In Her Own Words

by Miriam Hoelter for Ovarian Cancaer Allianace of Oregon and Southwest Washington

I was 54 and my life was going along smoothly – busy as a school counselor, two sons out of college, a third son almost finished, and my fourth son just beginning college - life was very full and very good.

On the other hand, I was not really feeling well. I had constant indigestion; looked very tired and pale; and was exercising but felt like my stomach was bloated. I would eat a few bites and then be uncomfortably full. I didn’t know the symptoms of ovarian cancer, and explained all away with getting older and being pre-menopausal. I was busy and happy, so I mostly ignored these discomforts.

Then I experienced a sudden pain in the middle of the night, and began to throw up. At the hospital, I was subjected to exams and CT scans. I had to give a description of my pain over and over, while I received advice from nurses on how to control the pain, as no anesthetic was offered until the source of my pain was identified. Finally, I received news that I had a rather large mass on my right ovary and that I would be admitted to the hospital.

The next 24 hours included morphine (what a relief!) and plans for surgery as soon as a recommended ob-gyn was available (as she had two babies to deliver). She performed the surgery at 1:30 a.m. with some verbal preparation beforehand. “It is probably benign,” she says, “as large tumors often are.” She said if it looked like cancer, she would call in a gynecological oncologist she trusted to help with the surgery.

Without my realizing it, the ob-gyn doctor had already alluded to perhaps the most critical piece of my long-term survival, which was connecting me with a gynecological oncologist!

That recommended gynecologic oncologist was with the ob-gyn when she met with my husband to report on the outcome of the surgery. His presence signaled to us that cancer was indeed suspected. Lab tests brought confirmation five days later, and I received a diagnosis of Stage IIIA Ovarian Cancer.

Chemotherapy treatments (taxol and carboplatin) were begun about three weeks following surgery. When my hair, cut short to prepare for the hair loss, started coming out, my husband and my third son Micah shaved it down to about a quarter of an inch. I wore a wig, which not everyone chooses to do. Part of this was my desire to look normal.

I returned to work after eight weeks and the first two treatments. About three days of leg aches followed each treatment, but working kept my mind off the discomfort.

After the third treatment, my blood count became an issue. I began daily trips after work for a shot to build up my white blood cells. A blood clot, located by my port, developed and a second shot was added each day to counter that.

It was a great relief when I finished the six treatments. However, because I had no hair, no eyelashes or eyebrows, I looked like a cancer patient for many months after the treatments had finished. That part was hard for me.

Once my body had a chance to recover, things went very well. I feared a recurrence but moved forward as if I had licked the cancer. The next year I put myself into an exercise program to lose the 10 pounds I had gained during treatment. I lost those 10 and then about 10 to 12 more. I kept up a pretty faithful routine for about 3 years. I was in good physical condition, and with a feeling of empowerment to move forward, I set out to do just that.

In fact, at my five-year appointment, my doctor said we might consider me cured.

The CA 125 blood test results from that appointment brought me the news I did not want to hear. My count had gone up above the normal range. We monitored the CA 125 counts for three months then I started treatment again in June 2006.

Since then, I have been on a clinical trial of Abraxane; tamoxifen (pill) for three months; Gemzar for about eight months; topotecan for five months; and Doxil for about four months. There were a few short breaks in there as well.

In August of 2009, I started treatment of carboplatin, a treatment my doctor was actually keeping in reserve for me. Carboplatin finally took me back into remission and we stopped treatment for almost ten months.

In December 2010, my CA 125 counts moved from 30 to 100. I could have waited but decided to go back into treatment right away. I had three treatments of cisplatin, a sister drug to carboplatin. This brought on more queasiness and resulted in a blood clot. I added Coumadin to help with that.

Having things other than cancer to think about has been a real plus for me mentally and emotionally, and in keeping depression and resentment at bay.

I like to think it was good for the children at the school where I worked to see me lose my hair, yet continue my work with them while wearing a wig. The students and I experienced my hair regrowth with humor and grace. I thought that this might make cancer less frightening and give them more hope if someone from their own families might ever encounter this disease.

In the beginning when I still worked, I had people tell me to rest more, maybe to quit, and to allow my body a chance to recover. My doctor would say that rest does not cure cancer. He kept encouraging me to take this journey any way I wanted to. For example, when we have wanted to take trips, he just worked the chemo schedule around our schedule.

I have met some wonderful people, especially the talented and giving medical staff of all levels who have, and continue to serve me. One of my jokes has been, "You know you have cancer when all your new friends are medical personnel!"

I recall with gratitude a nurse who took the time to change my bedding one night after my initial surgery. While she was doing that, she told me that both she and her mother were survivors of cancer. She from breast, her mother from ovarian cancer. That conversation still stands out for me as one of the most helpful during that difficult time.

Life and cancer go on.

I am now 66, and in my 12th year of treatment. In May 2012, a metastasis to the brain and probable cancer in my right eye were found. As a result, I underwent 15 whole brain radiation treatments followed by bi-weekly taxol treatments six months later.

This past summer (2013), my medical team and I suspended bi- weekly treatments of Gemzar. This may change again, as my family and I continue to have conversations with two oncologists and my radiologist.

As I contemplate what is ahead, I want to live as long as I can. Our youngest son will be married next summer. I would like to share in that joy.

Miriam Hoelter, November, 2013

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