Hi friends, this is Amy. Stephan, along with my friends Kirsten & Andrea will be running this page, but I wanted the opportunity to share my story. It’s surreal to be writing for my own Caring Bridge page while I am running one for my mom. But I know this is a great tool to keep everyone up to date. I’m using this opportunity to share my symptoms and the timing as I want all women to know the signs of ovarian cancer. If it happened to me, it can happen to anyone.
Thank you for reading & for your love & support.
XO, Amy
MY STORY
On Sunday, February 13, I noticed I was bloated and my abdomen felt tight & uncomfortable. But it was Super Bowl Sunday, and I’d planted myself in front of the many yummy dips, so I laughed it off as “dip belly” for the next several days.
The following weekend I was still bloated, and I had some abdominal pain. But hey, we were in Nashville with great friends, and were eating & drinking all the good things.
Come March, the bloating continued, and the abdominal pain was sometimes really severe. I’d had diarrhea for several weeks straight. But other times I felt fine! I still hadn’t regained all of my senses of taste & smell back since having a breakthrough case of Covid in August, so in late January I started using supplements that other people had found success with. I figured one of them was probably why my tummy was so weird, so I blamed it on that & stopped taking them.
Then you know…life. As a mom, if my kid had stomach issues for a month, I’d have brought him in to see a doctor. But bloating & intermittent abdominal pain were so random. Of course I googled it - a lot. And almost everything I read suggested IBS as the most likely culprit.
I told Stephan I was going to tackle this thing in April if it was still happening. Then my mom had a medical emergency & I flew to North Carolina & stayed by her side for 8 days while she was in the ICU and had a kidney biopsy and a craniotomy to biopsy brain lesions. While I was in the hospital in NC, I had some pretty severe abdominal pains, some that literally took me to my knees. After one of these episodes, I texted a friend who is a NP. She suggested Prevacid and highly recommended I get an ultrasound from my gynecologist asap. I called my gyn but she had moved practices. Surprise, surprise, it fell by the wayside as I focused on Jake’s end of senior year & my mom’s very unusual medical issues. The plan was to move Mom & Tim out here to Colorado, and I was putting a lot of energy into finding them a home.
In late April, I called our insurance’s telehealth line. By pure luck, I got a retired gastroenterologist assigned to me. He listened to my history, and told me that I seemed like a “very nice young lady” and that he wanted me to see a gastroenterologist asap. If they could not get me in within 3 weeks, I was to go to urgent care immediately.
I made an appointment with a gastroenterologist - 8 weeks away.
So I went to urgent care that very day. They took X-rays, but didn’t find anything. I was prescribed an antispasmodic and told it was likely IBS, and to see a gastroenterologist.
The antispasmodic helped somewhat with the pain. But the bloating was getting worse.
May 12 I went shopping for a dress for Jake’s graduation. Everything looked awful as I literally looked 5 months pregnant. I couldn’t even take a deep breath. I came home & complained to Stephan, who said enough is enough. You need to go to the ER tomorrow so we can get this treated asap.
I very reluctantly went to the ER on Friday, 5/13…I almost didn’t go, because aside from the bloating, I felt ok. The doctor ordered blood tests, told me it was probably IBS, but she was going to order an abdominal CT scan just to rule things out.
The hospital was busy and I had to wait in the waiting room attached to an IV. I felt ridiculous. Then they said they finally had a bed for me. Minutes after they brought me into a room, the ER doc came in & told me that my CT scan was highly suggestive of metastatic ovarian cancer.
I was stunned. I called Stephan, and Jake drove him to the hospital. The doctor went through it all with us again. She also ordered a CT scan for my lungs, which look ok. She arranged for us to see a gynecological oncologist the following Tuesday.
Getting diagnosed with cancer on a Friday at 4:30 pm sucks.
Stephan & I met with the gynecological oncologist on Tuesday 5/17, and asked a million questions. Dr Landers was patient and informative. We put together a loose plan, but first I needed a biopsy to determine the subtype of ovarian cancer, and I also needed a port installed for chemo. Mehgan, Dr Lander’s nurse, somehow worked some magic and was able to schedule both together the very next morning. We left the hospital feeling better than we had going in, and rushed off to Jake’s senior parent luncheon, which we were so grateful to make.
Biopsy was done 5/18, and they installed the port at the same time.
Jake’s graduation was the next day & I was determined to make the next few days all about him. He graduated in 85 degree weather & we all got sunburned!
Friday, 5/20 was Jake’s graduation party - it was perfect even with the blizzard that dropped a foot of snow!
But now it’s back to reality. The biopsy confirmed I have Stage IV high-grade serous epithelial carcinoma. This is the most common subtype of ovarian cancer, which actually works in my favor as treatment options & research trials.
I will be starting chemo on Wednesday, 6/1. I’ll get 2 drugs, considered platinum therapy. Chemo will take about 6 hours, then I have 3 weeks off to let the chemo work. Repeat, repeat.
After the 3 rounds of chemo, I’ll have what’s called a debulking surgery. It’s a total hysterectomy, a splenectomy (the cancer has spread there), an omentectomy, removal of metastases on my liver (it’s there too) and any lymph nodes that have cancer cells.
Recovery is tough. But getting that cancer out that the chemo hasn’t gotten rid of it important.
I’ll then have 3 more rounds of chemo to kill anything left.
I have a “suspicious” spot in my right breast & another in my neck. We need chemo to wipe these out.
So the summer is going to really suck. But I will beat this. I love my life & my family, my friends and my animals and I’m not done here.
I am so grateful that I ended up going to the ER on Friday the 13th. It truly was my lucky day. If I hadn’t, I’d still be waiting for that GI appointment at the end of June. And they still might not have found this! Yes, I wish I’d gone earlier but I’m not going to waste energy dwelling on that - what’s done is done.
But please, my girlfriends, if you have even 1 symptom of ovarian cancer that lasts a month, please go to an ER or to your gynecologist and insist on either a CT scan or an ultrasound. I only had a few symptoms and as they were intermittent, I didn’t think I had anything serious. Ovarian cancer is called “the silent killer” for a reason. There are NO screening tests for ovarian cancer, so you need to listen to your body & be your own advocate.
Symptoms include: ✅Persistent bloating ✅Abdominal pain ✅Change in bowel habits Lower back pain Frequent urination An abdominal lump you can see/feel Loss of appetite Fatigue Pain during sex ✅Feeling full quickly (this just started with me in the last 2-3 weeks)
I have NO risk factors. 50% of ovarian cancer happens in women 60+. I have no family history. I’m at a healthy weight, I’m active & I’ve never been a smoker. I also have done everything right to reduce my risk! I had 3 kids, I breastfed. I had a tubal ligation. And I took birth control pills for 20 years!
Yet.
It still happened to me.
So please please please, listen to your body. Treat yourself like you’d treat your kids if something is off.
I am being surrounded by love and I WILL beat this. Thank you all for loving on me & sending prayers. 💙
LIVESTREAM LINK FOR Amy Frazier Maikkula’s CELEBRATION OF LIFE
For anyone wishing to join us virtually, here is the link for the livestream. While the event starts at 2 pm, the formal program will start at 3 pm, this Saturday, February 10.
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