Monday, January 14, 2013

My Cancer Brothers and Sisters

A strange thing occurs when people find out you have cancer.  They begin to list off all the people they know who have cancer, or died of cancer, or is a cancer survivor.  I am thankful this happens because I have been connected with some amazing cancer survivors this way, people I look to for inspiration and support.  But this phenomenon makes the world appear as if everyone you know has cancer.  It makes the world seems sad and ill. At first it, when I was newly diagnosed, it was really hard to listen to all the names of people who have or had cancer and I frankly I couldn't understand why people would tell me about them,  I already enough cancer in my life, I didn't need to hear about someone else's. it was overwhelming.  It was difficult sit face to face with someone shaking their head in disbelief as they told me about their neighbor who also had cancer and the conversation would always end with, “Can you believe it?” and I would shake my head too and say something like, “wow, it’s so sad how cancer is everywhere.” I got pretty good at my rehearsed reaction with was a combination of disbelief and sympathy.  I started to get anxiety about going into public places and running into people who i might know because I knew exactly how our conversation would go from start to finish. When it first happened, I just stood there and stared at the person, I was in disbelief they were actually telling me about their sick neighbor or cousin or sister, when i just got the most devastating news of my life.  I actually don't remember the details because I was so shocked my mind started to blur.  But everyone did it, there were no exceptions.  I never got angry at the people who did this, but it made me curious as to why they did it.  What’s interesting is I know I’ve done that before myself, and I don't know why.  It’s just something we all do.   I think it is a way to try to comfort the other person, to somehow let them know they are not alone.  And maybe for some people it is comforting to know they aren't alone, and on occasion it did comfort me, but it also populated my world with cancer everywhere I looked; however, on many occasions, people told me about other people with cancer to try to connect me with that person and I am so very, very thankful for that.

I have met so many cancer survivors who have been guiding me through this difficult time and without them I’d be lost.  I will tell you about one women, whom I met just 2 days after returning home permanently from the Peace Corps and before I got a proper diagnosis (remember, I was misdiagnosed in the Philippines). I met this women at a picnic at the house of one of my parent’s friends.  We quickly hit it off and I realized how similar we were, and I got to know her more over the months, I kept thinking to myself, “She’s me 20 years from now.”  She did things, and was doing things I hoped to do. She offered to mentor me through my job search and provided me with invaluable tips and insights to the federal job and international development job market.  Just 2  weeks before I was diagnosed, I was able to visit DC, where she and her husband reside, and meet with her again (they also have a condo in VT and come here often for some VT fun).   News quickly spread about my cancer and she called me as soon as she heard.  She called to tell me she was my age when she was diagnosed with breast cancer too. I was floored.  I couldn’t believe the similarities and how the universe (or God, or Allah, or whatever you believe in) works in such astounding ways.   She went through everything I am going through and not only has the personal insight to my struggle, she was trained to counsel and provide support to women who are going through treatment for breast cancer.  She sends me random, unexpected letters and gifts and each time I open a package or envelope from her, it is as if I am reading a letter I wrote  to myself.  She somehow knows exactly what I am feeling at different points in my treatment and sends me poems, reminders and lots of butterflies (see below)  to let me know that I will make it through this  I’m so grateful she’s in my life.  

Another cancer survivor  I was friends throughout grade school and high school, although I now realize how  terrible of a friend I was because I was so clueless about the extend of her Leukemia and treatment.  I remember when she was diagnosed in the 3rd grade, we were in the same class and I remember her being absent for long periods of time and then coming to coming to school for half days wearing a white baseball hat to try to hide her little bald head.  She was only 9.  But she wasn’t considered cancer free until she was about 18.  I’m ashamed to admit I had no idea she was still undergoing chemotherapy until the 7th grade, I was a pretty selfish kid, self absorbed in my own world and totally ignoring and missing the fact one of my childhood friends was fighting for her life. I wish I could go back to that time.  I can’t even begin to imagine what goes through a child’s head when faced with a life threatening condition, and her cancer consumed most of her childhood. Thankfully, over Christmas I was able to see her again while she was home for a short visit.  I am so thankful to now hear about her story, her struggle and to see where she is now, which is the healthiest person I currently know because she has fought so hard and long to get herself there.  I can look at her and think to myself, if she can do it, I can do.  Someday I will be the healthiest I can be and she is my inspiration.  

There are 2  other cancer survivors who I think of often and have made a significant impact on me even though we hardly see each other or barely know each other, but now we’re bonded with our cancer. They are also currently struggling with cancer.  

One lives here in VT, for her privacy I won’t say her name, but some of you might be able to figure it out.  She was 29 when she was diagnosed with breast cancer. She went through everything I’m going through right now and was cancer free for 4 years. Then she got every cancer survivor’s worse nightmare.  Her cancer was found in her bones and liver and will forever be there.  I actually went to high school with her, but didn’t know her very well since she is a couple of years older than me. When she found out I had cancer, she also immediately contacted me and met with me.  I can’t even begin to explain how much of an inspiration she has been for me.  She ran several half marathons last year, among  a whole slew of other races.  She ran in at least one race a month last year.  She’s been awesome about guiding me through the process and showing me, no matter what happens, life goes on and to love the life you have.  I can’t wait to run along side her one day.  She is such a huge inspiration to me.

Unfortunately, just a few days ago, she was told her cancer has spread to her lungs and will now start chemotherapy again next week.  She’s only 2 years older than me.  This news has hit me hard.  All those emotions I had from the day I was diagnosed flooded over me again and I couldn’t control them.  The disappointment, frustration, shock, and fear rose up inside me again.  I thought I had been doing such a great job by not letting my emotions take over me and putting on a strong front to my friends and family.  I guess I'm not superwoman.  It’s true, when you bury your emotions,  the hole can only handle so much and eventually it will all resurface in the style of uncontrollable food poisoning vomit, nothing will stop it until it is all out of your system and nothing makes me more uncomfortable than crying in front of others.  It scares me because her life isn’t so different from mine and it angers me because she doesn’t deserve this.  I wish she could get a break in life and now her passion, running, has been put on hold too.  

The other cancer survivor is a guy I served with in the Peace Corps in the Philippines. He was in my group, we arrived in country at the same time, but I don’t think I really ever met him, until now.  We both knew about each other as we did with everyone in our group, but we lived on opposite islands in the Philippines and therefore never hung out.  When I found out I had cancer, a mutual friend told me he had been sent home with Leukemia in April, I had no idea.  I didn't leave the Philippines until July. When we finally connected he was in remission and he is the reason I am currently getting support from Peace Corps.  Because I was misdiagnosed in country, Peace Corps had no idea how serious my situation was and therefore there was no contact with them.  With his encouragement, I contacted PC and explained that in fact I actually do have cancer, which was met with an immediate response and sympathy.  He and I also share another unique struggle, readjusting to life in the US after spending 2 years living in a Peace Corps life, all while dealing with cancer.  Cancer has definitely taken all of our time and has left little time to process our previous life and the reverse culture shock we experience.  

Just after Thanksgiving, after being in remission for only 2 months, he was back in the hospital with Leukemia again, again, the cancer survivor’s worst nightmare.  Because he has leukemia and his immune system is so compromised, he has to spend his time in the hospital while going through chemotherapy again.  He is now needing either a bone marrow transplant or an umbilical cord blood transplant and is now on a waiting list.  After spending about 6 weeks in the hospital, he was allowed to go home a week ago last Friday while he waits for word to be transferred Dana Farber cancer hospital in Boston (currently, he’s being treated at Yale New Haven hospital), but was back in the hospital a few days later with the flu.  I can’t imagine the frustration he must feel.  I can come home every night and sleep in my own bed while I go through treatments.  I have only spent 2 nights in the hospital and it was enough to make appreciate how lucky my situation is and get a small glimpse into his world.

The Butterfly Story
Over the years we have used the butterfly as an "unofficial" logo because the butterfly has a story of hope and renewal. Each butterfly starts life as a homely caterpillar. It then goes through a metamorphosis, lying dormant in its dark cocoon. Later it emerges as a beautiful creature, the butterfly. A woman diagnosed with breast cancer can undergo a similar metamorphosis. We all go through a dark period when newly diagnosed and undergoing treatment. After this dark period, we can emerge stronger, freer of spirit, more graceful and more beautiful than before. Look to the story of the butterfly for hope and inspiration.

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