What has your experience been with late effects?

The first late effect that required medical help, hypothyroidism, became apparent shortly after the end of my cancer treatment, but was not diagnosed for nearly a year and then only after my repeated insistence on a TSH test (Thyroid Stimulating Hormone). Five years post-treatment, I suffered two transischemic attacks (TIAs). I was hospitalized and tests revealed heart damage consistent with the known cardiotoxic effect of the adriamycin family of drugs, of which daunomycin is one. I was diagnosed with dilated cardiomyopathy and congestive heart failure.

For the next two years, my heart function deteriorated, and my prognosis was again poor. But then slowly the medications began to improve my heart function. Presently, I am managing fairly well on medication.

In 2002, I was diagnosed with Lupus. There is great disagreement among the doctors as to whether this is a late effect, and their proclivity is to say it is not. But as I know numerous cancer survivors who have Lupus, I believe it is indeed treatment-related. Since my cancer treatment my blood counts have remained low, usually just under the normal limit, which makes me susceptible to catching pretty much every virus that is out and about in my neck of the woods. I have eleven little granddaughters and a newborn grandson, so I have access to lots of germs. Pneumonia is a yearly event for me. I have also been frustrated by certain cognitive problems, most specifically anything numerical or spatial, which were formerly areas of skill for me.

How were the physicians that treated you?

The medical personnel who treated me were for the most part excellent, especially the nursing staff. Initially, I had some communication problems with my hematologist-oncologist, but we worked those problems out.

What about your post-treatment medical care?

Post-treatment has been another story. It has been a difficult battle with late effects, as the doctors do not wish to acknowledge that late effects even exist and therefore will not acknowledge that any of my subsequent health problems are related to prior treatments.

Have you been to a specialized late effects clinic?

To date, I have not. The clinics I have contacted tell me that they only treat adult survivors of childhood cancers, not adult survivors of adult cancers. This is an area in which I need to be more proactive, as my primary care physician has no experience with long-term cancer survivors, nor can I find a physician anywhere in my area who has experience with the issue of long-term survivors.

What sparked you to become involved in the Cancer Survivors Project?

The Cancer Survivors Project is going to make a difference and I am thrilled to be a part of it. It will provide support and information to survivors, and hopefully raise awareness and educate the medical world about the reality of late effects and the issues facing long-term survivors. As a freelance nonfiction writer and author, I am dedicated to bringing information to people, and the Cancer Survivors Project is such a great opportunity to have a positive impact.

What keeps you going?

Before I was diagnosed with leukemia, I was a very physically active person; biking, hiking, running, racquetball, and the general physical exercise involved in raising four children and working outside the home. I miss that level of physical activity and accomplishment. Post-treatment, I have tried to regain at least a portion of that former level of energy and activity. Although I can no longer run, nor play racquetball, I continue to bike and hike and cross-country ski, just not at my former levels of stamina and exertion. In 1998, as part of the Leukemia and Lymphoma Society's Team in Training fundraising program, I trained to ride a century (a 100-mile bike ride done in one day). I tried very hard, but I am no Lance Armstrong. Despite months of professional training, I was not able to complete the ride, although proud to do in excess of 50 miles. It was both a disappointment and a victory.

How's your work life?

Before diagnosis, I had worked as an editorial assistant at a magazine, and in career counseling at a private college. I did not return to work following treatment, as my prognosis was poor and I wished to enjoy the time I had left with my family and friends. I also spent a lot of time writing, something I had always done for pleasure. Several articles I wrote were published. I never expected to beat the odds with my leukemia. A dear friend of mine was also beating the odds, battling both breast and ovarian cancer. We bemoaned the ignorance with which we had begun our battles, and after much encouragement, we combined our knowledge and my writing experience and wrote a guidebook for women with cancer. The book was published in 1998. Since then I have continued to write as a freelancer. I don't "earn a living" at it, but I write about things that are important. I am very active in volunteer activities, but simply do not have the stamina for a full-time job.

Have family and friends been supportive or bewildered?

My husband has been a tower of strength throughout all the changes cancer has brought to our lives. Leukemia didn't happen to just me. It happened to us. I was challenged physically, but both of us were challenged emotionally, mentally, and financially. My husband continues to be my partner in the truest sense throughout all the subsequent health problems and life issues we face. My children were in their early 20's when I was diagnosed, and they handled it with varying degrees of ability and success. They were very supportive of me, but not always supportive of each other. We learned a lot about ourselves as a family and have grown greatly from the experience.

The reaction of friends is always a bewildering facet of the cancer experience. Some of my friends were incredibly supportive; others disappeared into the woodwork, never to be heard from again. Even parents and siblings presented surprises, some close by, others absent. And many people that I hadn't known at all, or barely knew, became my friends. Loss and gain. So little and so much.