Thank you for visiting my fundraising page.
My story is known to most of my family and friends, however per the goal of ovarian cancer awareness, it goes as follows:
I did notice one classic sign of ovarian cancer, bloating, towards the end of 2012. I wrote it off to peri-menopause, when apparently your body goes rogue with varied effects. And I was unusually tired. My naps regularly hit the 2-3 hour mark, but again, peri-menopause, I figured. It wasn't until the spring of 2013 that I noticed something was really off.
We're going to get a bit graphic here - be forewarned - I noticed an unusual vaginal discharge. I ticked off the usual suspects of a yeast infection and other unsavory possibilities and was left with a big question mark. As my gynecologist had retired, I was in the market for a new doctor. On a whim, I called Mayo Clinic here in Phoenix. It was kind of a novelty thing, "I went to the world famous Mayo Clinic." I spoke to a kind woman who said they could see me in about a month. I explained that I didn't think I could wait that long (intuition), and she was able to schedule me in a couple of weeks.
I went to the appointment, talked to the doctor and explained what was happening. I thought it was unusual that she didn't examine me, but she went on to explain that given my age and being peri-menopausal that it was most likely endometrial tissue causing the issue and I'd probably wind up having a D and C. Yay, I thought, a procedure that most women experience once in their lifetime. To verify her suspicions, I was sent to the hospital for a vaginal ultrasound.
The technician didn't say anything as she performed the procedure, and I went home. A couple of hours later the doctor called: the ultrasound had revealed two masses, one on each ovary, and they had some vascularity to them. I immediately knew she was talking about cancer. A CT scan two days later confirmed the diagnosis.
Fred and I met with my gynecologic oncologist about surgery. He explained that I needed the surgery NOW, and two weeks after my initial appointment, I was under the knife at Mayo. They call it debulking, but I tell people I was spayed. They removed my ovaries, tubes, uterus, cervix and part of the omentum, the covering of the organs in the abdomen. My doctor used the DaVinci machine, which allows a few small incisions to be made rather than one large cut. Less invasive, it allows for quicker recovery, and it lived up to its reputation. I was ready to go that evening, but I had to stay at least one night in the hospital. I was amazed at how well I felt after the surgery: I felt better than I had in months!
Then followed the placement of a port-a-cath, a silicone "pillow" placed under the skin in the chest wall for infusion of chemo drugs. I was thinking of undergoing chemo without the port, however my mom changed my mind by telling me that I was young and didn't want to blow out my veins so early in life because I might need them later. She was right, of course. I also heard from a couple of nurses who had seen the results of intravenous chemo infusion and said it really will ruin arm veins. A few weeks to heal and I started chemotherapy with carboplatin and paclitaxel.
I knew I'd lose my hair. My stylist had cut it shorter in preparation, and I figured it would fall out over the course of treatment, which was once every three weeks, six sessions total. I was wrong: it started falling out about 10 days after my first treatment, and my brave stylist didn't waver as I cried in her chair when she shaved my head. For a few days after, I'd scrub my head and the leftover stubble came out. Fred was sympathetic and one afternoon, quietly closed the master bathroom door and cleaned out the shower drain. He didn't want to upset me, my sweet husband. My sister said that I had dad's head, and as he did shave his head, we had a good laugh.
Being bald in Phoenix during summer isn't bad, as it turned out. I toyed with the idea of buying a wig, but it's so hot and the little knit caps I'd sewn pre-chemo worked out fine. I learned to enjoy the feel of a cool breeze going over my head while in the pool and started using my grandma's vintage brooches on my caps. And I'm not ashamed to say that I really enjoyed not having to shave my legs and underarms everyday! But I mourned as my eyelashes fell out and my eyebrows thinned dramatically. I learned to pencil in my eyebrows, and liked the result so much that I still do it, lol!
After chemo, it took a while to get my strength back, close to a year. I decided to become active in our local chapter of the NOCC, and I'm so glad I did. I went in for my check-ups, quarterly CT scans and blood work. I was doing well until my CA125 tumor marker test began rising in 2016.
While doing some room painting, I noticed a pain in my lower left abdomen/pelvic area. I told Fred about it, and we agreed that if it continued for more than a week, I'd call my doc. I wasn't scheduled for CT for another month, but one week later, the pain was still there and I called to schedule my CT a bit early.
The results showed another mass, which was almost certainly cancer. Due to insurance and the holidays, we scheduled surgery for January 2017. My surgeon was the same as my first procedure, which was comforting. He explained that the mass was starting to press on my lower left descending colon, which may or may not result in an ostomy bag after surgery. I was not thrilled at that prospect, but went into surgery with positive thoughts. A very skilled surgeon, he was able to remove the mass - along with half of my left descending colon - without giving me an ostomy bag, whew!
I started chemo again in February, another 6 sessions 3 weeks apart with carboplatin and doxil. This time my hair would thin, but not completely fall out. Turns out I think I would have preferred losing my hair after experiencing the side effects of the doxil...
Turns out the oncology nurses call doxil "The Red Devil." It looks like Kool-Ade but there's nothing Oh Yeah! about it. After each infusion, I was sick for a week. It was horrible nausea and general crappiness. And it just didn't affect me: my family had to watch me endure the sickness, which took a toll on them as well. But I made it through, and am back under Mayo's surveillance.
I also started taking niraparib, a "parp inhibitor," which is new to the market as of this year. It's supposed to interrupt the DNA of the cancer, crippling it and not allowing it to reproduce. It has its side effects as well: I was taken off of it last week due to low platelet counts. I'll have weekly blood tests, and when the count comes back up, I'll resume the regimen, most likely at a lower dosage though.
In the meantime, I'm living my life, and attempting not to live it in fear. That can be very difficult, but I'm grateful and lucky to have a wonderfully large support group comprised of family, friends, great doctors and a wonderful therapist.
And it's my friends and family that I call on now to support me in meeting my fundraising goal of $1000. An early detection test for ovarian cancer must be found to spare tens of thousands of women from going through what I have in the last 3+ years. A PAP TEST DOES NOT DETECT OVARIAN CANCER! And donating will help fund research into finding a cure for this horribly sneaky disease, which will benefit generations of your mothers, sisters, daughters and aunts to follow. Please help me in the fight against ovarian cancer and Break the Silence!
Love to all,