June 8th marked a year since my diagnosis with leukemia. I have experienced a lot in the past year, physically, mentally and spiritually. My biggest surprise has been a more personal understanding of the permanent side effects of treatment. Sure, I had heard of chemobrain and believed it to be real, but now I know what having chemobrain feels like and how it affects my daily life. Numb toes and neuropathy may be a small price to pay for being here, alive and kicking, but it is a constant reminder of what I have been through.
I have given a lot of thought to the collateral damage that results from cancer treatment. The fact is, it is rarely talked about and only starting to be acknowledged by the medical profession. I think part of the problem is that doctors look at the survivors and compare them to the people who died. Their reaction is, “Why are you complaining? You are lucky to be alive!” Meanwhile, survivors compare themselves to how they were before getting cancer and notice all the damage that has been done by the treatment. Yes, we are lucky to be alive but wouldn’t it have been better not to get cancer in the first place? Of course! Yet there doesn’t seem to be much appetite in the research community for moving beyond the cure to focusing on prevention or finding the cause.
One of our goals at the Dr. Susan Love Research Foundation over the next year is to document the collateral damage that current therapies cause and bring the true price of the cure to light. Until we testify to the side effects and complications we experience, there will be little incentive to look for prevention and the cause of the disease.
All you survivors—you who have experienced the physical and emotional toll of cancer treatments–please join the Health of Women (HOW) Study where we will be collecting data about your health, treatment and later this year, side effects. And those of you who have not had breast cancer or any cancer, please join as well so that we can figure out what might be the trigger that causes this disease. We need all of you to share your histories, help quantify the side effects of treatment, and to add your voices to the call for more emphasis on research into prevention and cause.
As many of you have heard me say, if we could figure out the cause of cancer of the cervix and develop a vaccine within my professional lifetime, we can do the same for cancer of the breast. I am sure we all are grateful for the treatments that we have received, but I am also sure that we all would have rather not had cancer in the first place. We can be the generation that ends breast cancer if we all join the effort to make it happen!