FEAR AND CONFUSION: Ever since I first found out that Barbara had breast cancer, the thought of her dying plagued me almost daily. I never told her how I felt about this because I tried to be her coach and source of strength. There were many nights, especially when she was in the hospital with the infections, that I cried myself to sleep. I just kept thinking that it was so unfair for her to have cancer and suffer all the humiliation and sickness that came with the chemotherapy treatments. I never really got over the fear of losing her. I was so afraid of what would happen to me. How could I go on with my life without her? How would I cope with never seeing her or talking with her again? I thought a lot about death during this period. I firmly believed in the afterlife and eternal salvation. I knew that Barbara was a good Christian and that her place in heaven would be a certainty. But I wanted her here on earth with me for the rest of my life. I wanted to see her grow old and comfort me. I couldn’t stand the thought of her dying before me. After all, I was the one who served in the Army, a very dangerous profession that, at any minute, could have thrust me in harm’s way to face the strong possibility of death.
I woke up every day with gut-wrenching anxiety attacks. I didn’t sleep well and would often awake in the middle of the night in fear and confusion. I felt so helpless and so sorry for my poor wife who faced each new problem with a smile and a positive attitude. I knew all along that she was afraid, but she did a good job of hiding it. I guess that this attitude helped give me some strength in my lonely world full of confusion and pain.
SOME THINGS I DID AND SOME THINGS I COULD HAVE DONE: Barbara received her treatment for breast cancer at the University of Kansas Cancer Center, a research and teaching institution. This had a lot of benefits for us in that they seemed to have the latest information available. Early on the staff provided documents, phone numbers, and addresses where additional information could be obtained. If in doubt about where to go to get information, the National Cancer Institute located in Bethesda, Maryland—1-800-4-CANCER, www.cancer.gov—is always a good source. They publish hundreds of pamphlets on every type of cancer. In addition to publishing highly educational information about the many forms of the disease, they also publish materials that help family members deal with cancer. The materials are all published in both English and Spanish.
I also found an organization called Y-ME National Breast Cancer Organization, a national organization for breast cancer information and support located in Homewood, Illinois, 1-800-221-2141, www.y-me.org. This organization publishes a bimonthly newsletter with some very useful information.
In all of my research and desire to become knowledgeable about the treatment of breast cancer, I never forgot to look out for myself. I was in excellent physical condition; however, anxiety and lack of sleep eventually took their toll. In hindsight, I should have befriended someone to look after my health, too. They could have served as a sounding board and provided feedback about my physical and emotional condition. Also, I should have sought out a cancer support group, even if Barbara did not want to attend. By going to regular meetings I might have found a place to release some of my emotions in addition to finding another venue from which to gather facts.
QUEST FOR KNOWLEDGE: One of the hardest things that I found out early on was learning about breast cancer and then trying to educate my family and friends. To educate myself I spent some time in the public library doing some reading and research. I studied all I could get my hands on that explained the effects of cancer. I studied anatomy books and became very knowledgeable about the function of most of the major organs of the body. I also became familiar with a lot of the medical jargon and definitions of drugs, what they were supposed to do if taken properly, and all of the side effects that could occur. I called the toll-free numbers to the American Institute for Cancer Research, 1-800-843-8114, the National Cancer Institute, 1-800-422-6237 and any local organizations I could find for information. I read and studied all the pamphlets from the Cancer Center in Kansas City and from the Army hospital in Fort Leavenworth. In short, I tried to become as knowledgeable as I could on the thing that was trying to take away my wife. I suppose it was not too different from the training that I received in the military. If you are going to destroy an enemy, then the more you know about him the better your chances become for success.
In summary, here is what I learned from all my studies: Every human being has DNA that makes up his or her genetic code. The most important task for our DNA is to control cell division. Within our DNA there are oncogenes and tumor-suppresser genes, which normally operate together to control cell growth. However if there are defects in these genes caused either by radiation, viruses, environmental poisons, or bad genes inherited from parents, then these cells can grow into tumors. Theses tumors can split again and again, creating even more malignant tumors. These malignant cells develop their own capillaries that provide them with nutrients. The malignant tumors ward off the body’s natural defense system (white blood cells). Once secured, the cancer cells use the body’s circulatory and lymphatic systems to travel to other parts of the body and create new malignant tumors. This is known as metastasizing. At the time that I studied this deadly disease, there were only three ways to fight against cancer: surgery, radiation, and chemotherapy. I also leaned that the breast contains a lot of fatty tissue and that cancer cells like to seek out fatty cells. Much to my disappointment, I also found out that inflammatory carcinoma of the breast was the most lethal of all the varieties of breast cancer.
SHOCK AND FOCUS: During the initial stages of Barbara’s treatment in late 1992, I was in shock. It all seemed so unreal, like a bad nightmare. But it was no dream. It was real and events were moving along quickly. It was during this period that I also felt a change come over me. I had always been sort of a materialistic individual. But my attitude toward those things began to change. I had to keep focus and concentrate on managing the treatment of my wife. The most important thing in the world was Barbara, her well being and receiving the best possible treatment to enhance the probability of a successful recovery. Material objects, money, and work all took a backseat. Nothing mattered except Barbara and our joint fight against cancer. My life had been altered so drastically, that I often found that I did things out of the ordinary that I never would have done in the past.
GETTING ORGANIZED: After our first visit to the Cancer Center, I quickly realized that I needed a planning calendar where I could keep track of Barbara’s treatment schedule and schedule the type and amount of drugs that she had to take. I supplemented this with the maintenance of a daily and, in some cases hourly, journal. I recorded every little detail to include attitudes, emotions, type, and amount of drugs, start and stop time of Barbara’s period, eating habits, problems of all sorts like lack of bowel movement or aches and pains. I wrote down everything that I observed, and then put it into my computer for a permanent record. This detailing of events paid off big in a couple of tight situations. I always accompanied Barbara to the hospital for her doctor appointments and chemotherapy treatments. When she was admitted to the ER with the infection problems I was able to describe in full detail the type and amount of drugs that she was currently receiving. This helped the doctors and it kept me informed as to exactly what was going on, making me feel like I still had some sort of control. I also added a closing paragraph each day to my journal that described how I felt. I simply called it “emotions.” In this paragraph I jotted down how things had gone for me throughout the day. I found this very useful because it helped me vent some of the frustration that I kept built up inside.
MY THERAPY: In the initial months of December 1992 and January 1993, I really didn’t do much except keep the house cleaned, cook on occasion, go to work and look after Barbara’s needs. She told me at one point that I was hovering too close and that I needed to back off and give her some space. She spent the majority of both day and night in bed. So I felt an obligation to be ready at her calling to get Kleenex or water or juice or whatever she needed. In essence, I had turned into her day-and-night nurse, cook, and counselor. But she was right; she was sick but not helpless. So I took her advice and started to work in my workshop building her a new cherry wood kitchen table. Woodworking was a new hobby and I was still in the learning stages. I found, however, that concentrating on the task of building something took my mind off things even though it was only for a short period.
BITTERNESS AND PAIN: No matter how hard I tried, I couldn’t get rid of the thought that this horrible disease just might claim her life. Here we were, forty-four years of age, close to retirement from the Army, and our sons were both grown and just about out of college. This was the prime of our lives when we should be setting goals and objectives for the retirement years. We should have been dreaming about vacations without kids, and discussing how we would treat our yet unborn grandchildren. Instead, we went from doctor to doctor, hospital to hospital and I watched them pump lots of drugs into my sweetheart’s body trying to destroy a killer disease. I was becoming a bitter person. I felt that life was unfair. I hated cancer and I hated the chemotherapy that was destroying Barbara’s body. Why couldn’t we find the cause of breast cancer? Then she wouldn’t have to suffer.
FACING REALITY: On the way to the hospital one morning, I had a huge lump in my throat and tears in my eyes. I was tired and stressed. I came to the realization that no matter how much I prayed and monitored Barbara’s treatment, if she was going to die from breast cancer there was nothing that I could do to stop it. That really didn’t take away the anxiety of knowing that I might lose my best friend, but it did help me come to grips with human vulnerability and the lack of “magic modern medicine.”
DEALING WITH MY SPOUSE: It would be too simple to say that Barbara and I had a perfect marriage, but it is probably the closest to the truth as I can get. We literally never fought in twenty-five years of marriage. We had disagreements, but we worked them out quickly. We complemented each other tremendously. I always tried to treat her like the beauty queen that she was. Even after twenty-five years of marriage, I still opened the door for her, held her coat while she put it on and generally tried to be a proper gentleman. Our sex life had grown and enriched over the years. Neither of us ever cheated on the other and we were able to maintain a bond of love and trust that got us through some pretty hard times in our life together. We did change our sexual frequencies during the treatment for cancer. I won’t go into any details except that it was something that we discussed early, right after the effects of the first chemotherapy treatment were known. Barbara was tired most of the time. She exhibited little energy and had no desire for sexual activities. For me this was OK. I told her that her health was more important.
DEALING WITH FAMILY: Telling my sons that their mother had a serious form of cancer was no easy task. Tom, the older, was sympathetic and understanding and basically felt that his mother was a strong woman and that she had the willpower and strength to win her battle with breast cancer. Jason, our younger, was very close to his mother. Like his brother, he was sympathetic and understanding. Like me he hated the idea that his mother was sick. He just wanted the doctors to fix her up so she could return to being good old Mom.
I was never successful in convincing the rest of my family that breast cancer was a serious and deadly disease. My parents and brothers and sisters were all supportive, but I am not sure that they really understood how quickly breast cancer could kill a woman. I know that they had no idea how horribly sick Barbara became after the chemotherapy treatments. They only saw Barbara when she was feeling halfway decent or in between chemotherapy treatments. I think to them chemotherapy was more like the cure-all for the cancer, like taking an aspirin to get rid of a headache. But I knew that the harsh effects of the chemotherapy were literally sapping the life out of my wife.
Barbara’s parents and family lived on the East Coast in Cape Cod. She had one sister who lived in Phoenix, Arizona. They were all loving and caring with lots of phone calls and flowers and cards in support, but they never saw her during the treatment. So I am not so sure that they really knew how sick Barbara was during this time.
One person who did understand our predicament was my best friend, Jack O’Connor, who also lived in Phoenix. Jack was a retired lieutenant colonel from the Army. We had known each other since we were sixteen and in high school. During his Army stint, Jack earned a doctorate degree in exercise physiology, and his wife, Ellen, was an Intensive Care Unit nurse. I am sure that over the years that she had seen her fair share of cancer patients in the ICU. Jack called me often to offer words of encouragement. Jack and Ellen were both concerned. Jack offered to help check out the Cancer Center in Kansas City. He said that he had some friends in the medical profession and he would call them to get their opinion. I guess that he just wanted to help, so I agreed. A few days later he called me back and reported that the hospital and their staff in Kansas City had a very good reputation.
DEALING WITH FRIENDS AND COWORKERS: My friends at work were sympathetic, but there really wasn’t anything that they could do to help out no matter how many times they offered. They did remain supportive and always visited Barbara in the hospital and sent flowers every time she was admitted.
My boss at the time was understanding and he told me that nothing was more important than the health of my wife and that I should take whatever time I needed to be with her when she required it.
On many days I would sit around at work and discuss Barbara’s progress with my coworkers. They were all concerned not only for Barbara, but for my welfare as well. There wasn’t a day that went by that someone didn’t ask me how things were going. I told them the facts as I knew them and always tried to project a positive attitude no matter how bad I felt. I was never afraid to show my emotions to anyone, but I had such faith and hope that somehow we were going to beat cancer.
DEALING WITH GOD: I had always tried to live a good Christian life. Both Barbara and I were raised Roman Catholic and we had a good moral upbringing. We raised our sons in the Catholic faith and most of my family and truly great friends were practicing Christians. So I didn’t have a problem dealing with God because I had always dealt with him in my own way. I prayed a lot and always remembered the meaning of the words “Thy will be done” in the Lord’s Prayer. Every time I said that prayer I knew that if I really meant it, then I must be willing to accept whatever God did. That is not to say that I put the whole thing in his hands. Nor did I ever feel that God zapped Barbara with cancer for some evil that she had done, or that he was testing our strength. I simply came to realize that Barbara had a horrible affliction and if the doctors and all of the drugs couldn’t save her life, then it was in God’s hands. I did and still believe in miracles and that is where “Thy will be done” comes in so vividly. It was not up to the doctors, me, family, friends, or even Barbara’s positive attitude and strong will to survive. If God wanted to interfere and cure her, then it was his will and not anyone else’s.
DEALING WITH MYSELF: Throughout my entire life I had always been a problem solver. I worked hard to get resolution to everything. I was not always successful in getting the resolution that I wanted, and I made mistakes of judgment on occasion. I enjoyed a hard challenge and took great pleasure when I completed a task. But the challenge of helping your wife beat cancer was something that I never thought I would have to face. It just always seemed that since we were such a happily married couple that communicated well, that we would go on to the golden years together. I had a difficult time knowing that I couldn’t do a thing to cure Barbara from cancer. All I could do was fight with her and provide as much comfort and support as I could. I did a lot of soul searching and philosophical pondering about the meaning of life in general. I found that I had a hard time focusing on anything but the battle with cancer. It was consuming. It occupied my every thought. But during this time I also found that I had strengths that I didn’t know. When you are at your lowest ebb in your life, somehow you find the strength to carry on with your life. I found that I was much more pleasant with people than I ever had been before. At the same time, I found myself wishing that someone else had my problems. I would see couples in perfect health and ask, “Why not them?” Not that I really wanted them to have cancer, but I just wanted it taken away from us. I guess that I was just really angry and bitter that others had the perfect life that I once had.
During this time of anger, bitterness, sorrow, depression, and hatred of what we had been dealt, I never gave up hope. Only one look at my beautiful wife was all that I needed to keep me going strong and hoping for the best. Her spirit and character gave me such strength and courage. She faced the cancer with complete confidence that one day it would all be over and we could get back to the happy routine that we both cherished so much. Granted it would be a different life, because we would always live with the fear that the cancer would come back. But we vowed to each other that we would take it one step at a time. And the saddest part of it all was that we had very few choices except to do exactly what we were doing at the time. There is no magic cure when dealing with cancer.