When I was first diagnosed with Leukemia it felt as if someone strapped a 300 pound weight on my chest. For the next year it was an impossible weight to shake loose, permanently affixed and constantly crushing.
At the time I only knew Leukemia was a bad and had no idea what it really was. I quickly found out I had cancer of the blood. It was tough to believe I would actually survive. Particularly after going online and finding horror story after horror story. The comforting words of others simply rang hollow in my mind which had been reduced to an echo chamber.
Diagnosed With Chronic Myeloid Leukemia
When I was first diagnosed with Chronic Myeloid Leukemia or CML, I had a white blood cell count of 135,000. My blood was so thick with cancerous white blood cells it had turned to a slush. Causing tunnel vision and later a focal point seizure which landed me in the hospital. I initially thought the tunnel vision had something to do with getting Advantix on my skin. Boy was I wrong.
That is part of the problem with Leukemia, the symptoms are mild and by the time you do develop significant symptoms you have had Leukemia for quite some time. I was lucky, even though my white blood cell count was extremely high, my leukemia was still in a chronic phase.
Six months before I was diagnosed I was severely depressed and lethargic. One day when I could not tolerate it any longer I dragged myself out of bed and started working out, basic pushups at first, then the P90X program soon after. After pushing myself through five and a half months of the P90X workout, the combination of the physical demands and thick blood seemingly brought everything to a head. In a way, P90X saved my life.
I thought as I laid there in the hospital bed at MGH staring at the fear laden eyes of family and friends that I was a dead man. Searching on the internet for any sign of hope was pointless. Sure, I knew Lance Armstrong’s story and his accomplishments, but was he a freak of nature, truly superhuman? What chance would a mere mortal have? Hey wait, when did I become mortal? I spent my life thinking I was superhuman. Suddenly, the weight on my chest increased, it was suffocating, energy drained and my confidence shattered.
I Am Fighter
At the bone marrow transplant and blood transfusion department of the MGH Cancer Center there are a series of flags that hang from the ceiling of the waiting room. The flags have the thoughts, prayers and declarations written by children who had been fighting cancer. One flag simply says “I Am Fighter”, which resonates deeply within me. I had always been a fighter and tough as nails and would often joke that I love to persevere. That little flag, was just the reminder I needed at a moment when I needed it most. Just thinking about that “I am Fighter” flag leaves me choked up making it hard to be tough with wet eyes. It is also why this article is titled as such.
Speaking Out About Cancer
In the past two years I have met quite a few people who have beaten various forms of cancer, leukemia and other devastating diseases. So many of them today have fantastic lives. But many people keep the cancer part of their lives a secret in fear that it will effect their work, friendships and possible opportunities. For whatever reason, the more I say I have leukemia, the easier it is for me to digest and accept it. But oddly enough, it has taken me almost two years to write anything publicly about my battle. For everyone, the choice to either talk about or bottle away their story is a personal choice which their is no wrong answer.
In the Beginning
The beginning was hard, I think I spent the first year exhausted. Some days after a short walk I would wake up on the floor with my dog laying by my side. I think it was in part the medicine, a pill based chemotherapy I take to change the way my bone marrow produces white blood cells and keep my leukemia in remission. The stress and uncertainty of what would happen next is also much more draining than you would imagine. Some days I would only have an hour or two where I could stay awake and function in any type of normal capacity. I used those few hours the best I could trying to stay focused on the positive side of things. I asked everyone around me, doctors included to never talk about side effects or limitations. In sports, you always keep your eyes on where you want to go, never on what you are trying to avoid. I think life is like this as well.
Dogs Truly Are The Best Medicine
What helped the most was the company of my dog Moose. There are days, plenty of them, where the company of a dog is the best medicine. The days where a hug, but not words were needed. Waking up from another unplanned nap on the floor, caused by shear exhaustion, to find the dog dutifully sleeping with is head on my leg made more of difference than the sleep itself. My dog kept me grounded when the world seemed like it was spinning out of control (the inspiration for the photograph I created above). If you don’t have a dog, find a therapy dog, dogs are simply great medicine of which I can not overstate enough.
I certainly do not want to belittle the impact of Margie (now my fiancé) or my brothers and friends. Margie, who had the best response to my Doctor informing us I had Leukemia, is like a rock.
The Ebb And Flow of Friends
Oddly enough, cancer will separate friends from the people who you thought were friends. It is OK, you will make new friends, better ones. I have made more friends than I have lost through having Leukemia. Have I missed out on opportunities because I am vocal about Leukemia? I don’t know, perhaps. Life is a funny thing. I can only hope my efforts help someone else the way a child’s small flag helped me.
Actually, I owe “T” a very big thank you. He is a South Boston kiteboarder I had met months before being diagnosed who helped me organize a few things during the days where I could barely function. One of those people who quietly offers to help, asking nothing in return. What he would view as a small favor would mean the world to a guy franticly grasping to keep from losing everything. You would be amazed at the impact you can have on another person.
Keep Living Life
Otherwise, keeping myself busy to keep my mind on something other than hospitals, side effects and the future was important. Much of Fido Loves was written during the first year of my diagnosis. Even the days where I could only stay awake for a couple of hours, I would force myself out, walk the dog, take some pictures and write articles. Fido Loves has been a great way to build a new life and keep myself busy. Life after cancer does not have to be over, it is just different than it was before. Which is fine with me.
Where Am I Today?
I am finally writing this as two years to the date of my diagnosis rolls around. If you met me on the street you would never guess I had Leukemia. I am in remission, even on a molecular level there are only traces of Leukemia in my blood, I mean traces. Every day I take an innocuous looking pill called Gleevec which keeps my bone marrow from producing cancerous white blood cells. There is not a cure for the type of Leukemia I have, but it is manageable and I tolerate Gleevec pretty well. I will guess that cure lies locked away in stem cell research. But until that day, Gleevec should keep me alive.
My life is so very different that it was before Leukemia. Not bad, probably better in many ways. When I created Fido Loves I inadvertently created a showcase for my photography. These days I am pretty thrilled to work as a photographer. I never would have imagined this was possible. One door closes and another opens.
Before Leukemia I was an avid kiteboarder, mountain biker and snowboarder. Lately we have been taking the dog mountain biking again. It turns out I can still crush a bike. If the wind ever blows again, I plan on pulling out an old set of kites and start kiteboarding again as well. This is a big part of my old life which I thought was gone forever. I miss the life of risking my life (go figure).
Most importantly, that incredible crushing weight is off my chest. I can breath again and go through my day without wondering if this year is my last year. There is life after Leukemia, not that you ever really get rid of it.
For Those Just Diagnosed With Leukemia/Cancer
So if you are there, laying in a hospital bed somewhere, waiting to find out what kind of Leukemia you have and what your life will be like. Stay positive, keep your mind right. If you can beat it there is life after leukemia as there is after other types of cancer. If I had to do it all over agin I would handle things the same way. Let others worry about side affects and the negatives for you, you need to keep your head clear.
There are breakthroughs in medicine happening all the time. It was only 10 years ago CML was a death sentence, but Dr. Drucker made a difference. If you are just finding out the news now, dig in and fight.
The dog really made a world of difference in my day to day. If you ever wonder where the bond between Moose and I came from this is it. I not only owe Margie and my brothers, but I owe my dog everything as well. If you don’t have a dog, look into a therapy dog to help cut the stress.
I would not be where I am today if it were not for Dr. McAffee and the entire team at Massachusetts General Hospital Cancer Center. As you can imagine in the past couple of years I have met quite a few doctors, some good. Everyone I have been working with here has been the best. And Dr. McAffee has one of the best laughs ever…
A Search For A Cure
I am lucky, there is a way to manage the type of Leukemia I have which has allowed me a normal life. There are other types of Leukemia for which there is no cure or management. These days when I see groups like the Leukemia And Lymphoma Society and events that bring both awareness and help raise resources for those suddenly in a horrible situation, it has much more meaning. My time on the chemo floor or at the cancer center leaves me feeling guilty. Even on my toughest days, there is always someone else nearby with a much harder path.
I will do my best to update and add resources for those just learning about Leukemia or looking for a way to help others. This is by far the hardest thing I have ever written about. I look at Leukemia, surviving Leukemia and living with Leukemia as an extremely sensitive subject to write about. In person, as many people I have met know, I am very open about having Leukemia and willing to discuss. Unless the topic turns to children who have been diagnosed with this horrible disease. I can’t write it, say it or even think about kids having to face these things without shedding tears.
- The Leukemia and Lymphoma Society
- LIVESTRONG the “Get Help” section is a great resource
- The Leukemia Section of LiveStrong