Marty's Story: Vulvar Cancer

Recorded July 19, 2002

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My name is Marty, and I am 65 years of age. I currently live in Sarasota, Florida, but I've just been here three years. I lived most of my adult life in Columbus, Ohio, or rather the suburbs of Columbus. I moved here because my mother was ill. She had Alzheimer's or a form of dementia, so that I would have no contact with her unless I came down, and so I did. I'm married for the second time. I was married for 30 years, and my husband divorced me for a younger secretary. Then I remarried, and I have been married for 14 years. I have two adult children. They are 40 and 32. My husband has three children. They are younger, 22, 21 and 18. None of them live with us.

Symptoms Trigger a Visit to the Doctor

Regarding my cancer, I'll start at the beginning. A year ago, in January, I went to the primary care physician for my annual checkup. I had had a problem with a fungus toenail, and so I asked for medication. They gave me the kind that you take on a three- month basis, and I take it for 10 days, and 20 days you're off of it. However, it makes you very vulnerable to yeast infections. So I took that, and during that time that I was taking it I had some problems around the vagina. I had a lot of itching, and I had even some nodules that appeared. However, I kind of discounted them, because I thought, "Well, this is just a product of taking the medication." And so I didn't do anything about it.

After the three months were up, and it seemed to get worse rather than better, then I thought about doing something. However, it was kind of the heart of our season back here, and I was working, very busily working, and so I didn't call immediately to the gynecologist and waited about two or three weeks. The first time I could get in was in July. In fact, they had tried to give me August or September, and I said, "No. I really need to get in much earlier than that. I have a problem." And they said, well July was the soonest I could get in.

And so I went. It was the third week in July. I went to the doctor, and she looked at it and asked me why I had waited so long. Well [laughs], you know the problem. So she was sure it was cancer but wanted to take a biopsy, and referred me to a cancer center in Tampa. So they did the biopsy and called back for the results, and they kind of went back and forth. Yes, it is. No, it isn't. And I got about three different opinions from that.

I had, in the meantime, gotten a referral up to Tampa, and I went to see the doctor there. He examined me and was not sure--said that it could be vulvar cancer, but that is very rare, and possibly it could not be. He took a needle biopsy, and the needle biopsy came back negative. He said that he needed to do an exploratory anyway, and he set up the operation for September. That was the soonest that he could get me in. So, by this time--why, this was the middle of August, with going back and forth. So this was fine with me.

I decided that I would take a trip before that time and went out to San Diego to see my daughter, who was finishing up at San Diego State, and her husband is doing graduate work at the University at San Diego in physics. He currently teaches there. And I had a wonderful time getting away, getting my mind off myself and all the things that were going on.

Surgery, Diagnosis and Other Major Events

And so I came back on a Friday, and the following Tuesday, which happened to be 9/11, I went in to have my surgery. As we were driving to Tampa, we heard on the radio about a plane hitting the tower in New York, and it just seemed very unreal. I thought it was a small plane. Didn't understand what they were talking about, with the whole situation the way it was that somehow it wasn't very real. However, when I was checking in and doing all the paperwork, they had the television on. As I was signing my living will, the second tower went down. It was quite an occasion and kind of a hard thing to deal with at that time. But anyway, I got through it.

I went through the surgery. The surgery went well, and that Friday I was due to come home. However, Gabrielle--they called it a hurricane but then lowered it to a tropical storm because it was at hurricane strength when it came on shore. However, it did come on- shore very close to where we live. We lived within a block of the intercoastal, and it came through, and it also spun some tornados. One of the tornados came right through, in the area where we live. So my husband was unable to get to Tampa. In fact, he had to evacuate at six in the morning and was not able to even get back to the house that night.

So, he came the next day and picked me up, and we got home to our house with no electricity and no phone. And because in the aftermath of the storm, it was still cool so that I could stand to be there. Finally some neighbors came over with a generator, so at least we didn't lose our food, but we weren't able to run the air conditioner or much of anything else. So by Sunday the sun had come out again, and so friends took me to their house where there was air conditioning, where the power had come back on. I stayed there until Wednesday when we finally got our power and our phones back on. So I had quite an introduction to both the wonderful world of cancer and a hurricane at the same time.

The biopsy showed that my cancer was very deep, and I don't know why the false negatives, but that seems to be part of the type of cancer that I have. It was suggested that I have my lymph nodes out on both sides of the groin, because they needed to check to see if the cancer had advanced to any other parts of my body. I was recovered well from the surgery and was feeling better than I had felt in some time and really didn't want to go in and have the surgery on the lymph nodes. But I was convinced both by my doctor and friends that it was the best way to go, because I'd never know, and it would be so much easier to treat the cancer if I had the advance warning and not letting it go until it was too late.

So reluctantly, on November the first, I went in and had my lymph nodes removed on both sides of the groin. That was a Thursday. I came home on Monday, and on Tuesday, I came home with drains on both sides and in a great deal of pain. Tuesday, my incision turned bright red and the drain started looking cloudy, and so I called on Wednesday to the doctor and said, "I think that I need to come in." But they had planned on me coming in on Thursday, and they said, "Oh, well, why don't you wait until Thursday."

I went in Thursday and they admitted me, and I was in very serious pain at that time. They gave me immediately IV antibiotics. I had a very severe staph [Staphylococcus] infection and, well, they didn't know it immediately. They knew I had an infection and so they kind of moved me about the hospital. They had me down in bone marrow on Saturday, but the nurse realized that I was in a terrific amount of pain and that things were not getting any better, and so she did have them do a culture on what had come into one of the drains. And a doctor came in on Saturday night and said, "I think we can send you home." And I said, "No, you can't, because I'm very sick." And the next day they came in and said, "The culture came back, and you have a staph infection. You have to go immediately into isolation."

I went into isolation for a whole week, which was one of the worst things that I have ever been through in my whole life. I was so very, very sick, and I couldn't sleep because the IV was so intense. The antibiotics that they were giving me hurt my veins. They hurt through every part of my body. It was a terrible, terrible experience, and yet they couldn't seem to get the infection to stop. Finally they aspirated on the right side, the same side that I had been operated on and where the tumor had been removed. They knew that there was a pocket of infection in there, but they couldn't get it out. They finally sent me home as I was kind of losing the will to live.

Three days later, the incision spontaneously opened and started to loosen or whatever--you know, the infection started coming out. I called and my husband was at work, and so I drove to Tampa, which is 75 miles, and had them look at it. They opened it up further, and they said it was just like Vesuvius. It just kept coming out and out and out. And they would have kept me over, only it was the day before Thanksgiving and so they sent me back home. So I drove home. It was quite an experience. I did start feeling better, and I thought that the worst was over with. I had a home nurse come in twice a day to do the packing. But I was on the road to recovery and started to feel so much better, and thought the cancer was just a little blip in the road and that now I was going to be all right, and that no more would I have any problems with this vulvar cancer.

A Recurrence Coincides with Husband's Illness

I had my three-month checkup on March the first. When I went in, I was full of expectations. Oh, this is one of the little blips along the way. My mother died in December, the first week in December. I lost my job that I had gone back to work part-time, but I lost that job because they had replaced me, and they didn't have any part-time work for me. So I started the year cancer-free, I believed--however, without a mother and without a job. I did get on unemployment. Then my husband had a problem with diverticulitis and became very, very ill. In fact, he had probably been ill most of the time since fall while I had been [ill], myself and he was rushed to the hospital, stayed a week in January, and then was operated on in March.

So just with that background, I went back the first of March for my checkup with high hopes, thinking that everything was fine. Now, I was just going to concentrate on my husband and everything would go well. Just about the time that my husband went in the hospital, they came back and said that there was a problem. And then I went back, and they did some biopsies. They came back negative, and so I went back in May. When I went back in the end of May, they told me that I was going to have to have another operation--that it had returned. In the meantime, I had tried to look. It's very difficult to look in that area and I noticed the difference. It had come back on the other side. I tried to believe that this was just unfinished business and that maybe it was already there before, but apparently this is something that is going to be going on for the rest of my life.

So I had my operations. I had what they call a skinning, a vulvar skinning, which I am not sure exactly [about] but they took a layer of skin that was affected. And this is something that we'll have to watch every few months, and I may be in the hospital every six months or a year or two years, but I will be back.

Reflections on Cancer, Caregivers and Gratitude

I have kind of gone into a lot of detail about what happened to me, but how do I feel? I'm a little sad about the fact that this is always going to be with me, but I'm very thankful that I'm still alive, and I do feel good. I don't have pain and I'm able to work and enjoy the people around me. I have a wonderful, strong support system through my church. I have many people that have gone out of their way to do many wonderful things and to help me feel that I'm not going through this alone.

So the things that I receive from God and from the others who are acting on His behalf have brought me through this and helped me to realize how much I mean to other people and that my life is important. My husband has been very strong and very helpful. The first time, he was very sick himself, but these past times he has just been a rock. I am very thankful for his love and his help and his strength to get me through.

I think that I have had so much conflicting information, during the period of the diagnosis through all of this, that I guess the important thing that I would have to tell people is that I wish the doctors could be more forthright. That they would not try to sugar- coat things, but to let me know what is going on so I can deal with it. I find that I have a lot of difficulty working with the unknown.

And also, I wanted to speak a little bit about my husband and about other caregivers, and to watch for the things that happen to them. From just before I went into the hospital the first time in September, he was having a lot of trouble with what he thought were stomach aches. He just couldn't eat, and he was having a lot of problems. He went to the doctor, and although as good as she is, she kind of down-played it because of knowing what was going on with me, and didn't look into it as deeply as she might have. And this continued on through the whole time of my surgery and my recovery and my second surgery, and he thought it was kind of sympathy pains, but yet he never felt well. It wasn't until January when he was rushed to the emergency room and we found out he had an abscess on the colon.

He had severe diverticulitis. He had to have two and a half feet of his large intestine removed. He nearly died. And this could have all been avoided, or at least the severity of it avoided, if we had looked for the signs that maybe he really was sick right along. It was down-played because of me, but it shouldn't have been. It should have been attended to, and so caregivers need to have the attention to themselves, too. Not to think, well, all the focus should be on the person with the cancer. That it is a very important part of the whole thing, the whole care that goes on. Thinking of every member and that each member has a part to play, and that they can be ill, too. So I just let that go out for what others might think about their caregivers, too. If you want them to be a rock, you need to have them all in one piece, too.

Cancer is not fun. Going through a cancer like I have, with the vulvar cancer, that is very rare. Only one percent of--they say right now--of postmenopausal women ever get it, so they don't know much about it. It's hard not to have a support group as they do with other kinds of cancer, especially with the breast cancer. I'd like to be able to talk to other people who have gone through what I have or something similar, so I would just to have their support. I feel some isolation in that respect. So, the more that is known about all types of cancer, the easier it is for the people who are going through it. But more people are living--and I thank God for the fact that this was not a death sentence, but just a change in direction.

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