THANK YOU to all of our survivors and all of our Teal Diva family for celebrating ALL of our diva's this month. It's been such a joy to hear everyone's story and journey. If you missed any of the stories shared, or if you need some encouragement come back to these posts. We have two more ladies to highlight. Meet Sarah a 6 year survivor and Angie a 7 year survivor.
I was diagnosed in March of 2016 at the age of 39. I had a large tumor on one of my ovaries that would turn out to be cancerous – Stage 3C. I had abdominal surgery to remove the tumor; and when pathology finally came back, would show cancer. A month later, my GYN oncologist went back in thru the same long, abdominal scar to do a complete hysterectomy. I would then go thru 6 rounds of chemo – cisplatin, and taxol. My chemo regimen was distributed thru both a chest port and an abdominal port; which is a little different than most people experience. By the end of September 2016; I was finally done. And so far, at each appointment, my CA125 continues to be stable with no evidence of disease. This September will be my first check-up with my regular doctor vs my cancer care team.
I generally celebrate each year marking both my diagnosis and completion of treatment. Not really anything I do outwardly to celebrate; more of an acknowledgment to myself of how far I’ve come; how grateful I am; and how blessed.
I think what I’d tell someone who is newly diagnosed is the importance of advocating for yourself. If you don’t like what you are hearing from your doctor or medical team, you most definitely can get a second opinion. The most important thing you can do is find a doctor/care team that listens and really hears you. Trust your gut!
After treatment, I was most looking forward to getting out and traveling. I had missed trips with family and friends during my treatment, and I couldn’t wait to go out and see the world again.
I’ve connected with other survivors through a local support group in my area. I am fortunate to live in Minneapolis; where we have a great organization – MN Ovarian Cancer Alliance. I started attending the monthly support group meeting, and from there have now met other wonderful survivors who are friends for life. I wouldn’t wish this disease on anyone; but the people I’ve met, the friends I’ve made…..I wouldn’t be where I am today without having gone thru ovarian cancer!
I'm surviving & living with..
Stage 3c Ovarian
Stage 4b Fallopian
High Grade Serious
Last day of chemo 4/29/20
No Evidence of Disease since last chemo.
I believe sharing my story is extremely important & helpful to other women.
I'll never be cured, be in remission. My oncology team including Palliative Care do not discuss statistics, odds or compare me to others. On my strong insistence my doctor explained to I have maybe 5 yrs & that's not 5 good years, with the expectation of recurrence within the 1st 6 months to a year. We've never discussed or had that conversation again. I could never tell another woman it's an easy process, in fact it's extremely physically & mentally challenging & will change you forever. I encourage others to fight & power through, if not you'll never know what's on the other side. I'm very proud of myself & even though I have my lifelong daily struggles. I was able to live to see the other side.
Tell your story of how you were diagnosed.
I had been experiencing some minor issues that my PCP diagnosed as interstitial cystitis. Also, several times in the months before my diagnosis, I had experienced extreme flank pain and soreness with an overall sense of malaise. I could barely roll over in bed during two particular times. I went to the doctor for that and was diagnosed with a stomach virus. Eventually, I was sent to a gastroenterologist, and he believed that my issues were coming from my gallbladder. I had a laparoscopic cholecystectomy. During that surgery, the surgeon found evidence of an old bleed on the omentum. He did several biopsies of the area and my liver. All came back normal. After all of that, my bladder issues continued I felt as if I had a UTI, so I asked my PCP for a urology referral. She said that was the next step and that she wanted to do a physical exam first. I hopped on the exam table, and the minute, her facial expression changed. She could palpate an abdominal mass. I asked her if it might be scar tissue from the gallbladder removal; she said, "No. It's too big to be scar tissue." I had a CT the next day. My doctor called me and said that the CT showed a large mass and that it appeared to be ovarian cancer. I was shocked, stunned, and scared beyond belief.
Off to the gynecologist who did bloodwork and transvaginal ultrasound. At the follow-up, he talked to me and said that it was 50/50 at that point, that it could be a benign mass or it could be cancer, but that my CA125 blood work results were not in yet. The mass was huge 25cm. While he was in the exam room with me, the nurse came in and handed him my CA125 results. He said the odds just changed. My CA125 was over 5000. I don't remember if I even said goodbye. I got up and left. The next few days were a blur of fear, terror, and prayers. I had an adopted 5-year-old son, and I was a single mother.
Next stop - gynecological oncologist. I had been given a name by a friend; I knew that doctor that I wanted. It just so happened that my gynecologist did refer me to the same; doctor. I knew that God's hand was already at work. I was scheduled for surgery with the man who saved my life. At Wake Forest Baptist Medical Center in Winston Salem, North Carolina, I was treated by Dr. Samuel Lentz. He told me that there would be no definitive diagnosis until the tumor was examined during surgery. June 5, 2015 - my surgery. I'm not sure how long it lasted, but afterward, I learned that the tumor was cancerous and that it was attached to many organs - my bladder, colon, and had invaded the uterus. Instead of resecting anything, this man spent hours scraping the tumor off and managed to remove it intact and without spillage. God's miracle - God alone did that. When the biopsies came back, none of the places where the tumor had been attached showed signs of cancer. More miracles. A 25cm tumor attached to internal organs, yet those places didn't show cancer. I was diagnosed with Stage 2, Grade 2 Endometroid Ovarian Cancer.
Do you celebrate your cancerversary?
I don't actually "celebrate" my cancerversary. I now have check-ups once a year, and I thank and praise God every single time I get my CA125 back and the numbers are within normal range. When I had a CT and was declared NED, I did buy a new car and do my National Board Certified Teacher Renewal process.
What advice would you give to someone newly diagnosed?
Pray. Have faith. Ask God for healing and for help, for strength.
Some things that I did:
got online and found a support group. I read stories of hope and healing from other survivors
made a list of chemo tips -- from others who had been through it.
took notes. It helped me to process things at a time when everything was so overwhelming.
took a trusted friend with me to major appointments.
What were you looking forward to most post-treatment?
More than anything, I looked forward to normalcy - to having some hair, eyelashes, and eyebrows. I looked forward to being to better care for my son and feeling well enough to give more to my career and friends.
How have you connected with other survivors?
I've done Relay for Life several times. Team Inspire is a place where I connected with survivors online. Some even reached out beyond that platform via Facebook. They were a great support. I also try to make sure to reach out if I hear that someone has been diagnosed with cancer. It's a way to give back because much has been given to me.