Rhonda’s Story

Remarks by Rhonda Oziel to
George Washington University Medical School Practice of Medicine
March 2001

This is the 3rd year in a row that I am speaking to this class. I am really grateful. After I gave one of my talks last year I headed over to the ACC building to get a dose of chemotherapy. Today, I’ve brought my chemotherapy along with me. More about the pump later. Let me begin.

If I had asked my doctor to tell me straight out how long I'd live with ovarian cancer and had I believed it, it’s not entirely clear that I would have survived to be standing here talking to you today. I'd be dead.

The truth is if you pay attention to the statistics, the outlook for women diagnosed with ovarian cancer is not a very pretty one. If diagnosed and treated early, when the cancer is confined to the ovary, the 5-year survival rate is about 93 percent.

BUT, due to ovarian cancer’s “quiet” symptoms, only 24 percent of all cases are found at this early stage. Because of this the overall 5-year survival rate for women with ovarian cancer is only between 35 percent and 47 percent, depending upon the type of tumor. On April 13 I will celebrate 7 years of living with ovarian cancer. And thanks to my doctor, my sheer will and determination, the love and support of my family, my friends, and the support group at GW I attend every week and the other ovarian cancer survivors that I've met through the Ovarian Cancer National Alliance that I am here talking to you today.

Here's what I would like to do today.

First, I'll tell you my cancer story.

Then I’ll talk about how I cope with knowing that I have a finite time on this earth.

Interspersed with my personal story, I'll tell you what I've learned and how I wish you as doctors would deal with your patients. How I think doctors should treat patients.

Here’s my story.

About 7 years ago just around this time, end of February, beginning of March, I put my hands on my stomach and felt some masses. Some lumps. Looking back on it I had some of the silent symptoms--fatigue, bloating, loss of appetite. I have some information cards that tell you the symptoms of ovarian cancer that you can take away with you today.

I went to my gynecologist He did a pelvic exam. Felt masses. Arranged for me to get an ultrasound and set up an appointment with a gynecologic oncologist. That day I think he knew this was a serious situation but he was very calm. He didn't even mention cancer.

The day I met the gynecologic oncologist. He examined me, looked at the ultrasound again. And told me straight out that he thought there was a 90% chance that I had ovarian cancer. In the room with me was my husband and my sister-in-law.

How did my doctor deliver the news? Straight. All I did was take notes and ask about the surgery and what would happen there. I did not ask any questions about the disease. It was hard enough to digest the word cancer. I appreciate bluntness when it comes to things like this--giving bad news. But bad news must be tempered with hope. More on hope later…

Back to my cancer story. I had the surgery. I was diagnosed with stage IIIb ovarian cancer serous papillary cystadenocarcinoma and my gynecologic oncologist removed all the cancer he could see. I had cancer in both ovaries; none in my tubes or uterus. Cancer in my omentum which I did not know I had until it was removed. And I was left with less than a cm of cancer on my diaphragm. There was no lymph node involvement.

Treatment was chemotherapy: 6 rounds taxol/cisplatin. I responded beautifully. And was cancer free for almost 3 years.

How I did feel about all of this.

Scared? Yes. The only thing I really knew about ovarian cancer was that Gilda Radner had died of it. And that she had been very sick.

It took me about 3 months to really read anything about ovarian cancer and to read those really lousy statistics that I quoted to you. I found out that my family knew them but no one mentioned it to me.

7 years ago the Internet was just beginning. And I was hungry for information on my cancer. I found lots of good material from the National Cancer Institute. In the course of my research I discovered a wonderful article on cancer and statistics written by Stephen Jay Gould. He’s an evolutionary biologist who teaches at Harvard. He is the author of at least ten popular books on evolution, and science, including, among others, The Flamingo's Smile, The Mismeasure of Man, and Wonderful Life.

The essay is called the Median Isn't the Message. And there is a copy for you to take with you when you leave. Steve Dunn, the creator of the Cancerguide web site, has reproduced it there. Steve says it is:

“the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, ‘the statistics don't matter,’ and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope.”

The Median Isn’t the Message. You've all studied statistics, right? So you know the definition of the word, median.

Well, in 1982 Gould was diagnosed with abdominal mesothelioma –a very rare and very serious disease. He reports how when he got up after the surgery he asked his doctors what is the best technical literature he could read about his cancer. They said there was nothing worth reading.

Gould is a scientist and intellectual. So trying to keep him away from the literature was a fruitless effort. As Gould tells it he went to the Harvard medical library punched in mesothelioma and an hour later was surrounded by the literature of his cancer. It was not a pretty picture he reports. And he knew why his doctors told him there was nothing worth reading--mesothelioma is incurable, with a median mortality of only eight months after discovery.

Gould was stunned but as he says "If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer…. “I believe he’s talking about me….”

Gould then goes on to talk about medians and curves which being a scientist he knew about. And he figured out that he could be at the tail end of the distribution. That based on his personal characteristics---being young, he had an early diagnosis, the best medical treatment, the world to live for--he would survive. He found hope in that literature.

This is probably the most important bit of patient wisdom I can impart to you today. HOPE. Each patient is a unique individual not a number. In 1994, I was not one of 14,500 women diagnosed with ovarian cancer. And, believe me, the statistics for ovarian cancer in 1994 were grimmer than they are today. I tell every doctor that I meet that I am a statistic of one.

Treat each person that you see as a person not as a disease. Don't think ovarian cancer. Yes, she's gonna die. Yeah, she may die. But she needs hope. And hope is a lot of things. It's being at the tail end of that distribution. Hope is reading those grim statistics and deciding that you have a 50-50 chance of surviving and that you are going to be at the tail end of those distributions.

Give your patients HOPE. Tell your patients the grim numbers if they want to know but assure them that you will be there with them every step of the way fighting with them. Be honest and supportive.

One of the reasons I think I have survived is the love and support I have around me. It’s a security blanket for me. I’m fortunate to have a wonderful family, parents, brothers, sisters-in-law, nieces, nephews, wonderful friends, the angels from the support group I go to every week and the other ovarian cancer advocates that I’ve met.

So, maybe not everyone has such a supportive environment as I do. But I think you as physicians can provide some of that support for your patients.

Give your patients as much information as they need. Encourage them to ask questions.

You can listen to your patients. Let your patients talk to you. Sometimes all a person needs is to talk to someone. Respond to your patients. Let them know you are fighting with them. And know when to stop talking. Know when your patient needs to be left alone.

A patient has to go through a lot in fighting cancer. Chemotherapy, scans, radiation, getting a port, blood draws, hair loss. These are new experiences for your patient. Tell patients what to expect. Patients are afraid of these things. Fear is paralyzing. You can help your patients learn about what will happen to them when have chemotherapy. What it will feel like.

If you patient is going to have chemo, arrange for him or her to go to the Cancer Center, the hospital, or wherever they will be receiving treatment before the first day of treatment. So they can see the place and meet everyone beforehand. Your patient will be scared enough that first day and being familiar with the surroundings will lessen that fear.

If your patient has never a CT scan or radiation, arrange for him or her to go to the place where they will get the scan or have the radiation before appointment day. Again, familiarity lessens the fear.

Encourage patients to go to a support group. Tell them it could help them survive their disease. If they do not feel comfortable in groups, perhaps you can give them the name of another patient who has gone through the same thing as they are going through.

Also, I think an information packet containing information on cancer, chemotherapy, radiation, side effects of treatment. If your patient does not feel comfortable reading the information right away, maybe they will read it at a later time. Or a family member might read the information.

Let me talk about the rest of my cancer story. All was well for almost 3 years since my diagnosis. And then in 1997 my cancer recurred.

We found some small tumors on my spleen. My gynecologic oncologist advised more chemotherapy. I was still trying to absorb the fact that the cancer had come back and I wanted to be sure of what to do. After doing some research in the library on my own, talking to other gynecologists, and talking with a surgeon about whether or not to remove my spleen, I decided that we should do chemotherapy. Sometimes you have to let your patients decide and come to their own conclusions.

How do I cope? How did I not get depressed? I never really thought I would die. And the reason for that is that the love and support I get from family, friends, and my support group, and all of the people I’ve met through the Ovarian Cancer National Alliance.

The Alliance is a national organization whose mission is to raise awareness about ovarian cancer.

We, in the Alliance, believe that by educating physicians and women about the symptoms of ovarian cancer, we can save lives. We also believe that more research is needed to develop a tool for early detection of this horrible disease. We want a pap smear or mammogram type test for ovarian cancer. I am energized by this work.

How else do I cope?

Well, I'm Jewish and every year on Rosh Hashanah, the New Year I renew my name in the Book of Life. I pray that God will inscribe my name there. The first year I had cancer was very difficult for me. I was still in treatment and I stood in the synagogue and cried because I believed God had forsaken me. That God the year before had not inscribed my name in the Book of Life. I was truly frightened. But I survived treatment and pray every year that my name will inscribed in the Book of Life. I believe in the power of prayer but I'm not an active observer of my faith. My father and mother are religious and they pray for me every Saturday. There are candles being lit for me in churches, too. Every morning when I go out and walk my dog, Fred, I look up at the sky and thank God to be alive.

I’ve also attended spiritual support groups sponsored by the Washington Jewish Healing Network. In fact, I’ll be going to group tonight. I’m convinced I’ve survived this disease because of all the support groups I attend and the strength that I’ve found from knowing other people dealing with similar situations to mine.

Before I said that I never really thought I would die. But that doesn’t mean I didn’t think about it or worry about it. Whenever I would get bad news like my CA125 tumor marker was rising and that I would need more chemotherapy, or when I found out that I would have to have a second cancer surgery, a chill would come over me. It was the deepest fear I had ever known. I was afraid that I would die and be all alone.

In the summer of 1999, my husband, Hillel, who was my biggest supporter in all of this died from complications after coronary artery bypass surgery. It was devastating. I was the one who was supposed to die. Not him. A few months after Hillel died my CA125 tumor marker number rose again and I had to have a CT scan. It turned out OK. But, you know, I didn’t get that chill I spoke of before. Yes, I was afraid but not like I had been before Hillel died. Now, after Hillel’s death, I am not that afraid of dying. Because I know that when I die I won’t be alone, I’ll be with Hillel again and that makes me content. Not that I want to die. There’s still too many things to do.

Back to my cancer story.

In April 1998, 5 months after completing chemo for the recurrence on my spleen we found a tumor on the colon wall. My gynecologic oncologist removed it along with 6 inches of my colon. My whole family was there the day of surgery. I am lucky and grateful to have this support net. Plus my support group friends and my colleagues in the Ovarian Cancer National Alliance were all pulling for me.

Before the surgery and afterwards I was terrified. But yet I kept going. My doctor was great. We agreed we would just keep trying until we got it right. No more cancer.

And we’re still trying. I had another recurrence on my spleen in July of 1998 and had 20 weeks of low dose carboplatin and taxol.

And then at the end of May of 1999, we found something on my liver. So it was back into treatment. I had 26 weekly treatments of herceptin and taxol. I took a chemo break until last July when we discovered more tumors on my spleen and liver. We decided to remove the spleen and get rid of the tumors
on my liver. All the cancer was removed and I spent a week in the hospital surrounding by family and friends. It was a hard recovery but I made it.

Then last December we discovered more tumors on the vaginal cuff. Back into the hospital for another surgery. This time my gynecologic oncologist removed the tumor in the vagina but discovered that there were small seedings of ovarian cancer cells all over my peritoneum. This was the first time he could not remove all of the cancer. We started new chemotherapy. It didn’t work. I wound up being hospitalized with low blood counts and then again with high fever spikes. A CT scan showed that tumors were blocking the ureters in one of my kidneys and that I had more cancer in my abdomen. Plus my stomach was bloated which indicated that I had ascites. Fluid filled with small seedings of the cancer.

In the course of almost 7 years this was the worse news I had ever heard. Last week I started a new course of chemotherapy. A continuous infusion of chemo. Hence the pump. Or, as I call it, my new friend, Claude.

I’ve had a hard time adjusting to the fact that I really will die from this disease. But I’m still coping. I’ve made a list of dreams I’d like to live out before I die. Taking trips with my family, speaking before you today. I’m preparing a power of attorney and a health care power of attorney in case I can’t make my own decisions. These are things I haven’t done in 7 years of dealing with this disease. And I’m going to a Jewish spiritual support group to gain some strength in dealing with what is happening to me. Maybe I’m getting close to the end of that distribution. But maybe I’m not. I’ll be fighting every step of the way.

I am an almost 7 year survivor of ovarian cancer. Cancer is part of who I am.

I am a person with ovarian cancer. Remember all of your patients are people. Treat them as the unique individuals they are. You will feel better and so will your patients.

Thank you very much.

_________________________

Note: Rhonda Oziel, 52, a librarian and webmaster who had worked for the Bureau of National Affairs (BNA) news publishing concern in Washington since 1984, died of ovarian cancer June 11, 2001, at her home in Washington, DC.

She joined BNA as an educational services specialist in its database publishing unit. She went on to hold a variety of posts, including that of senior reference librarian for law and environment from 1990 until 1997. In 1999, she became the BNA's first intranet webmaster. She held that post until her death.

When she learned in 1994 that she had ovarian cancer, Ms. Oziel was confronted with a lack of readily available information on the disease and its treatment. She became a founder of the Ovarian & Gynecologic Cancer Coalition of Greater Washington, which was later renamed OGCC/Rhonda’s Club in her honor. In 1997, she helped form the Ovarian Cancer National Alliance, the advocacy and information group and national organization focused on ovarian cancer. Today, OGCC/Rhonda’s Club, a partner member of the Alliance, serves as the voice of ovarian and gynecological survivors and their families in the greater Washington DC area.