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Survivor Interview – Barbara H.

Barbara is a breast cancer survivor. She talks about her clinical trial, her role in changing public policy, and finding emotional support.

A middle-aged woman wearing a yellow sweater is interviewed against a white background

I became a survivor in March 2001, when I was diagnosed with breast cancer for invasive ductal carcinoma.

As much as I felt in shock and in agony and felt very mortal, I also began to feel like a survivor right at that early stage. I went into a support group within three or four days of diagnosis, before surgery. It was really important for me to get into the support system as quickly as possible. There was so much I needed to learn, both from professionals and from my peer group. That, too, made me feel like a survivor to go into a group that meets weekly and everyone is coping in some way or other with their disease.

Once I had chosen my place of treatment and my team, I asked if I could have a guided tour through the oncology ward. I wanted to see where they were gonna put needles into me and what people looked like in there. Were they suffering? No, that was not the case. I tried to do whatever research I could, easing the shock of what I was going into.

An analysis of the tumor showed it was HER-2/neu positive. That means that there’s a certain gene or oncogene that helps to overproduce cancerous cells. That made me eligible for a clinical trial that would test the drug Herceptin, which has already been in use with a lot of other cancer patients but had not been yet FDA-approved for early-stage breast cancer patients.

I went through about six months of different forms of chemo. It was horrendous. That’s where the support group comes in, because I learned in advance what I was getting into. After that, it was about four months of Herceptin around the same time that I was doing radiation.

A lot of these meds are very toxic, and we’re told up front they can cause heart damage. I went for it. After about four months, I had to go off the trial from heart damage. I was so disappointed. I felt that the more and the longer I had that drug, the more successful tumor prevention would be. I went to the doctor saying, “I feel like I’ve been kicked out of paradise.” But somebody said a very good thing to me: “We say to you to take a drug for twelve months, but we don’t know if that is the amount of time you need. Maybe four months is all you needed.” I’m just grateful that I had at least some.

They don’t just throw you into trial for the sake of it. They earmark a trial to a patient’s individual case and characteristics. I had complete confidence that I could potentially be helped by the trial that was proposed for me. I think that there can be some misconceptions about trials. For example, no medical institution or government body wants anybody to be harmed by a trial. There’s a great deal of protection of the patient. It’s up to us to choose to be in the trial. It’s up to us to decide to leave the trial.

For me to go into a clinical trial meant that I’m standing on the shoulders of people who went before me. I wanted to be someone that other people could stand on the shoulders of. I did speak about it quite extensively with different physicians, and I also talked about it with members of my family, some of whom are physicians. Oddly enough, my family members said, “Stick with the standard treatment. How do you know that this will help you?” I have somewhat of an adventuresome spirit, but also the activist in me said, “If I don’t do this, I won’t know.” I would do it again in a heartbeat. Pardon the pun.

Towards the end of treatment, I already started to think about, “How can I give back?” I felt that I was in a very excellent community of care. I wanted to give back to that, but it also included, “How can I learn? What could I educate myself about?”

One of the things that I went toward was the National Breast Cancer Coalition. They lobby for a lot of changes in health law. They are also very much geared toward providing people motivation to educate the public about breast cancer as a disease, and also help lobby for legislation. In addition to their annual conferences, they have a week-long training called Project Lead, given four times a year. It trains people who have had breast cancer to be consumer advocates. It’s really designed to help you in speaking with legislators or someone who’s in a position to promote change.

This is a disease that, at its worst, can ravage you. At your moment of worst fears, you think it’s taking over your life. Positive thought, positive action, advocacy—these are different ways that not only am I giving back, but I also have those little moments of control over my disease.

As soon as I knew that I was going to be losing my hair, I created a ritual. I invited about 50 people to my house. I selected a whole bunch of motivational sayings and I put them in a bowl. We all did a healing circle first. Then people picked a saying out of the bowl and, as they read it, they’d pick up a clump of my hair and cut it. By the end, everybody had cut off my hair. Then we had a healing circle again, and we sang, ate and drank. There was a big thunderstorm that day, so everybody felt that somehow, the heavens were involved in this, too. I had, for a couple of minutes, gotten control over this disease process and had fun with it.

Just like I decided to go for it with the clinical trial, so, too, did I decide to go for it with complementary therapy. I didn’t want to feel that it was just medication that was governing me. I set up appointments for acupuncture when supposedly my blood counts would be low. I was never nauseous. Never. I did check with my physicians, because I think they have to be able to say, “This person can have acupuncture.”

I was afraid of getting lymphedema, partly because I lift things a lot. I got my arms and legs measured so that any time I suspected swelling, I would go back and get another measurement. The other thing I would recommend is to get a prescription for a compression sleeve. That’s just another way that you can do a little preventive self-care.

I live alone, and I’m generally pleased with my independence. I have a lot of friends, and a large extended family, but when a serious disease strikes, one suddenly realizes, “Oh my gosh. I’m alone. What if?” I had to take a little dose of humility and ask for help and support. As soon as I got the diagnosis, I told the neighbors closest to me. I said, “I don’t want to tell everybody in the neighborhood. I don’t want people to be anxious about me, nor do I want to spend all my time talking about this. I need to tell you all who live around me, because there may be some time in the middle of the night that I need something. I need to know who I can count on.” It was just an example of having to admit this vulnerability that I didn’t have before. My faith community was wonderfully supportive. People cooked meals or took me to appointments. I’ve done that now for other people.

I also elected to go into psychotherapy for about six months. I considered myself fairly self-aware, but I still have to sit with myself and process this. It’s really very frightening. You’re facing a disease that is unpredictable. You begin to think, “Do I even need to think about a retirement plan?” There were periods of great sadness. In a therapeutic situation, I could just talk or cry and realize things wouldn’t be the same. For a while, I felt that my life was over, my youth was over, and I felt diminished and weakened. But the light at the end of the tunnel is that you get an increased new awareness. You realize how precious life is. You realize which relationships really mean something to you.

Survivorship for me means a couple of things. I have faced something extraordinarily threatening and have emerged from it, have lived in spite of it. It’s not only knowing that I was threatened, but a sense of relief and gratitude that I am still alive to enjoy the sweetest things that life has to offer: the beauty of nature, conversations with people dear to me. It can be trying to make a difference in my community. Survivorship also means taking some positive action, so that one keeps that survivorship going.

Before cancer, I was somewhat oblivious, because I just didn’t realize things that are at stake. I think that I have the capacity now to have a better life. Everything I do now really has meaning for me. I don’t want to waste another minute.

My name is Barbara Holtz, and I am a three and a half-year cancer survivor.

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