September 16, 2002
Living with Mets - A Husband's Perspective
Carlene Gale Kouba Behrens
January 3, 1956 - September 17, 2001
Over 24 years ago at an office Christmas party, she spilled a drink on a shy, dancing-challenged young man. Little did they know that drink contained super-glue. For over 22 years, she and I were happily married, our greatest achievement being our two children. This is a brief story of the last years of her life, told from my perspective.
My wife Carlene, was a breast cancer survivor for over seven years. For almost six years, I had little to do. She was capable of understanding the disease and the course of action. Then the bomb fell. It had metastasized to her bones. It was now Stage IV. Terminal. No cure. A matter of time. 98% of all patients die within five years. Get your affairs in order. Tell the children this is serious. Take your trips, do what you have always wanted while you can. Prepare.
In April 1994, an unusual patch of skin led her to a malignant biopsy. Because the tumor had both lobular and ductal characteristics, both breasts were removed and one of her stomach muscles shoved up to maintain a woman's shape. Later, a pinch and a tattoo completed the restoration; everything replaced except for the nerve endings. Adjuvant chemotherapy with Cytoxin, Methotrexate, and 5-Fluroricil (CMF) was performed for six months. Her prognosis was good. Only one lymph node showed involvement. We were happy. Life moved on with plans for the far future. We laughed as we Raced for the Cure. Our children kept us busy.
Over the next few years, minor local recurrences were zapped by radiation, turning the reconstruction area both the lovely shade and texture of raw hamburger. Tamoxifen ®, Lupron,®Zoladex ®, were used as hormonal agents to keep the invisible (undetectable?) cells off balance. I explained to people that we suspected there were weeds in the lawn, but by applying the pre-emergent herbicide, they might not germinate. The numbers resulting from the tumor marker CA27-29 were watched but not considered reliable. But, the numbers trended upwards over the years. Unsuspecting, she had the semi-annual bone and organ scans performed in early 2000.
The Mets Course
Generally, a bone scan indicates areas where the bone is having a lot of activity - the good kind due to healing, or the bad kind. Carlene's bone scan showed three hot spots. What does that mean? The one on her hip could just be due to a bump or fall.. A second hit on a rib may also be explainable. But, that one on her neck vertebrae, that's the clincher. The good news was her organs are clean! (I asked - what is the detection level of the scanners? A small tumor containing 100 billion cells? So it can't see one containing only 50 billion cells?) The better news is that many people live a long time with only bone disease (the 2% who make it to five years).
Now came the hardest decision of our life. Which straw should we grasp? Surgery and radiation were no longer curative options because there were (or will be) too many spots. The chemical options were the only choice. So we read, become more confused, and got second and third opinions from the experts in the field. As I began to comprehend the choices and looked at the statistics, I realized that my wife was now a guinea pig and that even the "best way" of treatment had horrible odds (50 to 75%) of delaying death by only a few months. As we read and talked with the doctors, we got the sense that because it was only in the bones, it was slow growing and we had time to try several chemotherapy drugs. Because we enjoyed the activity in our lives, and with the help of our doctor in understanding that response to these drugs either does or does not occur, we grasped the straw that preserved quality of life. We were lucky. For over a year we lived our normal lives. Normal in the sense that we traveled every two months and did as much as possible together, because of the unspeakable reality of the future.
After a few months, a cracked rib and more bone spots indicated she was on the unresponsive side of the curve for the first drug, Xeloda ®. Another round of what ifs led us to consider a developmental drug (Faslodex ®.) that would destroy the estrogen receptor sites on the tumor cells. After having her ovaries removed to absolutely, positively, ensure the cupboard was bare, this drug gave us a tantalizing hope with only one dose. She was feeling some bone pain, which could indicate tumor flare, the telltale sign of the bastard cells dying. Unfortunately, her breathing was becoming impaired. A dry unproductive cough indicated that her lungs were now under attack. X-rays indicated that she had run out of time to play around with quality of life treatments. It was now time for the gold standard - Taxotere ® and Adriamycin.
Dealing With People - My Role
As hard as it is to deal with the disease within our relationship, I had more trouble with family and friends. Unless they have been intimate with cancer, they still believed doctors are gods. You take a pill or a shot and you are cured. Cancer is not bacteria or a virus invading your body; it is a part of your body that has gone crazy. Returning those affected cells to sanity is not possible. Destroying them without killing the rest of your cells is not a simple proposition. Otherwise, the War on Cancer would have ended long ago.
Shortly after the mets diagnosis I read Advanced Breast Cancer: A Guide to Living with Metastatic Disease by Musa Mayer. My wife had gone with her sister to San Diego for the weekend. The book tells the truth, in all of its beautiful and painful reality. I cried. I vowed to never let her travel without me again. It was at this point I became fully cognizant that my wife was going to die in the near future. To keep my focus on dealing with the immediate issues, I erected a mental wall that I could not see through or past. At times, thoughts would come over or around the wall but I would file them away, and tell myself - I will think about that later. The wall was black and impossible to determine its distance. But, it was real. As I walked towards it, I could hear echoes. I also joined Club-Mets http://www.acor.org/club-mets-bc.html - an online group of men and women searching for support with this disease. Daily reading the questions and answers provided a sense of community, unfortunately in the club no one wants to join. The periodic notices of a member permanently signing off kept me focused on my role.
It was difficult to talk to people who would discount the serious of her illness, offering comments like - she doesn't look ill, or just pray, or go visit this doctor (who often turned out to be yet another Internet quack). Two typical events caused me pain and sorrow. They are similar in style - the let's wait attitude and more damaging, the let's do it now because?.
In the summer of 2000, Carlene expressed strong interest in a trip to the Czech Republic, which is her family heritage. As we discussed a possible trip with her parents, they did not want to go in the summer or fall because the weather would be better in the spring. That opportunity never arose again. I was silently screaming "do it now". I knew the end was coming, but not when, and so why wait? On the other hand, my parents, approaching a 50th anniversary, offered to take the extended family on a cruise a few years early so she could be there. At first, I thought that was nice. Then, I thought through the implication -she and I might want to celebrate something now because she may be dead then. I declined. If they wanted a 47th anniversary cruise, fine. But, I could not go early. You have to do things for the right reason. In the past year, we traveled to many places, but never to celebrate future events.
Discussing the disease with friends was not easy, but it was necessary. One, it kept me focused on the current treatment effort. Second, it let me convey the seriousness of what was happening without alarming my wife. But most important, it kept me from denying the reality of her impending death. Being always aware of that, all sorts of unimportant things remained unimportant.
Even prior to mets, I worried about our children. Our son had his heart set on an out-of-state college for several years. I discussed with him how some decisions have implications that cannot be avoided or reversed. I knew that his mother would die while he was away. For a long time, I could not rationalize his decision. At last, I was able to accept his choice, realizing that we had raised him to be a good person and that distance was not a critical factor. Whether he was near or far, what was to occur, would occur. Our daughter has matured quickly, knowing nearly all her life that cancer was a part of her mother.
In the last year, as both our son and daughter realized some of the implications of the disease, the typical teenage-parent friction lessened. In their own way, their mother's illness accelerated their maturation. For that, I am happy. They have an understanding of the preciousness of life that will be with them always.
The End Game
In early June, her labored breathing and dry cough became serious. On an evening walk around the block, the effort was so strenuous that we went to the office the next day. Some x-rays and tests showed that interstitial lung disease was underway. The hormonal therapy doctor in Houston and her oncologist agreed we had lost our waiting time, and needed to go after it aggressively. Soon, she had her first dose of Adriamycin and Taxotere ®. The gold standard. We were to stay on that for a while and then reconsider the hormonal drug later, perhaps.
After the July 4th weekend, her breathing was still labored so we checked into the hospital for a few days to have cardiovascular tests performed. They confirmed her heart was fine (it was efficiently moving blood throughout her body), but her impaired lung cells were not providing the required mass transfer rate of oxygen (I am an engineer - sorry). We were discharged and came home on oxygen. And, possibly with a festering staphylococcus infection. Three days later, July 17 she was in raging pain and gasping for air.
By late afternoon, the symptoms had not alleviated and the clan was being gathered. Her heart was beating at 135 for over 10 hours. The hospital staff asked about the DNR. Of course we had one and had discussed it, but when they asked her, she wanted to stay and fight. It was at that moment that I realized what her first surgeon meant when he said seven years earlier, no one dies from breast cancer. They die from complications. Because the brain senses a lack of oxygen in the body, it tells the heart to circulate more blood through the lungs. But, there is no oxygen sensor to tell the brain the lungs are impaired. Eventually, the heart muscle suffocates and cardiac arrest occurs. She was going to die from a heart attack that night. Or worse, she might awaken with a tube in her throat and stay in the hospital for the rest of her life. As we said our worried good-byes, we were angry. This was not fair. The gold standard chemotherapy had not had a chance to work! We prayed for that chance. Dying from cancer was supposed to be peaceful, and at home, not in the frenzy of the ICU.
That evening, salvation arrived in the form of the pulmonologist. This species of doctor is rarely seen in the outside world, since all of their patients are having difficulty breathing. A quick glance at her x-ray and he was confident that the fluid in her pleural space could be drained, allowing her impaired lungs to have more room to expand. Less than an hour later, she was stabilized. Although not a lot a fluid was removed, it helped tremendously. The following day, a chest tube was inserted and over the next two weeks, three liters of fluid was removed, as antibiotics were administered with a second round of chemo. As she came home from the hospital, we were thankful that she left upright in a wheel chair. A third chemo dose was delivered at the oncologist's office in early August.
As she was recovering her strength, I drove our son off to start college 1,300 miles away. She and her father arrived at the airport, wheelchair in tow, and I hooked up the oxygen cylinders brought cross-country. We toured the campus, met the deans and roommates, heard the convocation speeches, and took the pictures of a proud mom and her son on the edge of adulthood. She reluctantly abandoned our plan of driving home together. What would we do if we had to enter a hospital 700 miles from home? Leaving Elvis and Graceland for another trip, we convinced her to fly home with her father. It was to be her last flight.
After Labor Day, we went to the oncologist for round four. His concern over the swelling caused him to suspend the use of Taxotere ® this time. Next visit, he said, we will discuss other options. The way he said it made me cry. A day later I made the phone call. I had three questions prepared to ask him, but only two were necessary. She was not responding to the gold standard. When that occurs, odds are miniscule that she would respond to any other drug. He estimated three months or less.
I went home and told her. She said, let's get a second opinion. I scheduled a visit to M.D. Anderson for September 18, about a week before her next office visit, to have other options examined. I had told my employer that it was time for me to stay home for the duration. What a wonderful, loving experience it was. Over the next two weeks, I watched her physical capabilities decline by 5-10% a day. At the end of the first week, she could no longer climb the stairs to our bedroom, which had been an important daily goal. Eating became sporadic. At rest, her breathing was easy, and she often removed the canula. Trips to the bathroom became our dance, with me finally getting the steps right as I lead her on the 50-foot circle of oxygen hose.
On Friday September 14, I flew our son home for a surprise visit. Fortunately, air travel was again permitted after the tragedy in New York. I had gone to my daughter's high school volleyball game while her parents stayed with her. I brought my daughter home from her game, and picked up my son from the airport. At home, he slid around the back of her chair and said Hi Mom!. She levitated and said What are you doing here? Her yellow eyeballs sparkled with joy. It was a wonderful weekend. Saturday we celebrated her father's birthday and on Sunday the Priest said mass in our living room. We received the Anointing of the Sick and Holy Communion. Prior to taking my son to the airport Sunday afternoon, I asked him to give her permission to let go. He did. She was such a fighter.
Early Monday morning she woke and went to the bathroom. It was time for a breathing treatment, so she sat in the recliner and I prepared the nebulizer. At 4 AM, I was hopeful she would go back to sleep and I could get a little more rest. She coughed several times and I noticed blood in the mask. Another nosebleed. We moved to the couch and tried to stop it. For two hours. I called her parents for help, one hand dialing the phone, the other holding the bloody tissue paper. They arrived and we worked for two more hours. Hospice advised us to go the emergency room. Pondering how to transport a bleeding patient, we called EMS. The fire truck and ambulance arrived and woke the neighborhood and off we went, all for a silly nosebleed. The Coumadin ® and the disease had thinned her blood. The ER doctor packed her nose and sent us back home. Looking at the blood test results, he said, "Soon". Early afternoon, I got a haircut and dropped by the local funeral home, to find out how the system works and just to let them know I would need their services in the next week or so. When I returned home, she was sleeping peacefully. Actually, she had slipped into unconsciousness. At 2:30, we called our daughter home from school, my parents from a nearby town and the hospice nurse. Over the next three hours, friends and relatives came by, offering encouragement and praying for her and us. At 5:30, she died. At 5:45 I called our son and told him to come home.
We have always had an open house in the neighborhood and that night it was packed, with friends and family, and food and wine, and laughter and stories. It was like many of our parties that I had on video, except I was not laughing and I could not find my wife. After a week of sleeping in a recliner, our bed seemed exceedingly large. Early the next morning she told me "get up and write my eulogy" so I did, starting with when we first met. Once the eulogy was drafted, I was sleepy but ten minutes later she said "you forgot my childhood", so I wrote another page. The next morning, she was not satisfied with the reading for the funeral mass. Again I got up and searched the Internet until I found what she wanted in Proverbs, 31. When one finds a worthy wife, her value is far beyond pearls. Her husband, entrusting his heart to her, has an unfailing prize. She brings him good, and not evil, all the days of her life. She is clothed with strength and dignity, and she laughs at the days to come. She opens her mouth in wisdom, and on her tongue is kindly counsel. She watches the conduct of her household, and eats not her food in idleness. Her children rise up and praise her; her husband, too, extols her: "Many are the women of proven worth, but you have excelled them all." Charm is deceptive and beauty fleeting; the woman who fears the LORD is to be praised. Give her a reward of her labors, and let her works praise her at the city gates.
Her rosary and funeral were attended by hundreds of friends and family and both were beautiful ceremonies. I kept wondering, why wasn't she here to enjoy it.
The Next Steps
A funeral is somewhat like a quick wedding. Except that after all of the preparation and ceremony and visitations you are staring into an abyss instead of bliss. The physical exertion of the care-giving effort and the emotional toll exhaust your energy. For over a week, I did little but sit in a chair and nap and think. After the physical body is renewed, mental numbness sets in. I could not commit to doing anything. I had lost my social coordinator and was worried I would have some conflict if I tried to go anywhere. Dealing with the grief of the loss was the most emotional. Tears welled up every time a new future event was conceived and then modified due to reality. Attending church and seeing the pew I would sit in for my children's weddings (the pew we sat in for her funeral) or watching a family group at a Baptism tore my heart. The thought of continuing past holiday rituals cannot even be entertained. As the feelings of despair and sorrow rolled over me, I turned to our earlier discussions - you must go on, do right for the children, live the rest of your life. Having the time to rest and think, I developed several ideas that may be helpful to others. Earlier, during her illness, I had erected a mental wall. That wall was now gone and all those thoughts were free to be examined.
The New Box
One day while doing some yard work I realized that two people had been buried: my wife, and the husband of a terminal cancer patient. Me. A new person was created - the widower. He would have many of the same characteristics of the husband, but he was also different. He certainly was unsure of himself. In addition, it would take some time to become used to that role. Nevertheless, the old role was gone. With that realization, all of the knowledge and insight I had gained during our struggle became trivia. I could feel my interest in cancer waning. As a tribute to her, and the other women and men in this situation, I vowed to tell this story.
With the passage of time, there is a need or feeling to clean house. Carlene had many things that could be used by others. Offers to help were made, but I needed to do this in the right order. I wanted to touch everything one last time. Some clothes and shoes were special like the rabbit ear slippers, to be saved in her box for future remembrances. Other items could be used by my daughter or relatives. So I did the first sorting and then asked for help. There are still some things remaining, but I have plenty of space so it is not time-critical. The good jewelry is in the safe deposit box, waiting for the children to use it. The costume jewelry was sorted into bags, so all her friends can have a piece or two.
Of all the activities undertaken, this has been the easiest. Carlene was an accountant and so we have very good records. Even still, it is a complex area. The will she signed two years ago is now her final instruction to the world. On the day of her death, the taxman created a new entity - her estate. It consists of half of everything we had. It needs to be valued as of that date. Everything. That chore took me the better part of three weeks. But, it was mind clearing and got me back into a sense of doing something productive. With even a modest estate, pre-planning is critical to ensure that things occur as you want them to. As the lawyer filed the will in probate court, I saw a crowd. The guys in three-piece suits were proving that death isn't cheap, while the other lost souls wondered what to do next. The older widows were often accompanied by a friend or relative.
Childbirth and Death
I used this analogy in discussing grief with our children. The pain of childbirth is intense. A rational being would only do it once. But, that pain is forgotten as the child grows and provides happiness to the mother and father. Grief after a death is like the other side of the mirror. The absence of the person causes you to remember the good times and you are sad because they will never reoccur. But, history never reoccurs. The past good times are always just memories. You try to project future events, ignoring the physical change that the body goes through. You know that the cancer will never repair the body, and yet you envision future events without a wheel chair and oxygen and the drugs. Each time I start to grieve for future events, I try to picture her in her last days. And, I realize it was God's plan to give us the time we had together. He was always with us, providing strength and love.
Another thought I gave to my children and her parents was the idea of uniqueness in grieving. At times, I feel like I am adjusting to the new reality quicker than others. There are several possible reasons. First, I have known her death was coming for over 18 months. From the time Dr. Death said "it has metastasized", and we asked, "so what does that really mean?", the inevitable had been foremost in my mind. Second, a spouse is chosen from a large group of people. In your early days, you spend time interviewing a number of candidates for that role. The one you pick is special, but you also know subconsciously that there are other people who might have filled it. However, to family members there is only one first child, oldest sister, mother, or aunt. That role was not a choice, it was God-given and can never be replaced. Their grief is different from mine in a subtle but significant way. Knowing and understanding the difference both helps and hurts.
I may find another companion and partner, but my wife's position in their lives can never be replaced. If and when I find a new partner, how can she fill the shoes of a saint? Who would want too?
A World of Mannequins
As a happily married man for over 22 years, I was comfortable in the presence of other women, married or single. My wife and I trusted each other and our fidelity. I had a security blanket. In a sense, other women were store window mannequins. I might notice a coat or the clothes (or some other feature), but not the face or the person. I and they had superficial relationships. They were not real. Now they are. The security blanket is gone and I have to wonder what did she mean by that. I hope that I will remarry. I miss my wife greatly, for herself, but also for the communication and companionship that is integral to a happy marriage, which is a tribute to her. Life is lonely by myself, even with a teenage daughter. In middle age, there are few friends I can call and say - let's have some beer tonight and party! They reply, I'll have to ask my wife first.
Day by Day
People want to help. They will ask questions. The most common is, how are you? For a while, I said I was on an elevator in a tall building that opened to various floors. Some floors I could explore, others I could not. Now, I have moved to, I've had better days and I've had worse days. There really is no appropriate quick response. But, thank you for asking. When you visit with others who have had a loss, I suggest you ask, tell me about a good memory you had today of ______. That is a wonderful way of showing concern and respect.
Retrospective - A Question for the Oncologist
Can you do anything to help? In all of the procedures and treatment Carlene undertook, I have to question if any were actually productive, i.e., did any extend her life. None "cured" her. The cancer always came back, to new areas eventually. Actually, "came back" is not the correct term. Progressed is probably better. At times we can't see it and so we don't think it is there, but months or years later it shows up. Was it ever really "gone" or just below the radar level of current technology.
And yet for some lucky women, they only have to worry about it coming back (after the initial procedures) for the rest of their lives. Knowing the side-effects of the treatment regimen and the fact that the success of various drugs falls in the range of a coin flip, I have to ask "why don't we have predictor tests"? A swab of your throat will determine if you have strep and that penicillin will kill it. If it is negative, that treatment is not performed. The patient is spared the side effect and society is spared the expense. Having excellent insurance coverage, it is impossible for me to determine the total dollar cost of her treatment. I estimate it at over a half million dollars. Other than the initial surgery which removed a 2.5 cm tumor, and the palliative radiation treatment, I really wonder if any of the drugs extended her life.
Or perhaps, the mere fact that the medical industry was doing something was mental support to keep her going. Perhaps we are in a transition period in which these types of treatments are necessary experiments prior to the day that gene therapy can be used to regulate cell growth. It is a question I and others should always ask. Is this really going to help? Ashes to ashes, dust to dust.
In loving memory of my wife.
For more about the online support group, Club-Mets-BC
The Unfortunate Club: or, Who Needs A Mets-Only List?