Category Archives: Breast Cancer Survivor

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.

Pink Honor

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Full Definition of HONOR

1
a :  good name or public esteem :  reputation
b :  a showing of usually merited respect :  recognition <pay honor to our founder>

I don’t want to discount the most beautiful gesture of being honored. Every October my heart is brimming over with love and appreciation, and I never know how to express it. Most years I am too embarrassed to express my thanks, some years I was too sick, and that one year I was too much of a train wreck. This year the push for a change in Pinking seems to be over shadowing the beauty that is in honoring the forever fighters (metsters) and survivors.

Pinking isn’t always about the money and the donations, and it can be “The thought that matters”.

But that’s not all it is. It brings tears to my eyes every time I think of the high school cheerleading squad in Texas that wore pink bows in their hair  in my name, even though only one of the girls knew me. A volley ball team in Rhode Island wore pink socks to honor me, although none of them had met me. My friend wore a pink bracelet at work as a card dealer at a casino every October for me, and my sisters wore matching heart charm bracelets. Two years ago a  14 year old boy from my church in Las Vegas  chose to buy pink socks instead of the yellow ones for no other reason besides  “it’s  for Mrs. Bivens.”

So if it’s not about the money being donated, how does it help?  My story is being told. The volley ball coach had worked with my husband and told them all about my family.  My sisters and friends would tell my story to every person who asked about the bracelet. I know each one had a different take, for mine is the story of hope, of perseverance, and of God’s grace.  I also know that every morning when they put it on they would pray for me. That is humbling.

Whenever I go to the Pink events that are honoring the survivors, that is exactly how I feel. I am honored that anyone is thinking of me, wishing me well, and so very honored to be prayed for. Professional sports teams get a lot of criticism for wearing Pink and having Pink games, but do we really know who they are thinking of when they are putting on their Pink garb? Is it their mother, sister or aunt that they are praying for? This year one of my daughter’s friends on the high school football team  wrote  “Mama Bivens” on his pink wrist tape, and I know it’s to support her as much as me. This touches me so much.

When the martial arts studio I attend sold pink belts, the response was huge. Unfortunately, almost all the kids have  people in their life affected by this disease, but this is a way  that they are able to honor them by wearing a pink belt to class and demonstrations. There are also the relatives and friends that they are celebrating as survivors, as well they should! Keep on celebrating them, and keep sharing their story!

All of our loved ones want to do something. It is a frustrating disease and so hard to feel like there is nothing really to be done to help. Yes, there is monetary donations, but we all long to make a more personal connection. It’s no surprise that my son’s middle school has an overwhelming student  participation in the October Pink Parade every year.

It might not be popular to say right now, but I say go ahead and Pink. Trust me- it feels good to know someone is thinking of you. It gives me encouragement, strength and makes me feel loved.

And I humbly, and thankfully accept your honor.

Pinktober- Think Before You Pink

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How I wish I could go back to the pink cheer I felt when I thought I had my stage II breast cancer beat; the feeling of “we are all in this together, we support you. We care.” The feeling of hope, that we can beat this united under a pink ribbon. We can all do something- we can buy things with pink lids, pink boxes and pink tags. We wear pink jewelry, dye our hair pink, change our profile pictures to pink ribbons and feel like we are getting somewhere. But now we know more. We deserve more.
What started out as awareness has been pink washed into a joke. Too many companies have tried to get attention by “pinking” their product while giving little to no money to the much needed research. If only they did! We might be a lot closer right now. Maybe that number of 110 people who die worldwide every day from this disease would go down. Maybe we wouldn’t be loosing our mothers, daughters, aunts and friends to this disease. I’m afraid we blew right through awareness and came out the other side to ridiculousness. Pinkwashing is now in the same category as the over used Pumpkin Spice. In fact, the pink breast cancer candles are right next to the pumpkin spice candles on the store’s shelf. What does that pink candle have to do with breast cancer at all? Make sure you read the fine print on the label; it might be as much as pumpkin spice does, just that it’s October and that is what is on the shelves. While more and more pink products are being sold, the rate of young women (under 45) being diagnosed with breast cancer has nearly doubled in the past 10 years. How did this happen?
Once the breast cancer travels to another part of the body and becomes metastatic, the pink hope fades even faster. That hope for a cure seems farther way and more allusive, for there is no cure for metastatic breast cancer. October is a tough time for metsters, otherwise known as “lifers”, because every month is breast cancer awareness month for us. When my breast cancer came back in my lungs, the first few Pink Octobers were really hard for me. Everywhere I looked was a reminder of what I had and what I was going through, and I was angry that people couldn’t understand what it was like to know that my life is being cut short because of my disease. (Hint: it’s not the same as getting hit by a bus) Women diagnosed with Stage IV breast cancer live an average of 3-5 years, and I was given just 12- 18 months. Every pink ribbon was like an assault, excluding me from the celebration of survivorship.
October is no longer an awareness month, it is now a call to action month. Everybody wants to do something to help, so please look carefully and think before you pink. We need more. I am so happy to say that feeling of anger faded as I started identifying myself with survivors again. Yes, I am a survivor because I am still here, and I want to take the pink ribbon back on metastatic terms.
I have made it through 6 Pink Octobers as a metster now. We tell the stories of our lives, and continue to keep trying to get the message out about the importance of the research for a real cure. If we are careful about what we pink, what we buy, and where we put our money, just maybe that cure we find will be in time for me too. And that is truly the meaning of Hope for a Cure.

What I am actually fighting

When I decided to get serious about bringing more awareness to metastatic breast cancer, I was thrilled that Susan G Komen asked me to be part of a national campaign. Three women were profiled on “What gives me strength.”  One got her strength from her voice, the other were her kids, and mine was fighting back. I was thrilled to be a part of this as a “lifer”. I was the only one who is stage IV and I viewed this as a conscious choice that the organization is including metastatic breast cancer. Unfortunately, it wasn’t viewed this way by all.

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Some were offended by the implication that metastatic breast cancer can be beat by fighting back hard enough, but that was never how I saw it. I know that 110 people worldwide die everyday from it, fighting with everything they’ve got. I’ve lost so many of my friends that fought as hard as they could to the very end. That isn’t why I went back to the martial arts studio as soon as my radiation oncologist cleared me.  My friends, don’t underestimate my  neuroses.

I worked out so hard because there is no way to check to see if the radiation in my lungs worked. We couldn’t get a clear scan for three months, so in the meantime I worked out as hard as I could to see how far I could push my body. Little did I know that doubling up on the kickboxing classes softened the scar tissue and I got 100% breath capacity back. Who knew? That experiment could have had a different outcome and had been very messy.

So I kept up that pace, pushing toward the next goal and never in a million years did I think I would be testing for my third degree black belt in Tae Kwon Do. I also have to give credit to my 3 kids who take the same black belt class with me. They refused to go to class if I didn’t, so I have to admit I took some of those classes begrudgingly. They did too. It also made for some interesting sparring classes. That also could have been messy.

What am I fighting? Not cancer.  I think that is the job of researchers, physicists and oncologist, and I leave it up to them and I think my team is doing an excellent job. As for me, I fight fear, anxiety, and depression. I fight exhaustion, loneliness, and I fight to keep my family together. Fighting these things back is what gives me strength.  I am blessed that I don’t’ have to do this alone, I have so many in my corner.

Did martial arts change my DNA? No. Do I have an incredible community and support system? Yes. That is what helped keep me going.

At Victory Martial Arts our saying is “Yes, I can.” When it gets tough, I get tired or I want to quit, I think of my friends with bone mets that is so painful that it is so difficult to follow the doctors orders of walking around the block. In my mind I say “Yes, I can, so I do.” I’m working out for them and me. I can, so I do.