Still Renegotiating Life

My story of survival I believe started at the time of my birth. Although I won’t take you down that long and winding road I will tell you it has been one hell of a journey. I was adopted at birth by a wonderfully loving and nurturing family. They are my family through and through. However, there was always an empty spot in my soul with a question of where I came from. At the age of 18 I found my biological mother. I was not received well by her and was refused any answers to any questions, including medical history or who my biological father was. I continued to search until I found more of my biological family and by the time I was 28 I knew of the maternal family history for female cancer that was quite prevalent.

The next year I gave birth to my second child and the thought of getting cancer like the women in my gene pool, had started to weigh heavily. In 2001, age 32, I went for my first mammogram. What do you know…I had a tumor. Given the family history it was removed and found to be benign. But I won’t lie…it scared me. I went back in 2002, age 33 and I had another tumor. Very small, but this time it was Ductal Carcinoma In Situ. Carcinoma was all I heard. I was truly paralyzed. I was informed that this type of cancer did not spread and was treated with a lumpectomy, possibly some radiation and Tamoxifen for 5 years. I was lucky! Wasn’t I? Could they tell me 100% it wouldn’t come back or spread? I had two small children and a wonderful husband. I couldn’t handle the thought. I confided only in my mother. She was my rock. I didn’t want to worry anyone needlessly anyway. They did say this was going to be a relatively easy thing to take care of. Besides, that’s my nature; I am the caretaker. I had the surgery telling everyone it was just a benign tumor and nothing to worry about. It was an early diagnosis, so I had no radiation and started on my Tamoxifen. I kept my mouth shut and pretended it had never happened. After a while I was living a semi-normal life again, talking to my mom every now and then about my fears and relaxing to her comforting words of wisdom, “everything will be OK”. Within two months my mother was diagnosed with a rare form of ovarian cancer they had not diagnosed early and her with symptoms she ignored, as many women do, she was stage 4. My mother died from ovarian cancer 7 months after my diagnosis. I was devastated and even though we were not biologically connected, we were connected in a way rarely seen in this world. Now I had to be strong on my own. I had to be strong for my children who had lost their beloved grandmother and I had to be strong for my older sister (my mother’s biological child), as she was not handling this loss at all. Besides, I believe that focusing on all of this took my mind off of what I now thought to be the inevitable for me. Two years later my biological mother died from breast cancer. A year after that, my biological grandmother passed away and one biological aunts was fighting the last leg of her fight with breast cancer as well. I had no one to tell. I was screaming inside but trying to put my fears aside and live every day to the fullest.

In October 2005 I wasn’t feeling very well. I had my annual PAP and while I was there I expressed to my doctor that I wasn’t feeling myself. My mammograms had been clear for several years and there was nothing to suggest something was going on anywhere else. My PAP came back clear and my doctor suggested that maybe I could alleviate some stress by cutting back on my work. The HPV campaign was in full swing at that time, so I was screened; No HPV Ten months later I woke up one morning and had a sinking feeling something was very wrong. I had no symptoms other than fatigue and had started a discharge a week or so before. I was thinking maybe hormones were the issue as I hadn’t had my cycle in a few months. I went to the doctor that day. It was a Friday and by Monday the verdict was in; I had cervical cancer. The question now became what type of cervical cancer did I have? Everyone was in agreement that something looked strange about my tumor, but no one really knew why. I started my research and was sure I did not have your normal garden variety cervical cancer based on my history, the wording of the pathology report and the description of the tumor. I pushed and pushed until they sent the tumor off for more pathology. It came back; I had Neuroendoncrine Small Cell of the Uterine Cervix (pathology also remarked there was no HPV in the DNA of the tumor). Could it get any worse than that? No, actually as far as cervical cancers go…it couldn’t. Now what?

The diagnosis of Small Cell Cervical Cancer and the prognosis for survival are very grim. There is very little known about this disease and the treatment or outcome are dubious. With normal Cervical Cancer treatment options (surgery, then chemo with radiation) small cell usually spreads to another part of the body within a year or two from diagnosis. About 100 women are diagnosed with SCCC/LCCC in the U.S. each year. Of those about 80% won’t see the two year mark. Of the 20% that do, 50% will not see the 5 year mark. Each time the cancer spreads you have less and less of a chance of beating it. That was it in a nut shell. I had to get rid of it completely and keep it from spreading to other parts of my body. Keep myself cancer free. If I could do that, then I would live….right? No guarantees here, just like every other cancer. I knew I had to tell the family this time as the treatment would hit me so hard there would be no hiding it. My son was 8 and my daughter was almost 13. I started to tell the kids that I had cancer. I wanted to explain everything so there would be no questions and I never wanted them to feel like I was hiding anything, which would only instill fear. My 8 year old cut me off in mid sentence and said “all I want to know is if you are going to die?” (He has Aspergers, and everything with him is very cut and dry…straight to the point). I was taken aback and the first thing out of my mouth was “no”. Both kids hugged me and walked out of the room. I have to tell you that I know this battle has affected them, but you would have never known it by watching them on a daily basis back then.

I remember lying in bed and thinking “you should have never told him you weren’t going to die. Anything can happen in life. You could get hit by a bus and die tomorrow”. That’s when it dawned on me; this wasn’t about living or dying, this was about surviving life, just as I had always done. Just as I knew I would continue to do. It was a stumbling block; a hurdle. But nothing I couldn’t get through. There was no expiration date stamped to the bottom of my foot and I did not have to be a statistic. God had a plan for me and just because I had cancer, did not mean it was what would ultimately kill me. I was going to survive this and anything else that was thrown my way. In 2007, after 7 months of harsh chemo and internal/external radiation, I was cancer free. I had survived the cancer, financial ruin and in the midst of all this, my biological aunt passed from her battle with breast cancer. But I was still here.

Although I had survived, I was being suffocated by the isolation of a rare diagnosis, so I set out to prove the doctors wrong once again. They told me I would never meet another living soul with this cancer. In August of 2008, I found Melanie. Together we started a website for women who had SCCC. Through this journey and finding other women who were diagnosed with Small or Large Cell Neuroendocrine Cervical Cancer, we have forged the way for a social media support group of wonderful women, inspiring each other every day from around the world. We have lost many along the way, but it is still inspirational to be able to know these women and be part of something so wonderful, as we fight together.

In January of 2009 I was re-diagnosed with SCCC. I never had a hysterectomy the first time around as Small Cell is very aggressive and does not wait to spread. There simply wasn’t time, so we started treatment. Oddly enough the cancer came back to my cervix, my right ovary, my peritoneal lining, a tumor pressing against my bladder and bowel and possibly some nodes in my abdomen. I had chemo and then a hysterectomy that I wouldn’t wish on my worst enemy. But today, I am almost 5 years cancer free (Septemeber 28th marks the day)! If not for the sisterhood I belong to, I don’t think I would have made it. Through the tenacity of a few of these women, we now have a fund and research Sponsored by MD Anderson Cancer Center. We are so fortunate they have taken up our cause. We have no celebrity backing or government funding. We fund this research one dollar at a time. And, I am happy to say we are making headway. We, as a group, have been able to fund a global online tumor registry and have launched an informational and inspirational website for women out there looking for accurate information. Where you once “googled” Small or Large Cell Neuroendocrine Cervical Cancer and all you found was “poor prognosis”, you now find hope. My wish is that someday, with the research MDA has planned, we will find a cure. For now I hope the information being gathered will bring us a set protocol for a better outcome of survival. Molecular testing of the tumors has shown to be very promising with some of the women in our group for survival. So the fundraising is focusing on providing that for as many as possible. What the group lacks in numbers it makes up for in heart. Together we can do anything.

In my humble opinion, sometimes survivor-ship is the hardest part of this journey. For me cancer has touched every aspect of my life and I still struggle with health issues, the psychological damage to myself and my family as well as still paying medical bills from more than 5 years ago. But I, (we) are prevailing. It is definitely an adventure and although I wouldn’t use the word “grateful” when describing how I feel about being diagnosed with cancer, I wouldn’t trade this journey for the world. My life after these diagnosis’ is so exciting and enriched with the people and experiences I have had, that I truly feel I am the luckiest person alive.

Earlier this year I had, what was thought to be a nodule removed from my Thyroid. It turned out to be a very small tumor, Hurthle Cell Andenocarcinoma. Yep…thyroid cancer. Again caught very early by a random PET scan I have regularly, a couple of times a year. No type of radiation and an iodine scan showed no spreading. Whew! Ok…so at this point I guess I pretty much know, that cancer is probably a part of my life and intends to walk in and out every now and then. But again, it doesn’t matter. I have this gut feeling I am here to stay; just another bump in the road.

I write a blog, I post all over social media, I speak here locally and sometimes afar….but I do all of this not to make a living, but because I should do it. If my story reaches one person facing some seemingly insurmountable obstacle in life and inspires them to keep moving forward, then maybe I am fulfilling the plan God has for me. I write. That’s what I do. Not the best at it, but I have been doing it since I could. It is cathartic for me and I will be writing until I can’t write anymore. The opportunity to touch someone is motivating….but I write just to write. Thank you for letting me share my story here. To all you fellow warriors out there…here’s to living life, loving those around us and fulfilling our destinies.

**BTW, I was tested for the BRCA gene and although my biological family has been plagued with BC and even I have had it, I do not Cary the gene. **

www.renegotiatinglife.com
www.necervix.com