"Pura Vida"
I am 32 years old. My husband Brant (age 28) and I have been married for four years and we have two boys: a three year old named Cameron, and a one month old named James. My story starts about two months ago when I was almost 33 weeks pregnant. Through a series of events, it became necessary to do an immediate C-section to get our baby out. After enduring labor for 28 hours, within fifteen minutes, I had been prepped and wheeled into the OR. Soon after, my OB announced the arrival of a very large (for his age) baby boy with lots of hair.
As my OB started to sew me up, she noticed something was wrong with my right ovary. My ovary, normally the size of an almond, was about the size of an adult's fist. She did a biopsy of the cyst they found and tried to stitch it up but the bleeding wouldn't stop. She was forced to remove the entire cyst. My OB finished sewing me up and I was taken to recovery. We didn't really think too much of the cyst other than it was a blessing we did a C-section so that it was found before it caused any problems down the line.
Four days later, on Friday, we were packing our bags and getting ready to be discharged from the hospital. Baby James was doing very well in the NICU and we were hopeful of him being able to come home within 4 weeks. The nurse had just left us to get our discharge papers when we received a phone call from my OB. She had the results of the biopsy. The cyst had come back as cancerous.
The initial pathology report showed a carcinoid tumor, which is fairly rare to be found in the ovary, so the biopsy was being sent to Mass General in Boston for further testing. We were told that it would probably be over a week before we got the final pathology report back. In the meantime, they told me the best course of action would be to wait 6 weeks for my body to heal from the C-section, then go in to remove the remaining ovary and determine if the cancer had spread to other parts of my body. Our world had just been shattered and all we could do was wait to take any action. It just wasn't right. We wanted to start fighting the cancer now!
However, we ended up not having to wait very long, though. The following Friday and Saturday nights were spent at home with me having a hard time sleeping. I would wake up not being able to breathe, and feeling like I was being suffocated if I laid flat in bed. I had horrible coughing attacks, which weren’t fun right after a C-section. I ended up in the ER, where they did lots of blood tests and a chest CT scan. After what felt like forever, the ER doctor came into the room and shut the door behind him. We knew then what he had to tell us wasn't good news. But what he said hadn't even crossed our minds. The CT scan showed that my cancer wasn't isolated to my ovary. It was also in my sternum, spine, and both lungs. Less than one week after having my son, I was told that I had Stage 4 cancer. I was re-admitted to the hospital, this time as a patient on the Internal Medicine floor. Here I met with yet another doctor who told us that the type of cancer I have is terminal. She said that with the proper treatment, I had about a 20% chance of living 5 years. But she also said to not give up hope, as the final pathology report still hadn't come back yet and things could be different.
I remember the first time I saw Cameron after receiving the news. I just cried and cried thinking about how I would only be around to witness such a short period of his life. How could I leave him? He would still be so young. I would miss out on too much of his and James's life. And when I would go visit James in the NICU, again I would just cry thinking about how I could possibly be leaving him so soon.
Fast forward to Tuesday, June 14. The final pathology report had come back from Mass General. The rare carcinoid cancer I was thought to have was actually an even more rare neuroendocrine carcinoma. There are two types of this cancer: the low-grade variety, and the high-grade. Unfortunately, my cancer is the high-grade variety. It was during this visit that I was told that instead of the 5-10 years, I would have only 10-12 months before this cancer would take my life. This cancer responds really well to chemo the first round. But in the majority of cases, within 4-6 months of finishing chemo, the cancer will return. When it does, only about 20% of patients respond to chemo. And the doctor told us right now there aren't any other options besides chemo to fight this type of cancer.
So here I am: 32. A brand new mom of two little boys, being told I am about to make my husband a widower at age 29, and that my boys will be growing up without me. Not when Cameron is a teenager, but when he is only four. Not when James is old enough to remember who I am, but before he even gets to know me. Needless to say, I don’t like that prognosis. No. I hate that prognosis. I don't feel like I'm dying. I feel like I have so much left here to live for. I have too much here to live for to leave before my baby's first birthday. So instead of giving up and accepting my "fate", I'm fighting with everything I have to stay here as long as God will let me. I still have my faith. Through all of this, I have already seen so many miracles take place. And I know I will continue to see miracles. I'm putting my full trust in God while doing everything I possibly can to stay here. I'm getting second and third opinions on my diagnosis. I'm seeing a holistic doctor to receive help/treatment through the natural route. I'm going through chemo to kill all the cancer cells in my body. And I'm hoping and praying that God will grant me more than 10-12 months longer with my husband, 2 little boys, and all my friends and family who I love dearly.
Would you be willing to share how you felt in the moment of receiving the news?
It came in so many different stages. When we first heard I had cancer, Brant and I were just in shock. It hadn’t crossed our mind whatsoever, that such a thing was even a possibility. At that point, we didn’t have any sort of diagnosis or prognosis for anything yet. But just hearing that word, “cancer”, your heart sinks. You just don’t think at 32 years old, something like that is going to happen to you. That first initial moment was something that was hard to describe; there was a lot of shock and sadness. And then to find out we couldn’t do anything about it for 6 weeks, made it frustrating. We know how cancer is, and we just wanted to start treating it right then. So with that, came some frustration.
Two days later when I went in and found out that it was actually Stage 4, and had spread to my lungs, spine, and sternum, that was the first time I saw Brant break down. Those couple days were the hardest. It became more real to us at that point. Later to hear, within a week of getting that diagnosis, that I actually had 10-12 months to live instead of 5-10 years… I don’t even know how to describe how that felt. I don’t feel like I’m dying. I’ve been given a death sentence, but I don’t feel like I’m “there”. Until I feel like I am, we’re fighting it. And I’m not going to act like I’m dying. There’s no reason to.
What would you say are things that help you get through the day and stay positive?
I think staying in the “now” helps. We try not to think about the possibilities of what could happen in the future. Every once in a while we will, and the tears come, but we stay in the now. We take it day-by-day, hour-by-hour, or even minute-by-minute. When we start thinking about sad things, we’re pretty good about finding distractions. We don’t need to be focusing on the possibilities of what could be, so we stay in the present. Being a new mom and new dad, there’s a lot to be done. With our two little boys, there are a lot of things to keep us busy.
What does being a strong woman mean to you?
I’m not quite sure. Some people say I’m being so strong, but I don’t necessarily feel that way. I just feel like I’m doing what I have to do. And maybe that’s what a strong woman is; doing what needs to be done despite what the world tells you, carrying on, fighting, and in my case ignoring the prognosis of “10-12 months”. Being strong for me is being determined that I’m going to be my own person, that this is my story, this is our fight, and that we’re going to do this.
What have people done that you have appreciated or what things have been helpful to you?
People have been amazing. I’m beyond overwhelmed from the support we’ve received. Financially, people have donated and helped so much. People have given their time; I don’t think a day goes by that we haven’t seen someone from either Brant or my family. If I needed help with anything, I know I could text any of my three sisters right now and within 15 minutes, one of them would be over here, also my mom. Brant’s mom would do the same. Family has been a great support for us. Our neighbors, and church members have provided plenty of meals for us. They want to come clean our house, help with laundry, or help with the day-to-day tasks that pile up. They tell me, “You don’t need to worry about this. Let us help you.” People just want to help.
It’s been hard to accept that help, and we’ve had to learn how to accept it, but we’ve learned to say yes. We’re just overwhelmed by the love and support we’ve felt. I can’t put it into words, how thankful I am for everyone who has helped.
Would you be willing to share the most difficult thing throughout all of this?
Honestly, I think the most difficult thing is thinking about leaving this earth too soon. My goal is to make it to James’ first birthday. It doesn’t seem fair that I could be leaving before my boys really get to know me. Cameron knows me, but he’s so young still, and my fear is that he won’t remember me. And James won’t even get to know me, if that’s the case. That’s the hardest thing for me to deal with.
I can deal with the physical things. I can deal with the sickness, the pain, and losing my hair. It’s not fun, and I have hard weeks where it’s hard to even get off the couch. Those weeks I feel like I can’t be a good mom or a good wife, and that’s hard. But I can deal with that. I can’t really deal with the fact that I could leave them. All I can do is trust in the Lord, and that if I am to leave, there’s a reason for it. But it’s hard. It’s hard to think of Brant re-marrying someone and her getting to spend more time with my kids than I get to. That stuff is the hardest for me, but it’s why we stay in “the now.”
How is your life different now and how is it still the same?
I’m still a mom. I still have my day-to-day things to do: we have house cleaning, and I have to take Cameron to school every day. Now we’re going through potty-training… life goes on. Life doesn’t stop when you get a trial. You just have to keep living life and the day-to-day things are the same.
Yes things are different. I get sicker, especially during my weeks of chemo. I think the biggest difference, is actually a positive difference. I’m so much closer to my family, and to Brant. I don’t know if a day goes by that I don’t talk to my mom or my sisters. Also, I am closer to my Heavenly Father.
I still have a three year old who sometimes throws tantrums. Parts of me are telling me I should cherish every moment. But sometimes those moments are just with a three year old and you kind of just have to deal with it still.
What do you want people to take from your experience?
This is tough because it’s hard for me to hear people say that my story is such an inspiration… because it hasn’t ended yet. I feel like inspirational stories usually come from getting through a trial. But here I am at the beginning of it. So, it’s hard to feel like I am an inspiration. But I know that my story has touched people’s lives because they’ve told me. And I think people notice how positive Brant and I are trying to stay, and that people notice that.
I was fortunate enough to go to Costa Rica for 6 weeks and work in an orphanage there. Their motto was “Pura Vida,” meaning “live life to the fullest”. Live every day as much as you can. That hit home when I was there, and I’ve loved that motto ever since. So that’s what we’re doing; living life to its fullest right now. We’re doing what we can to stay positive, and focusing on the good in our life.
I honestly kind of feel fortunate that I have a timeline. Yes, it’s short. And yes, it’s awful, and I hate thinking about it. But I know that we can make this year amazing. If God provides that I live longer than a year, I want to look back on this year and think how great it was. I don’t want to look back on this time and think, that was such a dark time. I don’t want Brant to look back on it and think of it as a dark time. I want it to be positive.
Yes, we have our bad days when we can't keep the thought of the future away. We turn the station when sad songs come on the radio. We cry together during movies that hit too close to home. We break down and have a pity party for ourselves every once in a while. But, we also hold each other tighter. We say, “I love you” every chance we get. And we thank the Lord for each day we get to spend together here on earth. If I really am only given one year more to live, we are bound and determined that this year is going to be an amazing one. We’re planning some really fun trips, to make some fun memories. We focus on getting through chemo first, and then when I start feeling better, we’re going somewhere fun. And if God grants me more time, then we will be able to look back on this year as one that is full of great memories, hope, love, and happiness.
I want to tell people to love to your fullest. Do what makes you happy. Live life. Make life great. We can’t all go out and quit our jobs and always be planning fun things; that’s the practicality of it all… but enjoy life and make the most of it. Take advantage of saying I love you to everyone. You can never say it enough. There’s no reason to hold back.
Please come fight for Kristy and support her at the High Fitness Event at Station Park THIS THURSDAY, July 16th, at 6 pm. Bring your mom, your girlfriends, your boyfriends, your husband... it's a FREE event, but donations will be gladly accepted and given to Kristy and her beautiful family to fight her fight. You BET I'll be there, in a tank top and wearing a bracelet with her name on it. Everyone and ANYONE is invited. Invitation below.
Interviewed July 11, 2016. Reviewed, edited, and approved by Kristy Carpenter prior to release.
