Community Member Spotlight: Kamali
AdvancedOvarianCancer.net is dedicated to highlighting the stories and experiences of community members living with ovarian cancer. Kamali's ovarian cancer story began in November 2019 after experiencing the early warning signs of ovarian cancer. She was shocked to learn that she had stage 3c ovarian cancer and was positive for the BRCA2 gene.
Since her diagnosis, Kamali's advocacy message is all about prevention, education, and support. She wants others walking in her shoes to know they are never alone.
This is Kamali's story...
I was diagnosed with stage 3C ovarian cancer in November 2019. During the preceding two years, I complained to my gynecologist and informed him that my menstrual cycle had become irregular. I also experienced post-coital bleeding, frequent urination, and bloating.
In June 2019, after my third visit in seven months to my GYN, he ordered a transvaginal ultrasound. Ultimately he said that all looked normal, save some pesky uterine fibroids. He assured me that now in my 40’s, I was simply perimenopausal. He provided me with a referral to an interventional radiologist, who could perform a routine fibroid embolization. It was that doctor who discovered that something was awry.
Recently, I read the results from that June 2019 ultrasound. I found that it was indicated that my right ovary could not be detected and that I needed to be followed up with an MRI.
Be your own advocate!
Hysterectomy, chemotherapy, and PARP inhibitor
In November 2019, I underwent a radical hysterectomy, a resection of my colon and intestines, and removal of my appendix, and lymph nodes.
From December 2019 thru April 2020, I received two chemotherapy agents (Cisplatin and Paclitaxel), administered both intravenously and directly to my peritoneal cavity, via an intraperitoneal port, affixed, under my skin, to my left ribcage.
I was found to have a mutation in the BRCA2 gene. My geneticist was able to determine that my genetic chain is not fully broken and that an environmental factor led to my diagnosis. The only probable cause was having been exposed to carcinogens during the 9/11 attacks in NYC. In May 2020, I started maintenance therapy in the form of four daily PARP inhibitors (Lynparza).
I didn't face my diagnosis alone
At the very beginning of this, I was in shock and had no experience in the ways of cancer life. Decisions had to be made and there was an overload of data, medical terms, and medical appointments.
My sister-in-law understood that despite being Type A, I could not do it alone. She accompanied me to medical appointments, took copious notes, and asked questions. As treatment wore on, chemo-brain made it difficult to retain important information.
Identify that person in your life and appoint that person as the primary contact (after you) for your doctors and the medical liaison to the rest of your family.
Look after yourself and your wellbeing
To those of you newly diagnosed with ovarian cancer (or any life-altering medical journey) - one piece of personal advice that I would give you is to protect your energy. I had people in my life who leaned on me, even when I was physically and emotionally depleted and running on “empty”.
Make no apologies - energy vampires must go.
Advocacy is about prevention and education
I share information with anyone who will listen and explain that going to your annual GYN checkups does not mean that you are screened for all gynecologic cancers.
I designed a t-shirt with a chart of the five gynecologic cancers and their respective symptoms on the back. I wear this t-shirt so that while standing in a queue, on the subway, etc., people will be able to get a quick lesson. I have had several people ask if they can photograph the back of my t-shirt.
I also use social media as a platform to remind people to get their cancer screenings. To date, I have had three people reach out to me to thank me for nudging them to schedule their annual medical appointments. Although thankfully not diagnosed with cancer, their doctors have found gynecologic issues. This makes me feel that my fight has not been for naught.
Advocacy for me means PREVENTION.
Grieving the loss of who I was before cancer
I believe that anyone who has had to embark on this cancer journey will need the assistance of an experienced therapist.
My wonderful therapist, who works with oncology patients, is helping me navigate the grieving process and the loss of the person I was “BC” (“Before Cancer”). Therapy and a low dosage of anxiety medication have helped me navigate the cancer waters.
She is also teaching me how to implement boundaries. I am the reliable person amongst my family and group of friends. I am learning how to say “no” to others and say “yes” to myself.
Saying yes to myself means taking time off from life to be alone. This alone time allows me to recalibrate.
Connect with others who understand the journey
It is important that you surround yourself with people who are on a similar journey and can understand the specifics of what you are experiencing.
I have met some of my very best friends (Cancer Family) through group sessions at Red Door Community (@RedDoorCommunity). They have groups for people specifically living with a gynecologic cancer.
@BRCAstrong is another organization that I support for all the good that they are doing within the cancer community.
I am always happy to speak with anyone at any stage of their ovarian cancer journey (@kamali.chandler). I may not always have the answers, but can certainly listen and sit with you in your sadness or help you find the humor and joy, even in the small things.
I was diagnosed with...