My last entry in August 2015 (http://goo.gl/xzW91x) focused on my upcoming hysterectomy and emotional reactions. I mentioned that I was diagnosed with colon cancer in May, Lynch syndrome in June, and endometrial cancer in July. Here, I hope to share in greater detail about what I’ve lost, found and claimed since I first heard “cancer”.
My first cancer diagnosis came in May 2015. After 2 trips to the ER for unendurable abdominal pain, I was finally referred to a GI doctor who scheduled a colonoscopy. I shared my family history of colon cancer, but the doctor seemed convinced that my pain was most likely caused by colitis. After all, at age 32, I was 20 years younger than the youngest person in my family to be diagnosed with cancer – who was an uncle, not a parent. As a result, the doctor put me on a low-residue diet for the month up to the colonoscopy. I couldn’t eat more than about ½ a cup of solid food a day without either vomiting or having horrible pain – broth and sugared sodas gave me enough energy to continue my job as a teacher.
After the colonoscopy, my doctor explained that a 6 cm tumor was causing my terrible pain and had almost completely blocked my ascending colon. Regardless of whether it was cancerous or not, he would have to remove it soon. All I could say, over and over again, was, “Cancer? But I’m only 32”. Pathology confirmed that the tumor was cancerous and I had 31 cm of my colon removed, as well as my appendix.
While recovering in the hospital, my oncologist recommended testing for Lynch syndrome. I signed the paperwork, had my blood drawn and tested positive for Lynch syndrome.
As I stared at the high chances I had for all types of cancer, I felt my anxiety climbing. When I saw that the suggested preventative treatment for endometrial and ovarian cancer was a hysterectomy and oophorectomy, tears spilled down my cheeks. Single, with no children, my hopes and expectations of one day having a family of my own were blown away by the hurricane of cancer lurking in my genes. Even if I found a man the next day, would I dare risk my child carrying this Lynch syndrome gene?
My oncologist said that as long as everything was fine, I wouldn’t need a hysterectomy for another 8 years and that it was possible to test embryos for Lynch before implantation by using IVF techniques.
I then went to the gynecologist who found a polyp the size of a pencil eraser in my uterus. A polypectomy and D&C were scheduled, and the pathology report came back partially precancerous and showed the beginning stages of cancer. My gynecologist recommended having a hysterectomy and removal of my ovaries, since I had an elevated risk of ovarian cancer.
Shock. Fear. Anger. Grief. Even now, those emotions wash over me. Time seemed to speed by; yet, I was frozen in place. The fear of the cancer returning, worsening, spreading was modeled by a coworker dying from ovarian cancer a year after “beating” breast cancer. I didn’t want to get cancer again, but I was also worried about what would happen after I lost my ovaries. Other than a close friend from college who had walked a similar road with endometriosis, and my newfound online friend, Georgia, I seemed to be the only one so concerned. My oncologist, gynecologist and gynecologic oncologist all seemed more focused on reducing my cancer risk rather than quality of life. So, I moved forward thinking that my reproductive system would not be removed unless I was in immediate, grave danger.
I almost asked for my ovaries to not be removed. Due to my parents’ concern about the risk for cancer, I didn’t. I wept while receiving the anesthetic. There were no complications in the surgery, and my gynecologic oncologist said that my pathology report was completely clear. I smiled and shook his hand, but inside, I was screaming.
I could have waited. I didn’t need this surgery now. I could have kept my girl parts. But there was no going back. My uterus and ovaries were gone – I was sterile and had lost a part of myself that I could never reclaim.
I felt like I had lost my soul on the operating table. I would cry and be unable to stop – sometimes falling on the floor or vomiting from the intensity of my sobbing. I felt dead or that I needed to die. It was only because of Georgia – her bravery in documenting what she went through – that I had any clue that this wreckage that used to be my life was caused by my new hormonal imbalance. With her as an example, I hounded my gynecologist to up my prescription. When my gynecologist suggested that I had enough hormones and just needed to get used to it, I demanded a blood test. The next day I had a larger estradiol prescription. When I asked for a progesterone prescription, as well, my gynecologist wanted me to try a sleeping pill. Only when that pill was found to make me suicidal did my doctor agree to giving me a progesterone prescription. It took about 4 months and a LOT of calls and visits to my doctor to finally get a combination that makes me feel somewhat normal. Even so, I’ve lost about 1 in. in height, have hot flashes and have gained weight. It would be worse without them, though. I doubt I’d be alive.
Since my hysterectomy, I wear makeup more. I’ve grown out my hair. I feel like I’ve claimed my femininity in a new way. To look back and focus on the horror and tragedy of the past year was to die, and I chose to live. For years I’d put off things – no more. While none of us know how much time we have, I figure that if I live long enough, I’m bound to get cancer again. I don’t want to feel like I’m facing death again without being fully alive.
I met the love of my life in December who proposed in February and we were married on the Sunday before Memorial Day – exactly 1 year and 1 day since I got the pathology report confirming colon cancer.
I told him about Lynch syndrome on our first date and it didn’t faze him. He has no children either, but together we hope to adopt, perhaps an older child who would struggle to find a home otherwise. Some might say we rushed things, but why wait when you know what you want? Even more than most, we have to take things a day at a time.
Two weeks after we were married, I had my annual scans and colonoscopy and everything looked good. Thankfully, I don’t need another colonoscopy until next June.
Until then, I live.
Thank you for sharing your story with everyone, Elizabeth and best wishes on your recent marriage!
I could not do my advocacy work and help people like Elizabeth without the generous support of Pathway Genomics.
Pathway recognizes the importance of ihavelynchsyndrome.com’s mission of spreading awareness about Lynch syndrome and filling in the medical gaps for those with it after genetic testing has been completed.
To learn more about Pathway Genomics and Lynch syndrome, please go here: https://www.pathway.com/
Founder and Executive Director of ihavleynchsyndrome.com