Maura
“I have learned to embrace the holiness of the ordinary days, celebrate the big moments, and enjoy the time.”
2021 Update
It's so strange how time can go so slowly and fly by at the same time. I got my metastatic breast cancer diagnosis in December of 2009, almost 12 years ago. I have had no evidence of disease for ten years.
My oncologist cried when she gave me the diagnosis, and I still didn't understand. I thought that I beat cancer before, so I will beat it again. I had no idea how many things were wrong with that entire statement.
When I asked my oncologist how long I had, she would say that she couldn't tell me because she didn't have a crystal ball. But when I got my second opinion, when pressed, this oncologist told me to stay home and spend the rest of the estimated 12-18 months I had left with my children. They were then ages 3, 6, and 9.
I was desperate to find anyone living specifically with Triple Negative Breast Cancer metastasized to their lungs, but in 2010 the internet is not what it is now. I was desperate to connect with someone actually living well, but couldn't even find a match in the hotlines.
My chemotherapy was very harsh, and I begged my oncologist for a break. But when the cancer seemed to be on the move again, she suggested doing Cyber Knife radiation on it. It was scary because I was used to treating it systemically, now we were treating it locally. It was also scary not being able to scan for such a long time afterwards due to the radiation. It worked so well, we did it again 7 months later, in March 2011, on my other nodule. The goal of the radiation was to implode the tumor and then to see where the cancer would pop up next. It was never the goal to completely irradiate it, so I am considered an "Exceptional Responder". I have had no evidence of disease ever since.
There has been no flash of light kind of healing; it has been day by day, week by week, month by month, year by year. I can't even count how many "last birthday” parties and “last Christmases” I have had.
Time was marked by scans. We went from appointments every 6 weeks to 3 months, and then to every 6 months, where it will probably stay for the rest of my life.
I was an advocate for metastatic breast cancer until what I was saying didn't match my reality. I would explain that we would always be in treatment, we would never be done. Nope, not for me. That there is no cure, we will die from this. After a while I felt like I didn't have anything in common with other "metsters" and stopped going to the breast cancer conferences. I felt like I had more in common with a survivor of a plane crash, or a sole survivor of car accident. Often my friends will ask me to talk with someone newly diagnosed and I really enjoy that. I'm honest, but I don't have it in me to tell a lower staged patient that they have 30% chance of it coming back no matter what they do, and I'm very gentle in the reality of a newly diagnosed stage IV.
In my 11 "bonus years" I celebrated my 26th wedding anniversary, have been there for my kids' high school graduations, proms, argued with the schools for them, driven them to softball and hockey, taught them to drive, and trained with them to achieve our 3rd degree black belt in TaeKwonDo. All while struggling with survivor's guilt.
I miss all the friends I lost to this disease so much. I once asked a therapist how to deal with the guilt and she said the best thing I can do to honor them is to live the best life I can. I have learned to embrace the holiness of the ordinary days, celebrate the big moments, and enjoy the time.
2020 Update
The onset of the coronavirus and all of the fear and uncertainty that has come with it has left us all with so much worry and anxiety, which those of us living with metastatic breast cancer are all too familiar with. I used to cringe every time someone reminded me that we could all get hit by a bus at any moment, because I never understood this concept. Who is living their life knowing a bus is on a path straight towards them at all times? It is not the same situation and that is not how it feels.
Sad to say, now the whole world knows what this feeling is, and it has a name. It’s called toxic stress. It is almost impossible to make plans for the future, or even your kids’ future, because you just don’t know what is going to look like. You don’t know what is even possible. It feels like there is an alarm constantly going off in your head to warn you something is wrong, making it hard to eat, sleep, read, or even think. That is the toxic stress. And it is what I have been trying to live with for almost ten years.
Twelve years ago, I was diagnosed with triple negative breast cancer, stage IIB. Less than a year after completing what was supposed to be my final round of treatment, I learned my cancer had metastasized to my lungs. Two consultations later with doctors in Las Vegas and in Houston, I was unable to get on a clinical trial, and left with sincere sympathies, and a suggestion to live what would inevitably be the final days of my life to the fullest. Given the severity of my disease, I knew this would be the outcome; but no degree of realism or acceptance could make facing the facts any easier.
However, innovation made that an outcome I didn’t yet have to encounter. Shortly after learning about my cancer’s unpredictable progression, I was approved for a newly developed treatment.
Today, I’m one of the longest-living triple negative metastatic breast cancer patients to have no evidence of disease, with next March marking ten years. I have been extremely active and healthy, setting high goals for myself. I have been training hard in martial arts for the last 15 years, and will soon test for my fourth-degree black belt in Taekwondo. I wasn’t alone in this journey, and my reality might not be as it is if it weren’t for the great doctors, scientists and researchers who provided the innovative treatment that helped me, along with the support and prayers of family, friends, acquaintances, and even strangers.
Realistically, my medical future is unknown. Even with nine years between me and my last treatment, it could come back at any time. That’s why this pandemic has been so difficult for me. It is not healthy mentally for me to be hyper-focused on one aspect of my health, so I spend a lot of time on yoga, meditation, prayer, and martial arts to combat the toxic stress we are all facing. Whether it is Covid-19 or metastatic breast cancer, I still need to focus on living and what IS happening with the time I have with my husband and three teenagers, not on what COULD happen.
Past Stories
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 that, 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 at a distance; 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.
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