Jerry's Story: breast cancer

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Jerry's experience with breast cancer

My name is Jerry, I live in a small town in Washington State, Port Angeles. I became aware of breast cancer really 19 years ago in 1982. I was taking a shower and found a lump, as so many women do, and went to the doctor, and by his reaction, I knew that something was wrong. Seemed like before I knew it, I was in the hospital with a breast removed and all the lymph nodes they removed turned out to be cancerous, so that that was quite a blow.

Beacons of hope

The wonderful thing that happened, though, was that I was visited in the hospital by two Reach for Recovery people, and I had not known anyone that I knew of who had had breast cancer, so I did not know what Reach for Recovery was. So when they visited me I found that they had been customers of mine. I had waited on them for years, and they were volunteers for the American Cancer Society. I was so elated that these two women had had long term affiliation with the Reach for Recovery program and also were both looking healthy and knew what they wanted to do, which was so encouraging. Because 19 years ago people didn't talk about cancer, well, breast cancer, like they do now. But I decided at that point as soon as I was able I wanted to become a volunteer, and you have to wait a year. At the end of that year, of course, I did become one. When I was in the hospital, I realized that I was going to have to have something else happen to me. My doctor, you know, I have been a patient of his for many, many years, and he has always treated me through everything, but some things, he doesn't know about, so he wanted to send me to the best man he knew, which he did, in Seattle. And the oncologist there, saved my life, literally. He could walk on water I'm sure of it. But my treatment consisted of chemo once a week for one year. But of course because of blood counts, it took sixteen months to complete the year. When he first told me, I thought one year meant one year, but it meant one year of treatment. That many weeks. So I was sort of shocked, but I never missed a day at work during that time. Sometimes I wished I could have, but I think it was so good for me, both mentally and spiritually, to continue to work. And I was so glad that I had an understanding employer that allowed me to work, even at my low times. And when I completed that, with many ups and downs and of course, some days you're really up.

Treatment complications

The first treatment was actually the worst, because I was given Compazine to keep me from becoming nauseated and I was totally out of it when I went home after the first couple of treatments. I would just lie on the sofa and I, my mind was awake but I couldn't move. I couldn't open my eyes. I kept thinking, If the house catches on fire, I won't be able to move. Then when one of my customers came in and she found out what I was doing, she said, You're not taking Compazine, are you? And I said, Yes, and she said, Well, it did the same thing to her. So I quit that, and that eliminated that problem. That's not to say that I didn't have ups and downs and feeling pretty rotten, but I always saw the light at the end of the tunnel. When I finished that, then I had 6 weeks of radiation. I'd drive over to Seattle on Monday, have my radiation treatment and then stay with friends or family during the week and then drive back on Friday. And I did that for six weeks. Well, by the end of the six weeks of radiation of course, I was exhausted, so it took me awhile to get back in circulation. I couldn't go back to work quite as quickly as I had wanted to. You can tell that I love my job. Anyway, when I was able to go back to work, then I just gradually regained my strength. The only thing that I was left with that I'm still to this day, is that when I drive very far, I tend to want to fall asleep. So even after all these years, I'm concerned about driving any long distance by myself. I try to take a friend with me. But if I can't, one solution, which sounds ridiculous, but it works, is I take a large bag of popcorn, and I'll eat the popcorn, one kernel at a time, and for some reason, the hand-to-mouth movement keeps me from getting so sleepy. Ridiculous, I know.

A twist of fate

But after I finished all of those treatments and I was feeling well, and the breast loss, considering the treatment involved, was minimal. I didn't like losing a breast, but I was more concerned with my longevity than my appearance, and I had a wonderful husband, and my family and friends that helped through all this. But I think having support is the most important thing. And I had a group of us that had all been through breast cancer, and we just got together for dinner or lunch occasionally, and talked about things. Really, laughing and casual things, but it was very helpful to all of us. Then, I traveled. Traveling is my love. And I had signed up to go on a trip to Russia, and it was exactly five years and four months after my initial diagnosis, January 18, 1982, and I was feeling wonderful. Well, my doctor's appointment was scheduled for just a few days before my trip, thank goodness, and when I went in they found out, that contrary to how I was feeling, that my cancer had metastasized to my spine. C11. So then I had really heavy radiation to C10, 11 and 12, which has left me with permanent nerve damage. But, I'm still here to feel the pain, right? So of course I couldn't take the trip to Russia, although a few years later, I did go, because I have three grandchildren, and when they are 14, they get to choose wherever in the world they would like to go. And my granddaughter had chosen Russia.

Resilience in the face of adversity

In fact, she was one of the instigators of one of my favorite comments, because in the very beginning, before you can get a "permanent" ( I use that term loosely) prosthesis, we, as Reach to Recovery volunteers, give people just a nylon little shaped thing full of fiberfill, and mine was lying on the counter one day, and my granddaughter, who at that time was only 4, said, "Grandma, what's this poofy?" So I always referred to it as a "poofy", even when I visit my Reach to Recovery patients, because it always gives everyone a laugh and it makes you feel better. Anything you can do to take the fear out is extremely helpful. I finished my radiation and then I started chemo and when I did chemo this time I had to do it, oh when I was diagnosed the second time, the radiation oncologist told me that I was not to pick up anything that weighed more than five pounds. And the thought of going to Russia and having my spine collapse and being in a Russian hospital was certainly frightening, so I guess I didn't resent not being able to go to Russia at that time. When I was ready to go, when I finished the chemo, no, when I finished the radiation the second time around, then I started chemo. Now this is really Chemo, but they put a porta-cath in my chest and he put a double one in mine, which you might think is the ugliest thing in the world; to me, it's a thing of beauty, because I had no veins. The only veins I, the only things I inherited from my little mother were her little veins and her knock-knees, unfortunately. And I'm not tiny and she was.

Common concerns during and after treatment

Anyway, when I started the series, in the hospital, after having the port-a-cath installed, because they start doing the chemo immediately, the oncologist said that some of his patients are able to take the drugs home. It takes four days and you change them every time the bottle is empty, and I laughed, he was joking, and I should have known. But before I knew what was happening, I was taking the drugs home and changing them myself. I would go by Monday, have my porta bottles with me and then hook them back up for three days, then go back to the hospital on Thursday, put the catheter in, remove these, and have prednisone and cytoxin in. Then I would have my porta cath flushed with heparin and saline and go home. My oncologist told me my hair would fall out in ten days. He was absolutely right. That was in the summer. I never sunburn because I'm dark skinned. I never thought about a baldhead but it'd never been exposed to the sun before. Well, it did burn and it did peel. Actually I went bald three times, because my oncologist thought that I should do pullback, that's what they called my combination chemo, a few more times as a precautionary measure. My daughter in law made me some wonderful turbans, because I looked terrible in a wig. A few months down the line on these drugs, I developed severe stomach pains and ended up having gall bladder surgery. I read later that this is a common occurrence in people on long-term chemo. When my cancer came back, it was still called breast cancer and my oncologist put me on tamoxifen, which I have been on for the five years. So since then I've been on many drugs that made hot flashes seem like a picnic. I guess you should never complain about what you have because the next step could be much worse.

I went to see my oncologist every 3 months. I have a chest x-ray and a bone scan every six months. I get a mammogram once a year and an occasional bone density test. All that stuff would destroy your bones, too. I keep telling him I'm going to die of radiation poisoning before the cancer gets me. But I've been on tamoxifen, I mean physomax for two years, this is to build bone, and I had a recent bone density test and it was good. Thank goodness that's working. I can't say the whole thing is easy to face. My chances of it's coming back again are pretty good, because breast cancer can metastasize to many other interesting places. But I believe in doing everything humanly possible. My oncologist, without whom and the wretched treatment, I certainly would not be here to talk about all this. I have a wonderful, supportive family and friends that are the best ever. I'm really so very lucky that is one of the reasons I enjoy being a Reach for Recovery volunteer, so I can give back a little of what I have been given.

Giving back to the community

I speak to the nurses at our local community college once a year, and I always tell them that they are the channel to the patient, and they should let her know that we, the Reach to Recovery people, are available, and the oncology nurses that I have met with are so amazing. I always ask them if they were chosen for their personalities or their expertise, but they seem to have a lot of both. I have a friend who was diagnosed shortly after I was, originally, and she had a very rare form of breast cancer, at that time six months was the longest they were probably living. Well, her oncologist is noted for being. She was on chemo for five years, once a week, she was on tamoxifen for 15 years, she has never had a recurrence, and if you saw her today, you would never think she had had anything wrong with her. She is just doing wonderfully. We became friends through our mutual loss of a breast, and were introduced by another friend who thought we should know each other. And we travel around the world together, now, so that is one of the high points. One of the things you learn through all this is, no one is given anything. You have to make the best of what you have and it's just, one of the important things, I feel, is exercise. Eating right, of course, but exercise. I do the treadmill for an hour every morning. I've done that for years. I've worn out one treadmill but I do that religiously, even though it doesn't feel too sharp on my hips and legs, but I do think it helps maintain your body and your mind and your spirit to get consistent exercise too.

Living in spite of the cancer

One thing, probably the most important thing you learn, through all these years of up and down treatment and being sick I play down the illness part because that seems so minor in retrospect compared to living. And when I'm with the Reach to Recovery people, I'm always so impressed. People say, isn't that depressing? But it isn't, because 99% of the people you visit just want to get back in the swing of things. And whether they want a breast implant or they don't, or they're going to have further treatment or not, that is the main thing. And you learn to appreciate each day and each person that you need. It gives you a different perspective on life, and you're not as judgmental about things, I believe that you once were, because you realize that life is so fragile, and we're put here for a reason, and each one of us has to find what that reason is, and sometimes it's not too clear and we just sort of muddle along. But living is so important and I don't mean just existing, I mean living, is so important. To enjoy the time that we have on earth and to make that available to the others whose lives we touch.

Key advice

One thing I would impress upon people is if you are diagnosed with breast cancer, I suppose, any cancer, that the most important thing to do is find the best person in the field and go to them and listen to them, and if you don't have rapport with them, find someone else, but do everything medically possible you can for yourself. I am so lucky because my oncologist listens to me when I say I want to take this or that vitamin, he always listens to me like I know what I'm talking about, and I take over $500 worth of prescription medications a month, but I also take handfuls of vitamins, and I think they are just as important, and my oncologist feels that way, too. And we live just a ferry's length away from Victoria, B.C. and recently I've started going over there to fill my prescriptions, because you save so much money when you take that many and you have no prescription insurance coverage, that makes a world of difference, too. But following the doctor's orders and doing what you can, don't make the fact that you become ill, because you are going to become ill, but you have to think of what happens after, that you're here to enjoy life if you've done everything right that you can do.