Late last spring, in the midst of our kitchen flood and remodel, I had some lower abdominal pain. After palpating my abdomen, I found a large lump below my belly button. After a few doctor appointments and an abdominal ultrasound, it was determined I had a fibroid cyst. On July 21st, 2014, I went to the gynecologist who reassured me my situation wasn't a big deal - many women have these, treatment is a hysterectomy. Mine was large and I had two choices, laproscopic or open abdominal (a c-section minus the gift of a baby to care for). During our pre-op appointment, my doctor explained she thought I should go laproscopic because there would be a faster healing time, with a decreased rate of infection and I would lose less time off. I was ready to sign up until she said, "Oh..and I need to tell you there is a surgeon on the east coast who had this procedure..and hers came back malignant. When we do this procedure we use a morcellator ( a machine that grinds the uterus for removal laproscopically). With malignancy, morcellation increases your cancer staging and metastasis rate because it drastically spreads cancer cells. The MD on the east coast is on a war path to get all morcellators removed from the OR."
She went on to explain that 1 out of 40,000 women with fibroid cysts will have malignancy - this type of cancer is called Leiomyosarcoma. My doctor fully believed I would not be that 1 woman "You are so healthy, have no history other than the previous uterine ablation, I am not worried about you at all." I reminded her this came from out of nowhere - which is a red flag. She agreed but still encouraged me to go laproscopic. I told her, "No, It's not worth the risk - I prefer to go open."
Because she didn't believe it to be urgent, I wasn't scheduled until 2 months later. I didn't push because my kitchen was a nightmare, we were living in a hotel, and I wanted to work as much as I could, to create a cushion for the six week loss of work. On October 8th I had the surgery and all went very well. A week later, I received the phone call that the pathology results came back..."I am so sorry to tell you this, it was malignant...thank God you were insistent on not going laproscopic." My stomach dropped, I was in complete disbelief. With the snap of a finger, I was no longer just in recovery, I was now a cancer patient.
I immediately had a bunch of new appointments and tests; CT scans, Gynecological Oncology consults, Cancer Counseling, Genetic Counseling. They determined I needed a second surgery. During the first surgery, I elected to keep my ovaries because I was nowhere near menopause and I wanted to keep it that way as long as I could. With the new diagnosis however, the likelihood of metastasis is great and the ovaries are a logical place - they had to go. Three weeks later, I had another surgery. My surgeon tried this procedure laproscopically but unfortunately I had already developed so much scar tissue, I had to be opened again. Two C-sections in a month is brutal, not to mention, instant menopause on top of everything else. I keep telling myself all of these different experiences are simply making me a better nurse.
It feels very difficult for me to ask for support. I am a caregiver myself and have been so healthy, I never imagined I could be in this place. I have worked as an RN for 6 years, with the last 5 of those years as On-Call, a choice we made because of our young children. I wanted to be able to go on field trips, to chaperone away camps, to volunteer in the classroom or in their school, have holidays and summers with my kids. By being On-Call I had the best of both worlds as a Mom and an RN. However, this all meant I went without the benefits of sick leave, PTO (Paid Time Off) or disability. We had these things in place for my husband, but not for myself. I do not get paid unless I work. We have attempted to apply for short-term disability, but it has been denied due to now having a pre-existing condition. I am not eligible for disability for three years post chemo. Right now, I am not released to return to work until late April early May due to the high risk of infection in my area of nursing. We have been living on half our monthly income since October 3rd and if all goes well with my treatment, that will end in May. The medical bills and monthly expenses are quickly adding up. Our insurance doesn't cover all the extra modalities such as: mindful mediation for cancer patients, nutrition for cancer patients, naturopath oncology, acupuncture and massage therapy or reiki.
I was urged to create this account by friends and family who want to help. Every dollar counts for us, especially during the holiday season. If you cannot donate financially, please pray, wish, hope, sing, dance, chant, howl, meditate - whatever it is you believe - please do that for me and my family. And if you have friends or family elsewhere, please share this link and/or ask them to add my name to their prayer groups. I have someone praying for me on nearly every continent. I want that to keep going, so please spread the word and defeat this disease!
Thank you so much for all your love and support, it really does give me greater strength.