Amy Kay Lindh

September 2020

At 48 years old I had my yearly pap smear physical and was told all was well. The next month I turned 49. I was short of breath, I had painful periods, my bowel movements were the size of rabbit turds, and my belly area was puffy. Then I began to throw up. I would throw up black spider objects about the size of a quarter with 12 inch long legs and tentacles. I threw up about a couple times a day and then would feel much better. I had digestive issues since I was 26 years old and didn’t think much about this. However, my husband was insistent that I go to the doctor. So March 7, 2012, after teaching a full day, I was sent to my local ER to run more tests than my local doctor could do in our small town. I had a boat load of blood tests and a CT scan. At 8:00 pm the ER doctor told me I had ovarian cancer. My husband cried, and I felt a great wave of relief. FINALLY something was there, and it was not all in my head.

The next day I was at the gynecologic oncologist’s office, and she ran down the treatment options. My original diagnosis was scary: I had a tumor on the right ovary 16 x 18 x 11 cm (the size of a head of cauliflower) and the cancer had spread to my stomach lining and lining of the right lung. My scan showed fluid in the right lung (1.5 liters were pulled off later that day), fluid around liver, clumps of tissue thickening on the upper abdomen, and my bladder being squished. My gyn/onc explained the debulking surgery and the risks to me and my husband. We went home and shared with our boys aged 18 and 13 what surgery I was going to have. My youngest son, Drew, said, “Mom they are going to open you up and gut you like a fish”. He got it.

March 14, 2012, at 49 years old, I had my “debulking” surgery. I had a surgical incision from my sternum to my pelvic bone: #1 total abdominal hysterectomy. #2 bilateral salpingo-oophorectomy. #3 Bilateral pelvic and periaortic lymphadenectomy. #4 tumor debulking. #5 Complete omentectomy. #6 Staging. #7 Placement of an intraperitoneal port. #8 Appendectomy. The nurses call debulking “Rice Krispy” picking. Everyone in the surgical suite gets tweezers and picks out all the cancer. I had an optimal debulking surgery.

Following the surgery I had a power port placed on the right side of my chest. Then I began my chemo treatment of Cisplatin and Paclitaxel . I had 18 weeks of chemo: Week one IV and IP chemo at the hospital, Week two IP chemo only at the hospital, Week three fluids at the chemo suite. I had six rounds of this treatment.

IP chemo is a six hour process that occurs in a room in the hospital setting. First the chemo is heated. The belly port site is cleaned in three separate steps. Then come the pre chemo meds to fight off nausea. Once the chemo is started, I rotated my body like meat on a spit. Every 15 minutes I had to rotate so that I did not burn my insides. Back, right side, tummy, left side, back, etc.. The time I was to be on my stomach, I could not tolerate due to my surgery site and belly port. So I put my head into the pillows and butt into the air. I can still remember the nurse laughing when she checked on me during this position. I had a fabulous chemo nurse. She worked her schedule so she could be there for my treatments.

Weeks 3 through 8 were the worst. There were times I truly thought I was dying. I could hardly stand the pain. When I took the pain meds I felt like I had bugs crawling out my nose. I had to balance the pain vs the bugs. Also, the pain meds made me severely constipated. I tried Smooth Move tea, Miralax, prunes and raisins, laxatives, magnesium citrate (lemon flavor), and Fleet enemas. I had 20 different meds to manage throughout the three week cycle: Take med A two days before chemo. Take med B the day after. Take med C daily, etc. Thankfully I had a very helpful, caring husband each step of the way.

The last few chemo I would cry and beg my husband not to send me. He said I had to do them for our boys. I did complete all 18 weeks. But, it is very hard to take yourself to treatment and withstand all the side effects. Thankfully I had family and friend support, along with a wonderful primary doctor and gynecologic oncologist. I completed all 18 treatments.

August 3, 2012 I was declared No Evidence of Disease (NED).

Also, during the end of my chemo treatment, my gyn/onc had me tested for the BRCA gene. It came back positive. On June of 2013, I had a double mastectomy with DIEP reconstruction, an 11 hour surgery.

The follow up to having ovarian cancer is 3-month check ups, then 4-month check up, followed by 6-month check ups and now yearly check ups. If I have flu like symptoms or anything unusual, I am to call and come in for a check up. I have been blessed and have been NED since 2012. This August 2020 I am 8 years cancer free.

Currently I am an advocate leader for the Ovarian Cancer Research Alliance. I volunteer at a local hospital for a gyn cancer survivor support group. In addition I am a trained Survivor Teaching Students speaker for our nursing school. I believe advocacy can save women’s lives from this disease. Listen to your body. Symptoms include: pelvic pain, bloating, loss of appetite, urinary symptoms, menstrual changes, pain during sex, constipation and fatigue. If you have any of these symptoms, go see your doctor.