Jill's Story: breast cancer

Listen With ( 10 minutes 38 seconds )

Jill: Surviving breast cancer

Hi, my name is Jill, and I was 38 years old when I was diagnosed with breast cancer. I'm 41 now, I'm married and I have two children, ages 7 and 10, and I live in the San Francisco Bay area. In February of 1998. Boy, what that a bad month. I had just been laid off my job, and I thought that was the shock of my life at the time. And then I went for my yearly pap smear and my gynecologist felt a mass in my breast and sent me off to see a surgeon who then sent me for a biopsy. Having cancer was absolutely the furthest thought from my mind. When my gynecologist called the next day and told me that my biopsy showed that I had cancer, I was shocked. I couldn't believe it. That was really the shock of my life. I was speechless. And then of course I just fell apart. Luckily at the time my kids weren't here, nobody was at home, and I had to call my husband at work, who immediately came home and we both fell apart. The next few days were just a blur. I couldn't sleep. I'd spend from four to six a.m. every morning sobbing alone. We had to call our parents and our siblings, but telling friends was really difficult. What do you do? You call your friends and say, Hi! Just wanted to let you know, I have cancer. So what I ended up doing was just calling one or two key people and letting them tell other people. I felt like I needed people to know what was going on in my life. It was pretty traumatic.

Taking control of the situation

The surgeon I met suggested that I start reading, which I did, immediately, it was important for me to feel like I had control over this situation and then I was crazy about reading everything I could possibly get my hands into. The internet was pretty overwhelming for me and I stayed away from that, it was just too much information, and when I got tired of reading, or overwhelmed by too much reading, I'd have my husband read and have him tell me what he had read about. I spent the next three weeks in doctor offices. It was also important for me to feel that I was choosing my team of doctors. I met with two of everybody, two oncologists, two radiation oncologists, two plastic surgeons. I spent hours with them, and they were wonderful about giving me the time to explain everything that was going on, and what my choices were at that point. I had a really good friend of mine, who's a nurse, go with me. It's really important to take somebody with you, whether it's a significant other or a friend, so that you can have someone else there getting the details that you missed. Because it's very overwhelming. But I guess I had to be laid off because I had to do this full time.

I ended up having a mastectomy, and I had a tissue expander put in at the time so I could have an implant later. I was trying to consolidate some of my surgeries. I stayed one night in the hospital, my parents flew in to be with me, I did go home with drains, which is pretty normal, as my surgeon says, drains are your friends. The first one came out a couple of days, the second one, no one told me that you needed to sit still at home and not be too active, because that increases the drainage, which means that you keep your drains in longer. The second drain I had in for two weeks, no shower. And let me tell you, that was the best shower of my life after my last drain was taken out.

Then I found out that I had eight positive lymph nodes, quite another shock. It was devastating. I knew at that point I'd be in for a lot of treatment. I had four rounds of chemo, I had a stem cell rescue, which you may know as a bone marrow transplant, that's very high dose chemo and being in hospital for a month, and then six weeks of radiation after that. The bone marrow transplant first they take your stem cells, which is done through a pheresis, a couple of weeks before you go into the hospital, then the first four days of the hospitalization, you're on chemo 24 hours a day. They kill off all your bone marrow, and then about the fifth or sixth day, you start getting hit with all the side effects of all that chemo. And then they give you back your stem cells, which are supposed to grow up into nice healthy red and white blood cells in your body. It's unbelievable, the process that you go through, and it was quite an experience. I still can't believe that I've gone through all that treatment, which took about eight months.

Developing a connection

I did go to a support group, which I started right after I had my mastectomy, through the Wellness Community. It was a great experience. I'm actually a licensed clinical social worker by background, and it was funny for me to be on the other side, the receiving end of the group instead of leading the group. But you are thrown in with an odd assortment of people who might not normally be your friends, but after you go two or three times, you start to feel quite a connection with other people, which I think is really important. The best part is people can give you pieces of advice that they have learned, because everyone's in a different place in treatment. That's where you get the best information about medication they use, or if they've tried this or that, which made them feel better, so I highly recommend support groups.

My children at the time were four and seven and I would sit them down at each part of the process and explain to them what was going to happen to me next. Children don't have any understanding of cancer, so it's not a word that you tell them that they think you're gonna die. They don't know. So you just explain to them what's happening and make it sound okay for them. My seven year old son doesn't like any medical information, so I had to be very careful the words that I used to tell him what was happening to me. My four year old daughter asked a lot of questions. I explained about this terrible medicine that I had to take, and she asked, why would they give me something that made me sick. And she's a pretty bright kid and I said, that's a very smart thing to ask. And it made me realize I needed to talk about chemo and think about chemo, in a much more positive way. And that's the way I turned it around the way I explained chemo to my kids. It was really hard on my children, having people stay here. And being told what to do by others. My family is far away and everyone flew in at different times.

I was really glad that I didn't feel too bad from the chemo. My stem cell rescue as I said was truly amazing process to go through. After I was out of the hospital, which was almost a month, I had to stay home for another month so that I wouldn't be around people who would get me sick, since my blood counts were still so low. I did get a wig before I lost my hair, which I recommend doing, so in case you want a wig that looks similar to your own, that the person can see what you look like and find something similar. But I actually never wore mine. I was really much more comfortable with hats and scarves. My son thought it was very cool that I was bald, and proudly told his friends about that. My daughter thought my head felt like a baby's head.

Social support

After, the next part was radiation. And of course, radiation is much easier to go through. You don't get sick. You may feel tired from it. But I was still tired from all the other treatment that I had been through. I'm normally a very busy and very active person, so it was hard for me to be at home, and each day I was constantly looking for something to do, just to keep me busy. I had wonderful support from friends and family. My friends and member of my synagogue and members of my synagogue brought us dinners three nights a week for about nine months. I had many offers from people to drive me places, take the kids, run errands for me, anything, anything I needed. It was unbelievable. I was so lucky to have all those people there for me. It did take quite some time for me to get my energy back, especially since after all my treatment I had many surgeries for reconstruction.

Last year I had a permanent implant put in and then a few months later I got a terrible infection and had to have it taken out. I wore a prosthesis for a while. Then I ended up with a non-healing wound on my chest and several months later I had a trans flap, which is a surgery where they take a muscle from your stomach and a flap from your stomach and they make a breast out of it. The good part is you get a full tummy tuck, which at that point, I really deserved. You have to get something positive out of this. It was the biggest surgery that I had had up to that point. It was 8 hours of surgery, I was in the hospital for a week, and of course no driving for six weeks. It was a very long recovery. It was a lot of abdominal surgery and everything hurt for a long time.

Sharing the story

Over the last year and a half, I've been volunteering at American Cancer Society, and I do Reach to Recovery. After I was first diagnosed, I called American Cancer Society to talk to somebody who was about my age. It took them a few days to actually find someone who was my age, and she had had surgery about fifteen years ago. She was very young. So I didn't feel like I had someone who was up to date with what was going on these days with surgery and reconstruction. So I decided right then that when I got through this I would join Reach to Recovery. I have such a wealth of information that I'm glad that I can share it with other women who need it, and now I'm looking for a full time job, finally. My priorities certainly have changed. I was able to spend a lot of time with my kids, helping them with some problems that they were having at school, as well as working on my marriage to make it better. Now when I get upset over something, I have a new motto: "Well, it's not cancer". That's it.