Tag Archives: #dontignorestageiv

Growing up in the pink

Today is my baby’s 11th birthday. He was 2 when I was first diagnosed with breast cancer and was still in diapers. This means for 9 years I’ve been looking at him and bursting into tears, thinking that I won’t live to see him grow up. When he went into kindergarten, I thought I had less than a year left to live and had to make the overwhelming decision on whether to put him in for whole or ½ day. My mother said I had to start making decisions based on if I was going to be sick or well, and that I couldn’t live in the in-between world anymore. So I decided I was going to be well, and put him in ½ day so that I could have afternoons with him like I did with his sister and brother, and prayed for the best.

On the third day of school, they thought it would be best for the kids if the parents weren’t let into the playground anymore, so I said good bye and got extra kisses at the gate. I will never forget looking through the fence, gripping the metal links until my fingers hurt. He was playing happily with his new friends, looking back to wave several times. I wasn’t the only parent crying there, but I was the only one with this reason; that moment was just like our life.  My life with cancer has put me a distance away, watching and waiting.

He thought he had come up with the most brilliant plan when he was 6 and announced at lunch “I know! If mom dies, Dad can marry again and I can have a step-mom!” (I was secretly happy that nobody else at the table thought that was a good idea at the moment.) Every year I never know when to have the talk with his teacher to explain why he draws pink ribbons on everything and likes to share his knowledge of which breast cancer organizations donate the most to research.  It is guaranteed to be awkward.

Growing up with cancer is all that he has known and it really has been his childhood. He has seen me speak to drug companies, and be honored at fashion shows, baseball, basketball and pink hockey games. He has done public service announcements and photo shoots with me, met WWE wrestlers, and painted tiles across America.

So much of Hunter’s childhood I have spent sad, nostalgic, and even frantic at times. In one way I have treasured every minute with him and tried to squeeze out every drop life has to offer, but in another way there have been wasted moments in sadness. Our beautiful trip to Hawaii was so bitter sweet that the pictures are hard to look at. So many times I have hugged him so tightly and wondered who his first love will be, what will he do when he grows up, will he have a family? Will I get to see it? How much of it? Is it ever enough?

But this is him. This is me. This is our life; and for however long or short it is, I’ll take it.   img_9141

Hip to be Pink?

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I had a blog years ago, long before everyone and their tumor had a blog. I guess you could say I was a hipster long before being a hipster was even a thing; as soon as something was too trendy it was time for me to move on. This applied to everything from haircuts to cities.

I started my adult life living in Orlando in 1991, right as Nickelodeon opened its studio and all sorts of movies and TV shows were filmed there. Next I moved to Seattle right as the grunge movement hit, the city inundated with young adults wearing plaid and rejecting any form of cleanliness. I was not into that movement.

Two years later, now married, we moved to my homeland, Boston. I never thought Boston would be so “in”, thanks to Ally McBeal and other legal shows making it look so cool to be young and hip in Boston.

In mid 2000’s we moved with our 2 kids to Las Vegas. But in 2004, who didn’t, for goodness sake? An estimated 5,000 people moved in every month. I really didn’t see that one coming. But I stayed in Vegas, wearing my yoga pants until I ditched those when it became the housewife’s uniform in the Summerlin area.

In 2008 I found out I had breast cancer and my whole world went pink. Yes, I knew pink was one of the most recognizable ribbons, and still I felt that at stage IIB it was my duty to help spread awareness. Every October I would color my hair pink so that when people asked about it, I could tell them a little bit about the less common type of breast cancer I have, Triple Negative. A few Octobers later strangers stopped noticing, for pink hair was the trend and way too many people in Las Vegas wore it on a regular basis. October was becoming a big explosion of pink! There were now pink blenders, pink deodorant, and pink feminine products. (OK, I guess they always had those)

In 2010 I got the news that my cancer was back, and it had metastasized to my lungs and statistics showed I have about a year left to live. Suddenly, multiple songs hit the radio waves about living like your dying. Really?? How can this be a thing!? The big hit that year was the song “If I Die Young”. At the time I was 41 and could only be in Young Survival Coalition because of my age at diagnosis, but I considered myself to be young. My kids sure were- ages 9, 6, and 3. Let me tell you, these songs and videos about “living like you were dying” didn’t have a clue- it is exhausting. Living life frantically and trying to grab hold to remember every minute isn’t something that can be done for long.

After completing many rounds of brutal chemo, it looked like the cancer had stabilized so I asked what we are doing here. Am I living, am I dying, what is this? My oncologist explained it as we are trying to get me as strong as possible for the next round of treatment. Spoiler alert-I haven’t died yet. In fact, it has been almost 5 years since any evidence of disease.   I just found out there is a name for me; Exceptional Responder. I’m thinking that’s the medical term for miracle.

But I had those words stuck in my head, and this is how I live. I am trying to get myself as strong as possible for the next round of treatment. Even this August when I hit five years NED, I still want to be eating well and trying to be in the best shape I can be because I will always be stage IV. This is my story of living in between worlds.