Survivor Interview – Barbara R.

I became a cancer survivor when I was diagnosed on October 20, 2003.

I had a PET scan, CAT scan, a bronchoscopy with biopsy, and two needle biopsies. It was on the second needle biopsy that sufficient tissue was found to diagnose adenocarcinoma. I have two tumors in my right lower lobe. One of the scans had shown that the lymph node in my mediastinum area between the lungs lit up, so that it meant that it’d probably spread to that area. The surgeon did a mediastinoscopy and checked the lymph nodes in the mediastinum, and indeed, the cancer had spread to that area, which meant that I was not a candidate for surgery. I received chemotherapy and radiation therapy simultaneously.

On my post treatment scans, not only had my tumors not decreased, but there was another tumor there. So I was not responsive to the chemotherapy or the radiation therapy. I was started on Iressa, which is specific for lung cancer. It keeps the tumor from growing. When they took the scan after my treatment, it showed metastatic changes in my lumbar vertebra, so I have metastasis to the bones. I’m receiving another medication called Zometa that should control the bone metastasis. I still had a fair amount of pain in my lower back from the bony metastasis. Again, I went into the radiation therapy department and received seven treatments to my spine, and that improved the pain tremendously. It’s not completely gone. I still wear a pain patch that has helped a lot, and I have other pain medications that I take when I have breakthrough pain. But I’m able to be active, not as active as I’d like, but to certainly do the activities of living and being out with friends.

I’m receiving palliative care now. As soon as I knew that I had metastasis to the spine and that the chemo had not really affected the tumor, I knew that palliative care was going to be my next step and that, eventually, this cancer will quite likely kill me, unless I step off a curb and get hit by a bus, which is a risk that all of us share. So that’s been a topic for lots of soul searching and lots of contemplation. When she told me those results, I knew that palliative care or nothing would be my option. So I was very pleased that Iressa was available. It’s a very new drug. I’m hopeful that it will be effective in extending my life. And the same with the Zometa and keeping me relatively pain free and to constrain the bone effects.

I don’t know a lot about complementary therapies. I gave some contemplation to some of the dietary therapies that people talk about and decided that the pleasurable aspects of food are too important to me. When it became hard to eat, I knew if anything was going down my throat, it was going to be something that I enjoyed. So I eliminated that branch. I was referred to an acupuncturist, who is very interested in combining Chinese medicine with Western medicine and augmenting the effects of both of those. I have been getting acupuncture since I began with the purpose of improving my energy, enhancing the immune system and helping deal with pain. I think that’s been effective. I’ve had no infections. I’ve really had very little problem with being immunosuppressed. In fact, I haven’t had a cold since everything started. So I think that that’s been helpful. I also began seeing a massage therapist, and my weekly massage has become the high point of the week. It makes me grateful to be in my body. I’ve been pretty angry with my body at times, so that’s something that just makes me feel very good to be me, and I treasure that.

When you first get the news, it’s like you’ve been hit in the stomach and you’re so full of fear and apprehension and, “What do I do? What do I do? What do I do?” If you give it a couple of days and let it settle in, then you can begin to absorb the information and deal with it. Hang on during that awful, awful, overwhelmed period. Don’t go to the doctor without taking someone with you that can write down the stuff that gets said and can make sure that all of your questions get asked, because once the conversation starts going in a direction you didn’t anticipate, it’s so hard to keep your head in the game. It’s so good to have someone there that can help remember later and can help remember the questions that you wanted to ask.

I find that I get answers to questions that I didn’t know I had in the cancer support group. People will talk about their experience, and I realize that I’m going through the same thing. I just hadn’t defined it yet. One of the other women in the support group said, “You go through every day and people say, ’How are you?’ and it’s meant as a greeting. It’s not a question. So you go through the day saying, ’Fine,’ when you’re really not fine.” When you go to the cancer support group, you can just pull out all the cancer stuff and put it on the table along with everybody else’s and you don’t have to be fine for those hours. They’re nice people, and I enjoy their company.

I’ve been seeing a therapist. I had been seeing her before I was diagnosed. That’s been a really good process. It has added structure to my efforts. I’ve read a lot. Stephen Levine’s writings have been very, very helpful to me. I have come to a point with my personal philosophy that death is a part of life, and it’s all a cycle. I can make what I please of it. I choose to make the most of my life that I can, which doesn’t mean I haven’t spent a lot of nights in tears and afraid of what that means. I’ve certainly come closer to coming to terms with it.

There are people who say, “What do you want to do most of all? Where do you want to go?” When I really think about it, I’m doing what I want to do. I’m in my home. I have friends that are great fun and we go to the theater and do things that are pleasant. Life is good right here. I don’t have any need to take a cruise around the world or climb Mt. Whatever. I’m just happy being here now.

It’s hard to know what expenses are going to be. You go through life planning on living till you’re 100 and putting away investments and that sort of thing. Now, I have no idea how to project into my future. I’m dipping into savings now, and that’s not a concern yet. It’s not knowing how to budget, because there’s no end point, and I don’t know what the future expenses will be. I’m very grateful that I just happened to get a long-term-care insurance policy a few months before I was diagnosed, so that’s very good. That was a lucky stroke.

My belongings are in a trust, and I’ve snagged my brother, who will be my successor trustee and made him look at where the papers are and so forth. I have a durable power of attorney for healthcare. A friend I trust very much will be able to make decisions when I’m not able to. I haven’t come to the point of actually planning my memorial services, but I anticipate doing that. I’d really like to have everything decided, so that I can decide everything for the people that’ll have to carry out those wishes. I’d rather do it than leave it for them to struggle with.

Survivor, to me, means you’re still alive. Certainly, Lance Armstrong is an inspiration to everyone without question, and living strong is a terrific goal to do that. It says what needs to be said — that living strong is better than being sick. I live strong by trying to maintain a positive attitude, by staying engaged with my friends, engaged in reading things. I’m a voracious reader, but I have not read self-help books. I now find them very helpful. So I live strong by looking for inspiration in those sorts of things.

My name is Barbara Ramsey, and I’m a one-year lung cancer survivor.