Category Archives: Breast Cancer

Artificial Watermelon

 

The flavor of my life became Artificial Watermelon in 2010, when I was given a year to live because I knew that wasn’t the full time to LIVE.

No doctor could tell me how long I had to be well or how well I would feel on any given treatment, so each day could be my last active one. Artificial Watermelon is a flavor so amplified that it doesn’t resemble watermelon flavoring at all, but is its own intense deliciousness. It’s similar to the blue flavor of Gatorade, Jell-O, and Slurpees in that it’s a bizarre flavor that doesn’t resemble anything from God’s green earth.

“Awareness” is a well known form of meditation now, but at that time I just knew that all of my senses were acutely heightened. I would close my eyes while lying in the grass in the park and pick out each bird call, car going by, or kid playing. Since it was summer in Vegas, I would lie next to the pool and feel each ray of the sun’s intensity on my skin and each bead of sweat roll down the back of my knee. While I exercised I could feel each muscle working independently yet together to make a movement and I could feel each breath going through my lungs.

Each day went on like this, one after another. But the heightened senses really aren’t sustainable and turned out to be just exhausting. Day after day, month after month, year after year, a healing was slowly revealed.

The most common phrase I heard was the shocked, “No, this can’t be! Kids just can’t grow up without their mothers.” I heard it so much that I began to panic. The desperation to spend every moment with my kids making an amazing memory out of every mundane task became creepy, unnatural and a little inappropriate as they became pre-teens and teenagers. There is a normal switch when teens want their independence, but I wasn’t ready. Not being welcomed into every aspect of their lives was a pain that went right to my soul. My Artificial Watermelon life has turned into real watermelon flavoring, sweet but with barely any flavor.   As desperately and frantically as I had held on to every moment, time went on anyway. Looking back at these last 7 years takes my breath away. How could it have passed while I was holding on so tightly?

This year our district changed the school calendar and my boys went back to school the second week of August; two weeks early. The little girl in me is crying that summer shortened so much that I have been robbed. Time moved faster in those two weeks, closing out another summer too early.  It just doesn’t feel like this summer can be over.

When I was growing up in New England, I had my own kind of calendar to mark down the time until school started again. In August we would go to bed when it was stifling hot, throwing the sheets to the end of the bed, but would wake up to a chill in the air. The forsythia bush in front of the house had beautiful fluffy white flowers in the summer that turned pink when it was time to go back to school, then brown when the school routine became commonplace. I would look forward to the tri-county fair every year on Labor Day weekend, but with a tinge of sadness that school would be starting on Tuesday and another summer would be over. That is another year away from childhood.

 

 

I see now that I have been trying to manipulate time.  We foster kittens from when they are just over a pound until they are two pounds. Instead of using a scale I can tell when they are ready by how much they climb, how much less they need to sleep, as well as how big their bellies are getting. The whole family has fallen in love with one of the foster kittens we have now, but as much as I love Nikko, I really don’t want to keep him. I like sending the older kittens to be adopted into loving forever homes and getting more baby kittens to love on. I don’t think I want to see Nikko grow up into a beautiful, mature cat. I don’t want to see more time pass.

It is always a wistful, nostalgic sadness that I have at the end of every summer. The fall always brings new routines, new adventures and new starts. Another “year” is happening, with our new school shoes on.

I am learning to let go of the intenseness of the artificial watermelon way of life. The kids are growing, time is moving on. Now I taste the passing of time as the sweetest of flavors.  The ripest watermelons are always at the end of summer, and they are oh, so sweet!

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

A different kind of celebrate

IMG_6894Six more months until a big change!

As time has gone on and the oncologist appointments have gotten further apart, I have gotten more comfortable with living and being well. We went from scans alternating with blood work every six weeks, to 3 months, then alternating scans and x-rays every six months. Last November I asked if we could spread them out to a year and I got a big no for an answer. But that changed last Thursday.

My chest x-ray and blood work look good and I feel great, so I have my last scheduled scan in 6 months, then I will only see her yearly for chest x-rays. A dream I didn’t even dare to dream came true. My doctor cried, hugged me and classified me as a miracle. In 6 months I will be released to yearly check ups. Yes, I was happy, relieved and all that good stuff.

So many people said I must be thrilled and asked if I was going to celebrate. Yes, but it’s not like that; it’s not that kind of celebrating.

Last fall my newly licensed teenager got into a terrible single car  accident, completely totaling my SUV and taking out an electrical box. But the car didn’t flip over and she didn’t get stuck on the transformer; truly amazing. It is unbelievable that she could walk away unhurt. I think I walked around in a daze for weeks saying a gut felt “Thank you, Jesus” like it was a mantra. But did we celebrate? No, we were all completely traumatized. I’m still a wreck when she is out driving, and especially when the phone rings.

It’s a different kind of celebrating, maybe described more as a deep gratitude. There are no party hats or cake for either of us that says “Congratulations on not dying!” Somehow saying “Whoo hoo! Yay! You survived something horrific,” doesn’t quite seem appropriate. All we are saying to both is “That is incredible. Praise God.”

Mother’s Day was a little rough on the whole family yesterday, especially  on the older kids . I almost expected it. We have been living in such a heighten state that now that we can take a breath, the trauma of it all is sinking in. For years the Mother’s Day activities have always had a sadness to them because of  the possibility of it being our last with me here.  There was just too much pressure to make the day one of the best. I’m not sure when that got old, maybe it was around year 3.

It’s so common to have to stop and take a breath when someone finishes a round of treatment or even finishes treatment for good. I used to call it “sitting on a rock thinking about what to do next,” like Winnie the Poo does.

Metastatic Breast Cancer has no cure, but I have been NED for 5 years now. In 6 months I will be with the under 1% who “beat” it, we are too small of a group to even have a percentage. There are not enough of us to even be considered 1%, it’s only when I really press the top oncologist that they admit they have seen one or two of us. I am the only one my oncologist has seen and she has been practicing oncology for over 25 years. Coming in so far below 1% we can’t even form an “occupy oncology” group. I just need to sit on a rock now and think about what to do next.

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.