conversation and the outlook Brian seemed to have after going through something so scary. I was eager to get to know him more. We continued to date and less than a year later we were talking about moving in together. We were so happy, enjoying life as a young couple and looking forward to all the great things to come.
I will never forget the day in October 2005 when Brian met me after one of his routine MRI scans. It was about 6 months into our relationship, and every time we saw each other we would both light up with excitement. Instead of greeting me with a big smile as he always did, he had a fearful look in his eyes, one that I had never seen before. And then he said the words I was praying he wouldn't… the tumor is back. I remember my heart pounding out of my chest. Could this just be a mistake? A relapse already? All at once our future together flashed before my eyes….hospitals, chemotherapy, life being put on hold. At that moment I did everything I could to hold back my tears and said all the positive things we both needed to hear... that we would get through this together, that we would not let this defeat us. But inside I was also crumbling, shocked, and scared. Instinctively I decided to move into his apartment so I could be there for him 24/7, and life was forever changed as I know it.
This time around a clear biopsy confirmed a cancer diagnosis. Brian had Primary Central Nervous System Lymphoma, a type of lymphoma located in the brain. It is a very rare type of cancer for someone so young, usually occurring in patients in their 50’s or 60’s. They knew how to treat it, but the problem is the high recurrence rate. We were told that the small amount of research out there shows that when patients are not undergoing treatment, the chance of relapse is over 80%. And with Brian already facing a relapse at 28 years old, our future together seemed too difficult to process. I remember thinking about all the fun dates we had planned, all of them immediately put on hold. We decided to come up with "rain checks" for everything we had planned. Instead of cancelling plans, they could just be postponed for a while. We were trying to hold onto something.
The next 6 months or so went by in a blur. My life instantly went from carefree dates to scary hospital stays. Brian started high dose methotrexate once every ten days until the tumors were gone, and then he could move onto monthly treatments. Since the dose of his chemo was so high, he had to be inpatient for 5 or so days with each treatment, so the hospital felt like our new home. I was on autopilot, only leaving his side to work and sleep. I did everything I could to stay strong as I watched him change from the strong healthy man I knew, to the weak, sick cancer patient. I was petrified the first time I sat by his bedside and watched the bright orange poison slowly drip into his body, or the first time I held a bucket over his head so he could throw up, too weak to make it to the bathroom. Days would go by where all he could do was lay in his hospital bed in the dark, while I sat next to him with tears running down my cheeks, wondering how just a few weeks back we were living perfectly normal lives.
The love and support we received from family and friends was beyond overwhelming, and it had everything to do with how we got through this time. Both Brian's parents and my parents were our rock solid strength with their daily visits and never ending words of support. Our siblings would show up with anything they could think of to get us through the long days. Brian's friends were stop by with their humor and usual sarcasm to help us forget our heavy hearts.
With each miserable day of sickness that passed, Brian amazed me, choosing to only think positive, knowing he would once again beat this disease. We held onto our love for each other, and the happy moments that helped define what we were fighting for. Every night Brian would find the strength to walk me to the elevator to say goodnight, no matter how crappy he felt. He would call me his angel and kiss me goodnight, trying to end each day with a better hope for the next. My strongest memories of those nights are when he left me at the elevator, I would look back and see him walking to his room... alone, head down, IV pole in tow. It broke my heart every time.
More often were the nights where anger would hit me hard, when everyone went back to their normal lives and our impossible reality stayed the same. I would sit at the edge of the window while Brian would sleep, watching all the people walking by outside, enjoying the warm summer nights. We were young, we were supposed to be doing the same. We missed parties, weddings and events that we should have been a part of. I will never forget the first night I went home after Brian's first long hospital stay. The silence of the empty apartment hit me like a ton of bricks as I opened the door. Just the thought of Brian lying sick in his hospital bed tore me to shreds, and I just fell to the floor, pounding my fists and cried until I couldn’t cry anymore.
Finding our normal
As the treatments continued we grew to not only cherish, but celebrate the days when Brian was home from the hospital, because it was as close to normal as we could get. Since everything else in our lives was put on hold, those small precious moments that we used to take for granted became everything to us...fresh air, sleeping in our own bed, eating a meal together, taking our favorite morning walk to Starbucks when Brian had the strength... just being together.
After months and months of chemotherapy the tumors were finally gone. As happy as we were that the chemo had worked again, Brian’s ongoing treatment plan made it hard for us to get back to our normal lives. Brian’s doctor advised us that he should continue with treatments indefinitely to avoid a third relapse. All we could think about is that 80% recurrence rate when treatments stopped. It seemed impossible no matter which way we looked at it. How can you celebrate being cancer free when the treatments would never end?
At first when his treatments changed to every 3 months it felt like a vacation for us (in comparison to what we were used to), and we tried as hard as we could to return to our normal lives in between. But as the months turned into years with no end in sight, we felt stuck and depressed. It wasn’t just the chemotherapy that prevented us from living normally…it was everything else on top of it. It was difficult for Brian to hold a job because of his frequent absence and sickness surrounding his treatments and recovery. He often suffered from “chemo brain” and he lacked motivation and drive to keep up with normal daily activities. The black cloud of never ending chemo just seemed to follow us everywhere, and our positive outlook started to wither away. One night before a treatment I sat and cried to Brian, and the tears just wouldn't stop. I just wanted a normal life. I wanted to do the things that people our age got to do…get married, buy a house, start a family. I feared that we would never have those things because there was too much in the way.
Husband and Wife
Only months later Brian decided to make one of those things a reality. On a cozy weekend getaway in February 2006, Brian got down on one knee and asked me to marry him. Brian told me that he refused to let this disease keep him from doing the things he wanted to do, and that nothing would ever beat us if we were together. I remember just looking at him down on one knee, his hand trembling as he held out a beautiful diamond ring. At that moment cancer didn’t exist and all I could see was the man I loved asking me to marry him, and all that mattered is that we were together. Screaming yes and jumping into his arms, we finally felt normal again.
Despite the treatments every 3 months, we were able to have a very happy engagement and an even more wonderful wedding and honeymoon. But by the fall of 2009 the ongoing chemotherapy treatments, the fear of relapse, and the question of Brian’s long term health from ongoing chemo had led us to seek out another medical opinion. After a few months of searching we contacted a wonderful doctor at Dana Faber Cancer Institute, and we heard wonderful news. If he underwent a stem cell transplant, his chances of a relapse would go down significantly, and we could finally stop his ongoing chemo treatments. The decision was ours to be made, but to us it was a no-brainer. Even though the stem cell transplant was an extremely risky and scary procedure, we knew this was the only way we could finally move on with our lives. We did our best to gear up for what we knew would be the biggest battle yet.