KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I am going to have a hard time with this diary because it will not be about my wife nor about breast cancer but about my feeling of helplessness as she goes forward with a double mastectomy on October 12th. Ironically that is our 30th wedding anniversary. I will have trouble because I am having trouble coming in touch with my own feelings. Cancer has been something of "interest" to me since a day I'll never forget in 1961. I was a first year graduate student working on my Ph D at the University of Chicago. I was being mentored by K. L. Chow at the time and my project involved neurologically isolating a slab of the cortex of a cat's brain to see if it responded to photic driving via the intact blood circulation. So on that day I was up in an animal operating room in Abbot Hall doing brain surgery. The door flew open and some big shot cancer researcher whose name I forget came in with an entourage and some experimental animals and moved me out stating:
Today you are seeing cancer history being Made
I have no idea what that history is but I have had a a lot of experience with cancer research since then. That is part of my unease. All these years of research and here we are. Read on below and I'll spell it out.
I'm going to explain what I do know about cancer, little as it is, so we can put my situation into perspective. One reason I offered to write this is that most husbands, lovers, friends, whatever of a cancer patient are not usually research scientists. They are folk who have had cancer thrust into their lives and are upset, concerned, and probably feeling just as helpless as I do.
Cancer is a strange disease. It is one's own body running amok. From that day in 1961 I saw theory after theory for the "cause" of cancer. Free radicals, viruses, etc. each theory was to provide clues for a "cure". Genetics has become a big factor but it only gives ideas about probability not mechanism of onset. While a grad student I worked with Dan Agin who was a Post doc in our lab at that time. He now is a well known author and blogger on the Huffington Post . His book:More Than Genes: What Science Can Tell Us About Toxic Chemicals, Development, and the Risk to Our Children raises interesting questions about how the poison we are putting into our food and the environment might play a role as early as conception. So far as I know, the only cure for cancer is to to get rid of it by surgery, radiation, chemotherapy or some combination of those. There are lots of dietary theories too. Anti-oxidants are among the most popular now. The association of free radicals with cancer seems to give this idea some merit.
I worked with the head of the Massey cancer center at our Medical college for some years. The project was about a chemotherapeutic agent, methotrexate, that blocked a key step in folate metabolism thereby interfering with the production of DNA and RNA. Chemotherapy is a race to kill more cancer cells than normal ones. The cells most susceptible are those in tissues that have high turn over rates like the gut wall. Since cancer is a fast growth of tissue it too is susceptible. I did the computer modeling on this project and we improved the kill rate of the cancer and the survival rate of normal tissue. I still feel good about that work. I also still feel very unsure of chemotherapy.
My wife had a serious Staph infection in her spine last year about this time. It lasted three months much of that time we spent in the hospital getting antibiotic every four hours around the clock. I lived in the hospital with her when I was not taking care of her at home. As a result she missed her regular mammogram and had it in December. It showed stage zero cancer and she had a lumpectomy in January followed by a new form of radiation treatment that involves a balloon being placed in the cavity from the tissue removal and strong radiation placed in the balloon four times over a two day period. This saves the breast from being exposed to lots of radiation all over while concentrating he radiation on the tissue surrounding the now removed cancer.
Six months later the follow up mammogram showed a new spot in the same breast in a different location. The biopsy again showed stage zero cancer. Stage zero is the first sign of detectable cancer that is confined to a place where it has not yet begun to infiltrate the surrounding tissue. It is often called "in situ" because it is in place still.
Radiation is supposed to do what chemotherapy does but it is easier to direct to a specific place rather than to flood the body with a chemical. It also is a possible cause of cancer. this gets messy doesn't it?
For me, to make matters worse, I had another computer modeling research project involving human prostate cancer. Our model was an elaborate system of cells that had two kinds o secretions and two kind of receptors. One was a growth stimulator and the other a growth inhibitor. The receptors kept a tally and when the score was right the cell either died or divided. Very simple compared to real life. When we ran this millions of times we got a statistical distribution of the possible results after an intervention that took out all the cancer cells in our model. The intervention could represent any of the ways we do this, surgery, radiation, or chemo. The results were both ridiculous and scary! They matched the actual clinical distributions of what happened in real patients after the various interventions. A certain percentage were cured, another percentage had metastasis (cancer spreading) and the rest stayed basically as they were before the intervention.
That was my last attempt to involve myself in the cancer problem. It was also an incentive to learn more about complex systems. We now know that real complex systems contain closed loops of causality and can not be modeled on the computer.
My last encounter with the world of cancer research was a few years back when at 73 I was called by the NIH National Cancer Institute to sit on a grant review panel for grants involving the use of physics in the study of cancer. They were promoting exactly what we had been doing so many years back as if it were a new idea! I went to the panel but I doubt I'll ever be invited back. Old wine in new bottles is a phrase they did not want to hear. These were huge grants involving major Univeristies and the creation of expensive research centers.
My stories are a necessary part of why I am in the mental state I am now. My wife made her own choice. She is going to have both breasts removed. the mammography and biopsies wore her down. The reappearance of cancer in six months was discouraging. I have tried to be supportive. She knows my attitude toward medicine in general and cancer research in particular. Thirty years ago, just after we met, I took her to the annual "big brother and big sister" medical school picnic where the freshman medical class got tips from the upper class medical students at the beginning of their first year. She overheard them discussing how to pass the courses with minimal work and study and they passed out old tests and other short cuts. She was horrified! These were going to be doctors? Yes that's what school is all about until they actually get to the moment of truth and realize these are human lives they are working with. I taught them since I was assigned the neurophysiology lab course as a grad student in 1962.
So in a few weeks my wife will loose her breasts. She is doing what she thinks best to prevent dying of a horrible disease. She has lots of cancer in her family. My dad died from prostate cancer and my favorite aunt died of cancer when I was a kid. My first wife's sister died of Hodgkin's disease at a relatively young age. So it is not new to either of us as people who lost those close to us. I want to be a comfort and help and will do the best I can. This diary gives you insight as to what she is up against having me as her helper. I hope I can just be the human being that the situation calls for. It is going to be hard.