Best Laid Plans

I have always been a planner. It comes from my "Type A" personality, or as my husband says, because I am anal retentive. I plan for everything, and drive myself crazy in doing so, because things can never turn out the way one plans. Life is too full of choice and chance for plans to always succeed, no matter how well laid in advance. So, realistically, how could one plan to combat a disease like Cancer? It affects each person differently, because each of us is different. It grows faster or slower depending on the person, their health, their age, their genetic makeup, and the best laid plans will change in the blink of an eye, without warning, and without having obtained your opinion; against your will, and beyond your power to prevent its happening. That really didn't matter to me at the time, however, I wanted to plan.

I don't think I slept a wink the night of my mother's cancer diagnosis. I am not much of a sleeper anyway, being a natural insomniac and night owl, but I really didn't sleep that night. I spent most of the night doing research on the Internet, and trying to wrap my head around the fact that my mother had just been diagnosed with a type of cancer that was virtually unstoppable at this time, and at such an advanced stage it seemed there was nothing to be done. Every source stated that if the cancer was initially diagnosed at a point where it had already spread to other major organs, there was nothing that could stop it. They could possibly slow its progression for a short period, but its eventual advancement was inevitable, and beyond the control of "modern" medicine. I spent the entire night pacing, reading, crying, reading some more, searching for something else, some shred of hope.

In the morning, I composed myself as best I could, and I telephoned my mother again, hoping she had had a better night than I had spent. We were both much calmer this time, however, having had our own time to come to terms with it somewhat, so it was a little easier to communicate, though I learned she had not slept well either. I asked her to tell me everything again, and she proceeded to tell me what had occurred the prior day.

Mom had gone into the emergency room, and the nurse on staff was the same nurse who had been diligently working during much of my grandmother's final weeks and days prior to her death. This nurse knew my mother well, so when the chest x-ray had shown the mass in her lungs, she was affected by the diagnosis, and unfortunately, had several conversations with my mother throughout the day. Additionally, I learned there was some young gun doctor, who would later play an even bigger, more disturbing role, on the staff that day that my mother had never seen before, but who had also provided his personal opinion to my mother regarding her disease.

Before I go on, let me say that I personally have had a ton of experience with members of the medical profession at one time or other throughout my life. I was quite adept at injuring myself when I was younger, and those events, along with my own personal bout with thyroid cancer at 20, and an aortic aneurysm at 28, which was fortunately discovered and required open heart surgery to repair, has left me with my own personal opinion of the medical profession. My older son was born five weeks early, which were spent in the hospital, and required countless visits to the doctor for a couple of years. In addition, I watched a man, who was like a big brother to me as our mothers were best friends since our childhood, die of a brain tumor at 27 years of age. I have also watched all of my grandparents battle with, and succomb to, cancer, or the effects of its treatment, so suffice it to say that I was well rehearsed in spending hours in the hospital, and dealing with doctors and nurses.

One of the biggest problems, I believe, in the care of cancer patients at this time, is that members of the medical profession can't even get together on what they present to a patient, and some do not keep their personal opinions to themselves. On one side, you have the cutters and the treaters; the ones who will resort to surgery at any price, or treatment at any cost, because why shouldn't we use every available medical tool at our disposal? On the other side, you have the ones who believe that maybe some of that isn't so good, that chemotheraphy maybe isn't the right choice for everybody, or that surgery, if it leaves you incapicated, maybe shouldn't be an option. As a result of this, some of the people in the medical profession have become jaded; simply functioning in a job that gives them a paycheck, but emotionally removed from the situation at hand, preferring instead to go about their business and not make personal connections. However, some medical professionals become like family, always supportive, always joining in on the conversations taking place in the room, or asking questions and answering questions, preferring to engage the patient, and to become friends. Sometimes these people, with only the best of intentions, tend to step over the line, however. Particularly in a small community where everyone not only knows everyone else, but actually knows generations of their families.

This is what occurred for my mother on the day of her diagnosis. She had gone to the hospital, finally, and against her will, simply thinking she was just really sick this time. Bronchitis, maybe even pneumonia, was on her mind, not cancer. She really was blindsided by the diagnosis. She knew she was sick, but not that sick, she just thought it was a bad cold. However, after several tests including an x-ray and a CT scan, she was starting to become suspicious. The nurse that day took it upon herself to confirm the cancer diagnosis to my mother, before her husband arrived, basically on Mom's insistence, but clearly against hospital policy. Not only did she confirm the diagnosis, which was not even her position to reveal, but then she proceeded to tell Mom that, really, there was nothing to be done about it, it was too far advanced, so she should just go home and wait to die. That was actually my mother's impression of what she heard that day from the nurse. I was flabbergasted.

Then Mom said the young gun doctor she had never seen before, who had waited until Mom's husband and brother had arrived the way he was supposed to do, came into the room, and basically said the same thing. The doctor said the CT scan revealed that there was a large mass in her left lung, and that there were tumors on her liver and spine, and that he said to her that if it were him, he would choose to not undergo treatment, and that she would be better served to just go home, say goodbye to everyone she loved, and die peacefully. Then he discharged her with no further instruction other than for her to return to the hospital the next day to have a surgeon drain the fluid from her lung. That was it, no referral to an oncologist, no further tests, no medicine of any kind, just go home and die...

For those of you who know me, learning of my next move will not be a surprise. As soon as I hung up from my mother, I telephoned the hospital, ascertained the doctor's name, and left an urgent message for him to return my call. I needed to talk to the doctor myself, to hear it myself, to get the details that had alluded my mother. I needed to take over, in essence, at least that is what I felt, though it was ultimately against my mother's wishes. At the time, however, I needed to control things that had suddenly careened out of my control.

The doctor did return my call, and actually fairly promptly. He proceeded to explain to me that yes, my mother had lung cancer, though the culture had not come back to reveal exactly what type of lung cancer. He confirmed that there was a large mass in her left lung, that it was compromising the narrow space that connect the two lungs, which was why she was having so much trouble breathing, and that her left lung was full of fluid. He also said the CT scan had revealed three tumors on her liver, and the lung tumor had also metasticized to outside of the lungs into her chest cavity, and that there were two spots on her spine suggesting possible involvement of the spinal cord as well.

I asked him if he really told her to "go home and die" and if there really wasn't more of a plan than that. He kind of stumbled before responding that yes, he did iterate to her that his choice, were it him, would be to forego treatment, and to enjoy what little time there was left with family and friends. However, he stated, he would, of course, provide her with the number of an oncologist if that was her choice. He also confirmed that she was to come in later that day to have the fluid in her lung removed, stating that it would be the best thing at the moment, because she should feel some immediate relief from the treatment, and should be able to breathe much more freely. I must say, that if this had happened, say thirty years ago, I would not have been as mature as I have fortunately now become, because I did not, as I was formerly prone to do, scream obscenities at him and ask him, "How on Earth could you say something like that?" I remained calm, thanked, him, and tried not to tell him how to do his job, as I urged him to do his job.

My mother lived in rural Montana; in remote, rural Montana. The available medical facilities in her area of the state are adequate for most day to day and sustenance treatments, but for many problems, residents of that area are forced to travel a minimum of 250 miles for treatment. In the case of cancer, there is one oncologist who travels to her area on a once a month basis, for one day, and patients can receive chemotherapy in that hospital, but for radiation, patients are referred to one of two larger cities in Montana. I happen to live in one of those cities, so I insisted the doctor refer my mother to an oncologist in Great Falls where I live, so that were she to choose this route, and were she to need to receive treatment on an ongoing basis in some place other than near her home, she would still be comfortable, and it would cost considerably less.

If I have any regrets about my conduct during this ordeal, it might be this choice to step in and insist she come to Great Falls. In hindsight, I am so happy she did so, because ultimately, we spent much more of her limited time left together than we would have had she chosen to be seen in Billings instead. However, I think she was disturbed that I stepped in, and though she never said it plainly, was a little perturbed that I had made this choice for her. It was the last choice I made for her. I recognized it as soon as it was done, and shortly thereafter retreated into a purely supportive role for the duration, though that was incredibly hard for me to do, as you might imagine.

I must also reveal, however, that to seek treatment at all was not my choice for her anyway. I would have chosen quality of life over quantity; that is my philosophy. But then, I have, twice, been personally affronted with my own mortality, and feel blessed to still be here at all. I have also seen, firsthand, the brutal toll that chemotherapy and radiation can take on a person. I would have been wrong in my mother's case. She tolerated the treatments well, thankfully, and she was able to have much more time with us than she would have had she chosen to "go home and wait to die". Going in, however, I would have chosen that she do just that. We are, were, two totally different people, however.

She chose to live. She chose to fight to live. She chose to see an oncologist, and take whatever incredibly small chance they would give her. That was the plan. She chose to come to Great Falls, to see an oncologist, to take chemotherapy, to have surgery if possible, to have radiation, to "not go quietly into that good night" to steal one of my favorite phrases. She chose to live.

The plan was to go to the doctor, to remove the fluid, and then to come to Great Falls and see the oncologist in a few days time, because, unfortunately, and incredibly, that is how long it takes to get an appointment with an oncologist in this state. No matter what the prognosis is, no matter the urgency. Cancer has become so prevalent, to seemingly epidemic proportions in this state, that it takes days to even be seen by an oncologist, to even begin treatment.

This, of course, was not sufficient in my mind, but it was only the first of many times that I would be frustrated with the doctors, frustrated with the system, and in general, frustrated with the entire situation. My job was to no longer formulate the plan, but to go with the flow, to allow my mother to make her own choices, to be a support to her, and allow her to go on her own journey, while I simply watched and waited. It would be the hardest thing I have ever done in my life.