Ben Caring For Carcinoid

Breezy Point

2009-04-14T12:25:00.001-07:00

This year, once again, I am training for the Breezy Point Sprint Triathlon in Norfolk, Virginia.

At my uncle’s suggestion, I competed in my first triathlon at Breezy Point four years ago. Although I was inexperienced as a triathlete at the time, I didn’t anticipate that the race would be much of a challenge; swim 1000 meters, bike 20km and run 5km more. And so, I signed up.

At the time, I was completely oblivious to what biking 20 km and then running immediately afterwards felt like. For those of you who have never experienced this, the sensation is equivalent to running 3 miles with cement blocks strapped to your feet. It's not easy and it sure isn't comfortable. Moreover, it hadn’t occurred to that I was no longer in the shape I was in years past. In college, I had been a competitive swimmer and a pretty decent runner. However, somewhere on the road since college I had gained 35 pounds and adjusted to living a relatively sedentary lifestyle.

I will not go into detail about the actual race experience because it really wasn't that pleasant, and I don't remember large portions of it since I think my brain has blocked the more painful parts of it. However, I will say that I spent a good deal of time in the transition area of the race (not really transitioning, but resting) and that 12 miles on a bike makes for a very long and uncomfortable period of time.

That was my first race. One might think that one time would be enough for me. However, I did the Breezy Point race again last year. This time because my mother suggested it. She didn't just suggest that I do the race, but that all 10 of her children do it.

You see, shortly after I completed my first triathlon, our mother was diagnosed with carcinoid cancer. We were all shocked and at a loss as to what we could do. I think everyone of us had always seen our mother as an invincible figure and never really knew how to respond to the news. Well, last year, we decided we needed to do something to raise awareness and funds. We were brainstorming and weren't really coming up with practical ideas. One person suggested we bike across the US while another said he would rather do a hunger strike than bike that far. We were all thinking of things that could draw attention to this rare disease. I think my mother, who is always the practical person, realized that a family of 10 regardless of what they do, tends to draw attention. And so, she suggested we all do the Breezy Point Triathlon and see what came from it.

Well, once again, I will not describe the experience in detail but I think it is safe to say that most of my family members had the same first experience that I did. However, everyone finished the race and we were really successful in achieving our goal. We had over 30 people participate (including our father) and we raised nearly $30,000.

And so this year, we are preparing (more or less) to do the race again. However, this year, I think is even more important to all of us since our mother is doing it. Last year, her physicians would only allow her to do the swim, but this year, she is bound and determined to do the whole thing.

The Pool

2008-05-02T13:44:00.000-07:00

There are common memories and bonds that all of us children have with mom. Then there are those that are unique to each individual. For me, the one that is the best blend of both is swimming.

As I have written before, I was a bit of a trouble maker. The main cause of the trouble was my head. I would get an idea in it that I knew I couldn't get out and then I knew I'd have to follow it through. There was no use in convincing me otherwise. One of those ideas was jumping into water. For some reason, I have always been fascinated with water. Whether it is a pool, lake, stream or the ocean, I get this crazy urge to jump into it. As a child, I once went swimming on Easter day when you could still see icebergs in the ocean.

Apparently, at the age of two, I possessed a fanatical love for the water. My grandparents (my mom's parents) had an indoor swimming pool that we frequented often. I am the third child and by the time my dad finished medical school and was doing his residency, there were four children. With my dad busy with his residency training and my mom attempting to keep her new and rather rapidly growing family afloat, we got to spend a lot of time with the grandparents. My grandmother tells me I used to scare her to death. She couldn't always keep her eye on me and she couldn't keep me out of the pool. I don't think my dad and grandfather were ever worried I would drowned, but just to prove it to Grandma, they "taught me how to swim."

This is my first memory. Maybe it was my first feeling as well seeing as I can also recall feeling helpless. All I remember is my dad taking off my floaties and just before he let go of me saying, "swim to Grandpa." No doubt, the memory has been distorted in my mind, but I remember thinking how far away Grandpa was just as my dad dropped me. The next thing I remember is looking up from below the water, feeling scared, and then thrashing my way to the surface. Eventually I made it to the surface and into the arms of my Grandpa. That was enough evidence for both my dad and Grandpa that I could swim. And so, at the age of 2, I became a water safe. From then on, I had free access to the pool (and diving board). I still would scare the hell out of my grandmother as she would watch me jump into the water, sink, come sputtering to the surface, and struggle to make it over the ladder only to repeat the process, but she didn't stop me because I could "swim".

Over the years, I improved my thrashing. As kids, my mom would periodically sign us up for swim lesson at the YMCA in Charlottetown. There were only 2 pools in PEI and the 20 yard pool in Charlottetown, was the closest. I thought swimming lesson were fun until I failed the level below bronze cross twice (I learned later, I was only failed because they didn't give ten year old kids a bronze cross). We would also visit the Y with my dad when he had Friday or Saturday nights off. My dad would give us free reign of the pool and only got involved when we wanted to play. At first, playing just involved him letting us hold onto his back when he swam, but then it progressed to being tossed in the air (which usually resulted in most of the kids in the pool lining up to get thrown) and finally ended up in wrestling. Wresting was my favorite part of going to the pool with Dad. I don't think it was ever much of a challenge for him, but, for me, it was an all out battle. I would exert every ounce of my energy trying to hold him under water and avoid being held under by him. I would twist, thrash, kick and squirm in order to avoid being help down and would hold my breath for as long as possible in order to try to bring him down. The result was always the same, I would have to tap out because I ran out of air. At that point, he'd let me come up for a breather and then I'd go back it again. I never got tired of it, and each week I was just as enthusiast about the challenge.

My mom didn't come with us on these occasions because they were her nights off. I never really understood why she considered them her night off seeing as every time we'd come home, classical music would be playing, the house would be spotlessly cleaned, the laundry done, and dinner (which more often than not included fresh bread) would be on the stove, but then that's mom.

I associate all of these memories with my mother because she was a swimmer. She was the one who got me to to take swim lessons. She was the one who made sure we made it to the pool to play around while she cleaned the house. And she was the person who encouraged me to join a real swim team when we moved to the US. I know that my mother and I share a love for the water. I also know that much of her life she sacrificed this for us and I am thankful.

And so, as I train for this triathlon, I return once again to the pool and am reminded of my mom.

Spring Break

2008-04-04T11:39:00.000-07:00

Last week, I was home for spring break. Everyone who lives at home was there (Mom, Dad, Davey, Anna and Joe) except Jesse who was MIA in Europe. In addition to them, Naomi came to stay for the Easter weekend which she turned into the Easter week plus a few days. Being home reminded me that there are few places I know where I am able to really relax and recharge. Home is one of those places. The cliche, "home is where the heart is" probably defines home for me in this case seeing as I am so deeply connected to my family that where ever they are, I always feel at home.

This year has been a good, but difficult one. So needless to say, it was great to get away for a week. I arrived late Friday night and was picked up by Dad, Anna and Joe. Usually, the Blackwoods are always late picking anyone up from the airport. Usually the person being picked up is standing on the curb waiting for us, so I was surprised and delighted to see Anna and Joe standing there waiting for me. We headed back to the house, but, as I learned in the car, we were only stopping there to pick up Davey because we were ultimately heading for the Outer Banks. It turned out, Davey was willing to make the 1 1/2 hour drive to the beach with us, but he was not willing to make the 2 hour round trip to the airport in addition to this. I really couldn't blame him. So after making a quick stop at home where I was able to play with Lucy and Louie we headed to the beach at 11:30pm. Such is the way things happen in the Blackwood family.

I did not see mom until the next morning which was understandable seeing as we arrived at around 1 am. I had not seen her since Christmas but it seemed that nothing has really changed since then which means she is doing well. Aside from the fact that apparently she had hurt her leg doing some weird squatting exercise at 'boot camp.' She told me that the exercises she was doing were really nothing so she found it strange that she hurt herself. I was thinking the opposite. What I thought was, "how does a person not hurt him/herself while twisting and squatting at the same time during a workout referred to as boot camp while on top of it all battling a neuroendocrine cancer." Just thinking about it made me hurt, but then the real pain came later when I tried to keep up with Anna, Joe and Dad when they exercised. Needless to say, by Monday, after running, swimming, playing basketball and trying to do a kettle bell work out (see below about kettle bells), I was complaining about being sore.

The rest of my week was much the same as the weekend and by the end, I knew I has a good break because I was wishing I had just arrived. Throughout the week I continued to exercise regardless of the soreness. I did so seeing as both Anna and Joe pointed out that their money (at that time and still) is on Jesse seeing as he seemed much fitter than me. So as week two of training draws to a close I want to tell Anna and Joe that they should save their money seeing as I've now joined a master's swim team.

One other thing that I did do was research a bit about carcinoid. It seems, for the first time in my life, I can say that the science I have learned at school was actually useful. For some reason, I had never really looked into carcinoid until this week. What did I learn? Well, I think I save that for the next blog. What I will say is I really do not believe carcinoid is as rare as people claim it to be nor is it much different from most other cancers.

The Kettle Bell
You see my dad, you could say, has somewhat of an obsessive personality when it comes to certain things. It turns out kettle bells are one of these. What is a kettle bell? Well think of a cannon ball and then put a single continuous handle on it and you have a kettle bell. A few weeks early my dad left me a rather excited message telling me he had purchased a pair for me and Stephen so I had a bit of a kettle bell experience before I got home. However I had only experienced the 35lbs kettle bell. Dad has the complete set starting with Tiny or Weenie (I'm not too sure which is which, but they are named) who weighs roughly 8 lbs and all the way to the 75 pounder whose name I forget.

Denial

2008-01-29T22:09:00.000-08:00

I realized recently that I have been living in denial. I have always been slow to deal with issues in my life. I am the type of person who doesn't deal with an event until it has happened. For instance, say I move. For some reason, none of the feeling of absence and longing for others hits me until I leave. I never find myself saying, man I am going to miss this place or these people until they after I am gone. I know this is not necessarily a bad thing because it allows me to live in the moment and enjoy life as it happens. However it also can force me to struggle with an issue because I do not always foresee being beyond it or the end results.
This has made dealing with my mother's cancer extremely difficult. Also the nature and obscurity of carcinoid has permitted me to live this way. No one really knows what is happening or what may happen. All anyone knows is it is a slow developing, incurable endocrine cancer. For me, this boils down to a prognosis of we can't tell you when carcinoid will kill you and how it will, but, at some time, it will kill you.
As I said, it takes me a while to deal with issues, but honestly it takes me a long time to really do anything, like sort my life out and figure out what I want to do with it. For some people, this comes naturally, for some others it never comes, for me it came, went, and seems to be coming back again. And right as it is happening, one of the people who I want to witness it most may not be there to see it.
People are always amazed by mother. No one, it seems can grasp how a 5'5, 100 lbs woman would produce and raise 10 children of which 8 are boys all over 6ft. They see her and think she must posses this supernatural strength and drive in order to have kept them all fed, clothed and organized. but no one ever considers the real strength she possesses: her ability to intimately know and experience the pains and joys of all ten of her children. My mother's life has been her children, when we have struggled and suffered, she has. And when we have succeeded and felt the joys of life, she too has felt a measure of these.
Right now, I find myself beginning to take hold of my lifelong dream. A dream that I know my mother too has always hoped for me to live, not because she selfishly desires this, but because she knows it is what I deeply desire and always have.
She is battling with cancer and I cannot seem to deal with this. Part of my brain understands that my mother isn't going to be around as long as I once thought, but an even bigger part does not want to believe this.
I live 3 miles from school. I am not patient enough to walk and I am too cheap to take public transportation, so I bike. Each day, I ride to school regardless of the weather. Sometimes, I can just let my mind wander and enjoy the ride, but more often than not I find myself focusing on what I have to do that day, or, in the case of biking home, what I did that day and what I will do tomorrow. I tend to find that I cannot have these thoughts without thinking about my mother. I look to the future and see a world in which she is not there to hear about my day and the days to come. She is not there to share in my successes and to comfort me in my failures. I find the tears welling up and so I push myself. I peddle harder and harder so that I can think of nothing else but the exhaustion in my legs .
I recently shared this with someone who told me that maybe this is my way of dealing with the disease. Maybe it is a my way of beginning to let go. Yet I feel this cannot be the only solution. I must move beyond this. A life of denial is no life and it's certainly not what I want.

2007-09-01T19:54:00.000-07:00

May 20th, 2007

Writing this blog doesn't seem to get any easier with time.  I suppose the difficultly lies in knowing you are writing about yourself in relation to the impending death of someone very close to you.  In order to overcome this difficulty, my brother Jesse suggested that I write a bit about myself in order to introduce me to you.  I am finding this exceptionally difficult as well.  I have only tried to write about myself once before.  That was when my brother-in-law suggested I join lavalife to meet people.  After five months, I had one date.  I am hoping to have more success with this (upon rereading this, it does not sound right.  By success, I mean attention to carciniod, not dates for me).
As I have written before, I am the third eldest.  As a child, I was a bit of a handful.  You know those children that need to be constantly told what the lines are and not to cross them.  Well, I was that child.  I was the one who constantly crossed the line simply for the sake of seeing how far I could get, and what the result each time was for crossing it.  To me, it was a game.  To my parents, family members and others who I played it with, it was a form of torture.  I think my parents tried every form of traditional discipline on me.  They quickly learned that I had a very vivid imagination so that toys or no toys really did not decrease how much I enjoyed life.  Grounding me from going outside did temporarily put a damper on things, but then I learned how to climb down from the second story balcony.  Everything they tried either had no effect or only temporarily deterred me from crossing the line once again.  Thinking about it now, I wonder what I would have done with a child like me.
The truth is, I probably would have given up 'the game' at a much earlier age if not for two things.  One, I always seemed to get a reaction out of at least one person.  And two, I quickly came to understand that no matter what I did wrong, my parents would always love me, forgive me and be there for me.
Just so you know, I did eventually give up and stop tormenting my parents.  It happened when my older brother, Stephen, went off to university.  Until then, he always had to be the responsible son, the man of the house when my dad was gone.  He carried the responsibility of being the role model to the younger boys while I was the example of what not to do,  However just before Stephen left, he relegated to me the responsibilities of the eldest son. I now know I would not have so willingly accepted this responsibility if I had known what it entailed.
I think back on this part of my childhood now because carcinoid does not seem to adhere to any lines.  I moved home after my trip to South America because I thought there would be a prognosis that would give carcinoid some sort of boundary.  I hoped that a line would be drawn, and that it would remain there.  I left 8 months later, frustrated and angry because I could not accept the disease and what it was doing.  Nor could I accept my reaction to it.  It did not have a clearly defined boundary.  There was no line that it could be pushed back to and continually held there.  I was disgusted with it and with myself.
I also think about this because I wonder what my life will be like without the unconditional love of my mother.  Even as an adult, I still rely upon her for support, advice, compassion, and love regardless of what I have done or how I feel.  I am not ready to cross that line.

2007-04-03T08:27:00.000-07:00

My name is Ben. I am the third eldest Blackwood. I was not sure what to write or where to begin. I have decided to begin by sharing a journal entry from the time my mom was diagnosed with carcinoid. At that time, I was coming to the end of a three month trip though Peru, Bolivia and Argentina.

Dec 7, 2005

I am still in South America and have yet to make an entry since the end of October. I guess, at this point, I feel I will remember most of the events and people, no doubt, some memories and emotions will be lost, but chances are I will never read anything I have written anyhow.
Today my mom had her appendix and ovaries removed. I talked to my dad for the first time since I left Arequipa. It is definite that she has carcinoid. They have not located it (other than in her appendix and ovaries) or know the extent of it, but she has cancer.
I've read that with most cases a person lives up till 5-10 years after the symptoms present themselves. Maybe a person can live longer, but then maybe they will live for a shorter period of time?
I do not want my mother to die. Maybe she will live for another 20 years. Maybe they will find the cancer and remove it. Maybe they will find a cure. However it seems that both are not very likely.
There is prayer and fear.
What will my father do? Anna? Joseph? Davey? What will I do?
Maybe it will draw us closer. Or will it push us apart?
A big part of me really doesn't believe it. There is biochemical evidence, but no other physically seen cancer. The scans are suspect, but nothing actually visible. I don't want her to die.
I want to cry and I don't want to cry. It reminds me of when we left PEI. I did not cry then, neither did my mother.