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.
The biggest battle of all
Brian was admitted to the transplant floor at Dana Faber Hospital in January of 2010. We were both so nervous when we walked onto the stem cell unit for the first time. He gave me a sad look as I put on my mask and gloves to enter his small sterile room, his home for the next month. It felt so strange to be so shielded from my own husband, especially during a time when he would need me the most. But as scared as we were, there was a new light in both of us. This was finally the end of the treatments and the hope for a new cancer free future. When I got back home to our apartment, this time I didn’t fall to the floor and cry. I fell to the floor and prayed that this would be the last time I would ever have to see my husband go through chemotherapy again.
The transplant process was nothing like the chemo and hospital stays we were used to. Brian was unable to leave his room and the limited visitors he could have had to be masked and gloved at all times in order to keep a sterile environment. The first week Brian received the highest dose of chemo he had ever received, about 8-10 months worth in only 1 week’s time. This would kill all of his cells, most importantly any potential remaining cancer cells, while bringing his blood counts down to the lowest they could possibly go while keeping him alive. After only a few days he was vomiting all food and drink, and his body became too weak to do anything but sleep.
Once the chemo was over, Brian was ready to receive his new stem cells. Luckily he was able to use his own stem cells that were taken from his bone marrow before the transplant. These immature stem cells would in time regenerate and form new cancer free cells. The nurses called this “Day Zero” or his day of rebirth, and it was one of the most emotional days throughout this process. As sick as Brian was, he managed to sit up in bed and hold my hand as we watched the bag of new cells enter his body. Hand in hand, listening to one of our favorite Beatles songs “Here Comes the Sun”, tears fell down our faces as we witnessed the
miracle of new life being given to Brian.
New life ahead
Even though Brian had his new cells, it would take a long time for the cells to regenerate and build his immunity back. His risk of infection remained extremely high, and we were told he would continue to get weaker before he got stronger. One of the biggest sources of strength during that time was Brian's Caring Bridge webpage. The messages from family and friends that we received daily were beyond inspiring, and we were astonished at the amount of people who logged onto our webpage, over 14,000 messages of love and support. I spent hours each day just reading Brian messages that were left for us. As I expected, Brian’s strength and sense of humor continued to shine through, sometimes even cracking a smile as I read him the funny messages. My favorite message was a touching quote from his best friend … “Love is stronger than cancer”. I would say it to him every night before I said goodbye, never letting a day go by without saying those words.
Brian hit his lowest point about halfway through his admission, his blood counts dropping to the lowest they could possibly go. He had no immune system. He couldn't pick up his head to say hello, he couldn't speak, or even open his eyes. When I went to visit him that day, the nurses warned me that even though this was a normal part of the process, it might be difficult for me to see him in the state he was in. He had developed sores all the way down his throat and was on a pain pump around the clock. When I entered his room and saw the shell of my husband, it was the first time that I really processed what was really happening to his body. I sat and cried to myself for the first time in months. It had been weeks since we were able to touch because of the risk of infection and all I wanted was a hug from him. When his nurse came into his room and saw my face mask soaked with tears, she grabbed a gown and told me she can make an exception. Even I was the only one doing the hugging, it's a moment I will never forget.
On Brian’s 28th day of admission his blood counts came up enough so that he was able to be discharged home to my care, but he would remain in isolation in our apartment until the 100th day post-transplant. As I wheeled him to the car it was difficult to process how much his appearance had changed in the past month. He looked so thin and frail, and his hair had completely fallen out, something we never had to deal with before. As I kissed his bald head and helped him into the car, I had both tears of joy and sadness in my eyes.
The next few months at home were beyond difficult. It felt like Brian would never get better, and we had to do everything to stay positive. My list of responsibilities went on and on while Brian remained too weak to do anything for himself. He wasn’t able to have many visitors, go out in public, or do anything that put him at risk for infection such as cleaning or cooking. Between working full time, taking care of him, and keeping our apartment germ free, I was exhausted. I was once again on autopilot, barely aware of how I was getting through the days. But the love and support from family and friends continued, which in the end gave us the strength to push through the final few months.
The end of Brian’s isolation came on April 24th 2010 and it was one of the most memorable days of our lives. Even though he still had to regain a lot of his strength, he was finally able to go out in public, and most importantly put this chapter of life behind us. I will never forget how bright the sun was shining that day, like there was a higher power sending it our way. We slowly walked hand and hand to Starbucks and Brian entered his first public place in over 100 days. We were both beaming. I remember wanting to scream to the person standing next to us in line, "do you know what a gift this it"?
Everyday is a blessing
Although it’s hard to admit, I have had those moments when I wonder how my life would have been different if I had not met Brian. Usually this battle in my head occurs on a day when the fear of his relapse comes back to haunt me, not able to endure any more thoughts of sickness or suffering in our lives. Or when I had to go through 3 rounds of IVF to have my daughter, and all the struggles that came along with it. More than 6 years out from his transplant, Brian still has many medical and emotional setbacks as a result of all the chemo his body has been through. All manageable, but difficult nonetheless.
Sometimes it’s hard to not be angry when I think of the years we lost in our twenties, when we should have been enjoying our youth, building a life, saving for our future. But the battle in my head ends when I remember how lucky I am to have my husband here with me today, and how a life without him would be worse than any pain we have gone through in this journey. It ends when I look into my daughters eyes, or when we have our “group hug” before bedtime every night. I realize my life may have been easier had we not met, but it would not have been this beautiful.
I don’t know what it’s like to have cancer or chemo running through my body, but I do know what its like to watch someone you love battle it, and sometimes I think they are equally awful, just in different ways. There have been many times that I have asked myself... what would my life be like if I did not choose to stay? For all the struggles and sadness we endured, I can’t help but think that we are the lucky ones. We were both given the chance at such a young age to see life in a whole new light, as a gift not an entitlement. And today "normalcy" feels like we hit the lottery. From all these highs and lows, here is what I do know…..
I don’t take anything for granted like having my health, my freedom, or the value of a good hug.
I have learned that there are some things I can’t control, but I can control my reactions to them, and with a positive attitude you can make life what you want it to be.
I know that when you are going through a really difficult time, really testing your strength, you need to allow yourself to feel every emotion...the good, the bad and the ugly.
Most importantly I have learned to always pay attention to those wonderful little things in life, the ones that can still make us smile through the hospital stays, the tears, the ups and the downs, and the fears we all face. If you look, they are always there.
Now 10 years later, when I look back at this experience with cancer, LOVE is what stands out the most. I remember all of the small beautiful moments that made up the crazy days, like a kiss at the elevator, friends and family by our side, and lots of meaningful hugs. I think of the blessing of having people to love in the first place.
Because after all…love is stronger than anything, and it is sure as hell stronger than cancer.