Marion Gust

July 2024

My Story begins on May 5, 1998, my 44th birthday. I got a call from my obstetrician-gynecologist (ob/gyn) about the results of my annual mammogram. Suspicious spots were detected on my right breast…NO! It can’t be true! My doctor put me in touch with a breast cancer specialist. He performed an ‘open biopsy,’ and unfortunately, the diagnosis was breast cancer. I broke down and cried. Surgery was a lumpectomy, followed by 33 radiation sessions, Monday-Friday for 6.5 weeks.

Five years later, in 2003, it was rinse and repeat on my left breast, lumpectomy, and radiation. The same type of breast cancer: ductal carcinoma in situ.

Since then, all my mammograms have been clean and clear!

Eighteen years later, during the spring of 2021, I started having abdominal problems, bloating, minor irritation, and frequent bowel movements. This continued throughout the summer. Then, I contracted Covid at the start of September. After recovering from Covid, I saw my doctor the third week of September. After the examination, she ordered a CT scan for 3:00PM the next day. At 5.20PM, 2 hours and 20 minutes after the CT scan, I got the call: You have ovarian cancer.

I was stunned! My husband was stunned! We were shocked and bewildered! This couldn’t be happening, both of us thinking: ovarian cancer, the silent killer. I met with the gynecologic oncologist the next week, and ‘debulking surgery’ was scheduled for the following Monday, including the removal of my gall bladder. I was petrified, not knowing the extent of my cancer, and I wouldn’t know until after the surgery.

Since Covid was rampant at the time, my husband was not allowed in the hospital at all. He dropped me off at the front door at 5.30AM the day of the operation and was unable to visit post-surgery. He picked me up 5 days later at 3:00PM on Friday, again at the front door of the hospital. Those were 5 long, lonely, and uneasy days.

Wow! Were there some surprises during surgery! After the gynecologic oncologist opened me up, he had to pause for a moment, then re-set himself as he was looking at something he had never seen during thousands and thousands of surgeries: my colon was not in a normal location.

A normal colon goes across the top of the abdomen from the right, down the left side, then around and out. My colon goes down the right side, then across the bottom of the abdomen, up the left side, takes a hairpin turn, then down, around, and out. I was born this way. Part of my colon was fused together via blood vessels in my lower left side, so he removed 4-5 inches of the colon and was able to reconnect it with no problems.

Also, I don’t have a duodenum, a little tube connecting the stomach to the intestine.

I had a partial hysterectomy in the early 2000’s to remove the remaining organs. The omentum was removed, as was all the observable cancer. A separate surgeon was called in to remove the gall bladder, which had cancer on the surface. Two infusion ports were installed, one in my upper right shoulder and one in my upper right abdomen. The surgery lasted 4.5 hours and involved lots of replacement fluids.

My diagnosis was stage 3C serous ovarian cancer. My CA 125 blood marker number for ovarian cancer was 6,827! 40 and below is good.

I started chemo 10 days after the operation. The usual infusion of chemo came through the port in my shoulder, and my abdomen was flooded with chemo via its own port. My doctor said he ’threw the book, the kitchen sink, and the whole ball of wax” at me.

My chemo drugs were Carboplatin and Taxol. Chemo was very hard, with constant nausea, complete hair loss, and bad, bad neuropathy in my lower legs and feet. I would get severely dehydrated after chemo, so 2 days after every infusion, I was back at the oncologist’s office getting fluid infusions. It seemed as though most of my time was spent in bed, my recliner, or at the oncology office. I walk with a cane today. I expect the neuropathy to be with me for the rest of my life.

Post operation and chemo, my CA 125 number was down to 18! YEA! It was so nice to be off chemo, hair growing back, and no more nausea…however, after 4-5 months, my CA 125 number started going up again, and it was going up a little too fast.

Round 2 of chemo started in January of 2023. It involved a different chemo cocktail than the first round via the shoulder port only, as the stomach port had been removed after the first round of chemo. The chemo drugs this time were Cisplatin, Gemzar, and Avastin. This round of chemo had far fewer side effects than the first round, and it was a lot easier to tolerate. No hair loss this time, much less nausea, and no increase in neuropathy.

At the end of chemo round 2, my CA 125 number was in the low 20s. In May 2023, I started a regimen of Avastin, an infusion every three weeks for a year. My main side effect with Avastin has been bad sinus drainage. My CA 125 number is 85 as of June 2024.

My Avastin infusions ended in early May 2024, and after 2.5 years, I’m taking the summer of 2024 off from meds. I’ll be getting another CT scan in mid to late August to see what’s happening. My cancer is still active, and the oncologist says there will be more chemo in the future.

I had a gene test in the spring of 2023. There are no abnormalities in my genes. I was relieved no bad genes were passed on to my 2 sons. The only instance of cancer in my family is my father’s father, who died of stomach cancer.

I was born in Germany and grew up in Orofino, Idaho, from ages 1-22, well within the Hanford Nuclear Cloud. For over 20 years, from 1954-1976, I breathed the air there, ate the food grown in the ground there, drank the water from there, swam in the Clearwater River…how ironic! I really don’t know if the Hanford Nuclear Cloud is the cause of my cancers, though it could be a factor. We can’t think of any other major factors. (Bad) Luck of the draw?

My oncologist said I wouldn’t be here today without the surgery and chemo infusions, so I’m currently living life to the fullest! I have a 7-month-old granddaughter who is the cutest baby ever! I just returned from a 10-day trip to Germany to visit relatives and had a great time despite my neuropathy slowing me down a little. In August, we’ll be in Canada for a family get-together.

I have a lot to be grateful for and have many plans for the future. I can’t thank my family and medical care team enough for all their support during this time.

Let’s hope a cure for cancer is right around the corner!