SILENT NO MORE!

On January 5, 2003, I was diagnosed with ovarian cancer. I had been back and forth to the clinic for over two years. In 2001, my husband Randy had taken me to the emergency room with my leg so swollen that my ankle rolled over the top of my sneakers. The swelling would go down only to come back again with no explanation of why. An ultra sound was done to check the blood flow of the veins in my leg, but nothing detected. Later, we were told this was very common when the cancer spreads to a lymph node.

One of my biggest complaints was fatigue and abdominal pain. It sent me to see my doctor on many occasions. In 2001, we had been building a new house so the fatigue and feeling of having the flu would get blamed on that. I would chalk it up to working a full time job and all the time spent working on the house. Finally in December 2001, we were in our house and actually both of us were tired. However, my fatigue would not go away. Off I would go back to the clinic, where they asked if I was depressed. No, I said, life is good other than feeling worn out all the time. They asked about stress at work and also reminded me that I was almost 50. I went home again with no answers.

That winter it seemed like every couple of months I was in the clinic and by spring, I was getting pretty sick and starting to have more stomach and bladder problems. I was told it was probably from constipation and it was suggested that I try using Metamucil. I went from walking four miles a day to hardly being able to walk a mile. The doctor reminded me that in 1999, they did an ultra sound and it showed a cyst on each ovary, and they were probably causing some of the pain. He was right, I was dealing with constipation, the ultra sound showed a cyst on each ovary and many women have bladder problems as they age. I went home again, but not quite satisfied with the answers and starting to feel a bit like a hypochondriac.

By mid summer when I would eat, my food wanted to come back up, and the pain and pressure was terrible. Many trips were made to urgent care and office visits complaining. First, they thought it to be the flu, finally, in June 2002; I was diagnosed with acid reflux and put on Nexium. This helped some but not a lot and boy was I needing more sleep. When I would lie down in bed, my lower back hurt so bad I slept poorly.

I finally started asking more questions and for more tests. In October of 2002, my liver counts were high and the doctor asked if I was taking a lot of Tylenol. Nope that was not it as I was on Celebrex. An appointment was scheduled to recheck it in a month. I asked to check my thyroid also as I was gaining weight and dealing with so much fatigue it was getting the best of me. TSH was checked and in normal range. I pushed them to check T3 and T4 counts. With my persistence they did, and one of them came back very high. Now I knew something was definitely going on in my body.

We are now up to November 2002, I couldn’t walk very far without a lot of bladder leakage, I was doubling over from what was called constipation or gas pains, I had to unbutton my pants when I would sit very long, couldn’t sleep at night from all the back pain, and gaining weight in spite of not being able to eat much. Finally, in December I saw the doctor again, I figured for sure he was thinking I was a hypochondriac but I could not take anymore.

He asked me if I was doing a lot sit-ups as my abdomen muscles were so hard, nope not doing sit ups I told him. Finally, an ultra sound was scheduled for December 26, 2002. I knew from all the questions they were asking during the ultra sound that there was something wrong. My doctor called me at home that night to let us know a CT scan was scheduled for January 3, 2003. Sunday night, January 5, I got a call from him telling me I had two large tumors that looked cancerous. An appointment was made for me to see a gynecologic oncologist on Thursday.

Randy and I were devastated, but hung on to the thought that it wouldn’t be as bad as it sounded. Only to find out it was worse than we could have ever imagined. I had a tumor on each ovary one was 9x7x6cm, the other was 10x7x5cm and one actually wrapped around my appendix. There was a tumor on my spleen that had herniated into my colon; the cancer had spread to my liver, upper abdomen, and a 4.5cm tumor on a lymph node. Surgery was scheduled for January 24, 2003. Welcome to stage 3C grade 3 ovarian cancer.

My husband, Randy, my children and their spouses, one of my sisters and even the Pastor of our church drove down to be with me before surgery. The last people I saw and prayed with, so many people to support us. The surgery lasted about 7 hours and I spent several hours in the recovery room. I had lost a lot of blood and my pulse was very high. I thought they were fretting over someone else but finally realized it was me. Eleven days later, I finally went home, weak but hopeful. We had survived the first leg of this journey.

I started chemo the beginning of February, that is when I found out my ca125 was 1,987 prior to surgery and had come down to 500 after surgery. Life looked very promising even though I ended up with a bowel blockage and spent most of February in and out of the hospital and my abdomen was filling up with fluid. I had 6 liters of fluid drained the first time and then every 2-3 weeks would go in and have another 3-4 liters drained. We thought it was from the cancer, but the CA125 was dropping and the fluid build up continued. Finally, IV Radiology looked at my ct scan before I was drained. They discovered it wasn’t cancer but was the largest lymphocele they had ever seen. A drain was inserted into my abdomen and I wore a leg bag for the next 4 ½ months and received TPA daily. They also did a chemical wash to scar and shrink the lymphocele. This went on from July to the end of November, but that is a whole other story. :)

I completed 8 rounds of taxol/carbo on July 17, 2003. We had a huge celebration even had fireworks. We believed I had beaten the odds and was cancer free. Praise the Lord and pass the blessings back to everyone who prayed and supported us. Life was good.

I went to 3 months check-ups instead of monthly. The October check up was good but showed my tumor markers going up, but still in normal range. The CA125 was rechecked in November and another climb. My next visit was the first of February and it showed another increase and now out of the normal range. It appeared I was dealing with a recurrence.

I started chemo again. My husband, Randy, thought I should focus my energies on getting well and not on work. I agreed as hard as it was to leave, and retired on August 26, 2003.

When I finished Topotecan, in November, my CA125 was back down to 17, but only stayed down for 7 weeks. I then went on Doxil and that also brought my tumor marker down to 17 but again it did not stay, there was a 3-month remission. In November, I started daily taxotere, but my numbers continued to climb, and the cancer continued to grow.

We met with the doctor, on January 25, and were told the cancer is all over in my abdomen, Gemzar treatments were started. I asked if the chemo would shrink the tumors and was told he does not feel at this time it will shrink it, but maybe it will slow it down. It was a hard blow. He explained that I was coming to the time that I will probably end up in the hospital off and on and needed to know to what extent they should try to keep me alive. This question took us by surprise, but understood he needed to know. We were asked if I wanted to be put on breathing or heart machines. I told him no. Of course I cried some more, you would think the tears should have run out by now. However, for anyone that knows me, knows I have not given up yet, I guess it is the stubbornness in me. I was then switched to Gemzar, which I thought was working, but even when the ca125 went down, the CT scan showed more seedings and growth. As I write this, I am now on Cytoxan/Avistan combination and it appears to be working. At least my CA125 has dropped dramatically. I am so grateful to have the medical team I have, one that does look outside the box and fights with me as long as I want to fight.

Now it’s time for a review: 1999 cyst on each ovary, 2000 swelling started in one leg, 2001 fatigue and flu like symptoms, which never went away, 2002 terrible abdominal pain, constipation, incontinence, acid reflux, fatigue, excess gas, abdominal bloating, painful intercourse. I had almost every symptom listed and each one was looked at as an individual problem, never connected. All of the symptoms blamed either on age, menopause, work, stress and other external activities. I’m not blaming my doctor as he was as ignorant of the signs and symptoms as I was, I just wish a ct scan or ultra sound were done to look at my abdomen and not put off until it was so bad.

I hope sharing this with you helps raise your awareness, and will help someone get a much earlier diagnosis. Early diagnosis makes a huge difference. Ever since my diagnosis, it has been my goal to help heighten awareness in our rural Minnesota area. I write letters to the Editors every year, sharing my story whenever an opportunity presents itself. I encourage woman to take charge of their health, for we really do know our bodies best.

I remain hopeful and know the Lord will continue to give me many opportunities to make a difference. Each day now is looked upon as a gift. A gift of time to create memories, for this is a gift everyone can give each other. Sometimes we forget the simplest gifts are treasured the most. I believe one of the greatest gifts we can give is the loving memories we create in each other’s hearts and life.

The following is a quote by my sister, written to me with much love, that I read everyday. “This is God’s morning. I have the strength of the Lord. God has the power to cure and make miracles. My faith gives me power. My prayers and all those that are praying for me give me strength.” I read this everyday!

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