Caitlin Kennedy – {Unconquerable}

Today’s story is told by Caitlin Kennedy.  Caitlin is another young woman, diagnosed with stage IV metastatic breast cancer under the age of 40.  The disease has robbed her of ever having her own children, a consequence of cancer, that I, personally think is most incomprehensible.  You will be inspired by Caitlin’s courage to live {Unconquerable}.  Enjoy today’s #voicesofMBC #metsmonday story.

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Before the day I found the lump in July 2010, I was,  2 weeks right before my 26th birthday. I was excited that I was finished my hours for my clinical social worker license & was making plans to move in with my boyfriend, Kyle, eventually. We both were finally getting settled in our careers and  like most of our friends we began talking of moving in together. There was endless possibilities as to where we would move, what I would do once I got my clinical license. He was working in NY & I in NJ. There were no barriers or obstacles to where or what we could do. I was more busy caring about work, finally getting my clinical license in social work, dealing with debt from grad school, and saving money so I could move in with my boyfriend. Cancer was NOT on my list of things I wanted or had to care about. I was always incredibly health conscious & was an avid exerciser. I believed that if I ate right and exercised and did not smoke or drink too much, then I would not get cancer.

Life threw me a curve ball & took that theory and threw it out the window. So lets go back to July 2010, I found the lump and  then I asked my boyfriend to feel it. Honestly,  neither one of us thought it was anything to worry about, I googled “Breast Cyst” and the first thing that came up was Breast Cancer. I doubted it was cancer, but the word CANCER kept looming in the back of my mind. I was always afraid I would get cancer, because almost every family member of mine got cancer after 50 (or so it seemed). I took such good care of myself believing that I would PREVENT it from happening. I also kept telling myself that I was 25 and honestly never heard of anyone under 50 getting breast cancer. The lump was there and  it itched and  hurt, but I was in no rush to do anything about it because I had no idea that 20-somethings could get “old people” diseases.

The only action I took was to call my PCP (primary care physician) and  all he stated was to discuss it with my OBGyn, but he was unable to tell what it was. I never called my OBGyn, because I already had my annual appointment scheduled in a few weeks so I figured it could wait until then. I waited more, clearly because in my head only OLD people got cancer.

I finally saw my OBGyn and at the end of that August of 2010, my life changed. The following 30 days were a blur. I was sent to get an Ultrasound, because my insurance refused to cover a mammogram because I was 25.  I then was ordered to see a breast surgeon for a biopsy and  the wait was 2 weeks. The medical community was not even in a rush to see me for this lump, because I was 25, it was assumed it was non-cancerous and due to hormonal issues. I finally got the biopsy and  7 days later I got the call that changed my life.

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Little did I know my life would change, shortly after this picture was taken.

I was initially diagnosed that following September of 2010 with Estrogen Positive Breast Cancer. I was diagnosed with stage 2B breast cancer. I had a bilateral mastectomy with reconstruction and  during that surgery they found 2 breast nodes with cancer and then 1 node out of 21 in my left armpit with cancer. No one told me that the nodes were a risk for metastatic disease. No one told me that once cancer was caught early it could come back. All I knew was it was caught early and  I was lucky, because cancer is cured if caught early.

I did standard chemotherapy, which was dose-dense Epirubicin/Cytoxan and 12 rounds of weekly Taxol. I was out of work for 4 months and then went back at 80%. I lost my hair, which I think was the hardest for me. I looked sick, WHICH made the whole thing real. Once I finished chemotherapy, I went on Tamoxifen, because my cancer was fed by the hormone estrogen. Then as extra insurance, I had 28rounds of radiation & finished the day after my 27th birthday. The whole journey lasted a year. From the day I ended radiation I started to count down until 5 years would have passed and  then I would no longer go to my oncologist or deal with cancer again.

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In 2013, I went for a routine physical at my PCP, who did an EKG to monitor my heart as chemotherapy has a tendency to harm the heart. The EKG picked up a “blip”, so I was sent for an echocardiogram. The echocardiogram picked up fluid around or near my left lung. My heart sank. I knew in my heart of hearts it was not good. I either was dealing with a new cancer or my cancer came back, which made no sense because I did every treatment that the medical community recommends to CURE early stage cancer. After a CT, it was confirmed via thoracentisis that my cancer did come back in the pleural cavity between my chest wall and lung, fluid over 1L was filling in my chest cavity and it was cancerous. It also was confirmed it was the same cancer I had in 2010 – Estrogen Positive Breast Cancer. At that time my cancer was only in my pleura cavity & in the pleura lining. I was put into menopause, was told my cancer has now spread and I would be on treatment for the rest of my life, would be unable to bear children & that this is now terminal. I was 28…two weeks before my 29th birthday I was given this bleak news.

In August of 2013, I was put on Femara, Lupron to shut down my ovaries, and Zometa every 3 months to prevent bone metastasis. I was on Femara a year and then the week after my 30th birthday in August 2014, I learned the cancer progressed to the vertebral bodies in my thoracic spine. I started to think my birthday was bad luck… clearly it was usually when I got bad news. I was put on another drug called Affinitor/Aromasin & still was given the same Lupron and Zometa. This combo lasted 7months. This past April, I learned that my cancer moved into my ovaries after I had a oophrectomy, which was only done so I would not have to get Lupron injections. I was then sent for scans which confirmed that the same cyst in my Thoracic Vertebral Bodies grew into a 2cm tumor and fractured my t3. I had radiation to my thoracic region & now I have been on a clinical trial since May of 2014. I have monthly labs and  bimonthly scans, which are constant triggers for anxiety & depression. I feel like a veteran who has been through war, except every month I get to go back to war and wait and see if I am either winning the war this month or the war is killing me.

After I finished treatment for my early stage diagnosis, life went on. A month post radiation finished in 2011, Kyle & I moved in together, we moved to the NJ shore & I got a new job using the clinical license I worked so hard for. I went back to my healthy living and running and was trying to train for a road race again. I still saw my oncologist every 3mo for labs and check ups. Time passed. My hair grew. I started to forget and separate myself from the cancer world. I was able to not feel so anxious at the doctors & the war against my cancer was behind me. Once, I was told my cancer had spread. I was angry, sad, and also ready to do everything I could to make sure I would get the most amount of time out of every drug. I wish I could say that I am always positive, but living with metastatic cancer at 31 sucks. I have had to take too much time off from a career I put a lot of time and money into. I can no longer bear my own children. I have watched my friends have children, get married, buy homes, and live carefree lives & I have been dealing with cancer. Every day I think about cancer, but in that same breath I use everyday to kill cancer. With each progression, I go through the anger, the sadness and the fear, but I notice that despite all this loss I still am proactive. I turn to my fellow metastatic friends and talk to them. I also research the heck out of treatments and ask my doctors the most questions I can. I am the most annoying patient, because there is no question I will not ask. I have been getting more than one opinion with each progression, because no matter how scared I am, I use that anger and channel it into being one proactive patient.
I try and live my life day by day. The 18months of living with metastatic disease I have to be honest, I kept waiting to get a break. Turns out with this disease there is no break, so I am no longer waiting. We kept waiting to go on vacation, buy a house or even talk about getting married. In the last 6months, the waiting is over. I chose to live. I took time off from work & have spent the last few months taking care of me by not only going to doctors but finding what I enjoy in life beyond work, beyond cancer.

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Powerlifting

The same things that brought me joy before cancer, bring me more joy now that I have cancer. Time is precious. At 25, you think you are indestructible and  I still thought I was even after the first blow of cancer. Once I got mets, I realized that each day is a blessing. Before cancer, I loved to lift weights, run, read, draw & paint, and I loved cats (yes, I am a bonified cat lady & I love watching cat videos almost all day everyday). So what do I do each day… despite having cancer, I go to the gym, I power lift and  I give my cat and boyfriend kisses every chance I get… I won’t let cancer stop me from doing what I love, not yet, I am not ready to let it win the war. I feel like I love deeper. I love Kyle so much, he has stuck with me through this whole thing and unlike family, he could have left, but he is there making the same hard choices I had to make at such an early age. Although we don’t have the “ideal home” or our own kids, we have proven that we could withstand anything.
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What I find helpful is when people still treat me like the same girl I was before, like I don’t have to update people on my treatment or talk about my health. I can’t talk cancer everyday. I am the same Caitlin, I just get tired sometimes and  I take a bunch of pills to keep me sane and alive. I like when I am with my friends, family and Kyle.  I forget I have cancer. That is when I feel a lot of joy, when I don’t have to talk about it, when no one says “look how healthy you look” and we just act as if the cancer is not even in the room.
A lot of people do not know what metastasis is. Honestly, I had no clue myself until I was living it. I think at a fault we are told EARLY STAGE is CURABLE. In fact, we need to figure out why cancer comes back and why stage four cancer is not CURABLE. I love the color pink, but I hate how people assume that by wearing that ribbon they are helping cure cancer. If they only knew that standard cancer treatments have changed minimally because people assume that “BREAST CANCER FOR THE CURE” or whatever. I want to see more movement in clinical trials so these better drugs can start curing us. Unfortunately, because of pink washing people assume like I did if we PREVENT it then we are OK. Cancer is not preventable and is not able to be cured in an early stage. I wish people knew that, maybe they would be more afraid and more action would be done to save women like me from dying before they see 40.
I like to believe a cure is hidden in the clinical trials. Maybe its in immunotherapy, stem cell treatments, T-cell treatments, or targeted therapies…. Maybe its in the whole concept that cannabis cures cancer… or a vaccine. I would just like to see it on the market instead of pharmaceuticals that just extend our lives. I want to see something that eradicates it, because I am not ready to die.
I would also like people to stop saying early detection or prevention is the way to cure. I want people to realize that any cancer no matter how early caught, is life threatening. I want families to realize that this can happen to their daughters. Maybe then there will be some change.
Lately I have been listening to this song on my way to and from my doctors… The lyrics have helped me stay strong.

If you would like to connect with Caitlin, you can also find her blogging here at Mindful Ambition.    Thank you Caitlin for sharing your story with us.

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If you would like to share your story here on the Voices of MBC blog, contact me using the form below.  I will get back to you with all of the details.

Until next week,

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2 comments

  1. Thank you so much Lesley for having Caitlin share her story.

    I do have a question. I see on Caitlin’s blog it says she had Genetic Testing 10/7/10 : BRACA1/2 negative, yet strong familial Hx of ovarian and breast cancer.

    My question is–did Caitlin have genetic counseling with a certified genetic counselor prior to the genetic testing? Caitlin is so young and there are so many other gene mutations and testing panels beyond BRCA. For example, just to name a few–Lynch syndrome, Li-Fraumeni syndrome, Cowden’s, ATM gene mutation. Since 2010 there are MANY new gene testing panels/emerging genes. This information could prove helpful for any siblings/family members of Caitlin. RESOURCE: http://findageneticcounselor.org National Society of Genetic Counselors to find a certified genetic counselor

    I was compelled to chime in on this.

    Warmest Regards,
    Amy Byer Shainman
    The BRCA Responder @BRCAresponder
    BRCA1 pos. Hereditary Cancer Health Advocate
    http://thebrcaresponder.blogspot.com

    Like

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