Telling people about a cancer diagnosis is a very tricky affair. Who do you tell? What do you tell? When do you tell them? Whose job is it to tell other people? News like this can spread like wildfire through a family and a small community. It snowballs, as more and more people tell others, thankfully, actually, so that you don't have to tell everyone. Then, when you think there can't possibly be anyone else to tell, you have to say it again, to someone else, in the grocery store, or at a gas station. You run into someone you haven't seen for years, and they innocently ask you about your mother, and you have to tell them. You prepare a speech, the easiest, quickest way to say it; you blurt it out, and then wait for the inevitable questions, some more personal than others. You respond with the same answers you have repeated over and over to each person you have to tell, and you feel like a broken record.
The night of the diagnosis, I first telephoned my aunt, Gail, my mother's sister, to whom I am quite close, and actually with whom I have much more in common with than ever with my mother. We all laughed about that many times, because I am more like Gail, and her daughter, Lynn, was more like my mother. Mom and Gail were two years apart, and were incredibly close. Growing up in Lewistown in the late fifties, they were inseparable, always double dating, always together. Our family has always been close, with family vacations planned together in Fort Peck every summer that it was possible, so even though disbursed all over the United States for much of their lives, they saw each other as often as possible, and have always come together in a family crisis.
I don't know what I was thinking when I picked up the telephone to call Gail. I should have composed myself better, because I was a mess. I had just told Rusty, and marched downstairs, and picked up the phone without thinking, and before I knew it, Gail answered. I said, "Gaa-aa-iii---lllll..." and fell completely apart, and was unable to speak. My poor aunt tried to remain calm, and tried to get me to tell her what it was, what horrific thing had happened, urging me to speak for several minutes. Finally, I said, "Mom". So, she said, "Ok, your Mom, what happened?" I am sure she thought Mom had been in some horrific accident or something, as she was relieved when I told her it was just cancer, and that she was still alive. We spoke for a little while, as I calmed down, and then she offered to tell her brother, Erik, to my relief; the fewer people to tell that day the better for me.
Gail is very pragmatic, and simply purchased a plane ticket and came to Great Falls. I was so thankful, because she, too, is like a mother to me. I love her dearly, and depend on her in these situations, as a voice of reason, and calm. I needed her, and she came, without question, without an invitation, she just came; it was, of course, what she would do. As soon as I picked her up from the airport the next evening, everything was better, because she would be there too, to help pick up the pieces, and to help Mom, because my stepfather, Paul, was working, and needed to keep working, because my mother was retired, and he was the bread winner in the family, and the only reason they had health insurance, thankfully. So, Gail would come, and would help us through whatever was needed, which was an immense help. Telling Gail was easy in the end.
Telling my brother was a whole other matter, however. My brother, Terry, has never been good in these types of situations. He simply retreats into himself, and can't speak, and just cries silently; you can tell he is still there because he is sniffling but there are generally no words. He has never been good with death, or even interpersonal communications, so at times of crisis, he is often simply unable to function. He puts up his blinders, and keeps working and going about life, and chooses to not really address the situation, because he is unable to control the emotional swell, and refuses to speak about it, to anyone, particularly not to me. In that way, I am now realizing, he was really very similar to my mother. Perhaps that is why they were so close; they always had this incredible bond. He was her angel, and she, his protector and constant supporter. Terry simply lived his life, and she loved him no matter the situation. I, too, love him, but I have never understood him. Mom never endeavored to understand him. It was her gift; blind acceptance without a need to analyze and fully understand - it is my nemesis at times, because I always analyze and need to understand.
I telephoned my brother, and as I expected, he got very quiet, and cried, and ended the conversation as quickly as possible. He wanted to be kept informed, but he wouldn't come from Tennessee, as that was cost-prohibitive. It has always been about money for him, even if someone offers to treat him, he will likely refuse as he neither has the money, nor does he wish to owe anything to anyone. As I hung up the telephone, I once again silently thanked Gail for coming, because I knew that Terry would be unable to be a support to me, and I would be no support for him, because as was his way, he wouldn't let me. I hoped, as I hung up the telephone, that he would allow his wife to support him, but I just don't know, because I haven't spent enough time with her to know.
The only other person that I had to tell that day was Sandy, and that, too, was not easy. Sandy was my mother's best friend. They met in Germany in 1969, both in their mid-twenties, with young children, and young, handsome GI husbands in the Air Force. They were immediate best friends, and kindred spirits, and would spend the rest of their lives as near one another as they could manage. Telling Sandy was difficult, as she does not have my mother's strength, and because she is my other mother. Sandy and my mother became best friends when I was five years old. I don't have very many memories from my childhood that don't involve Sandy in one way or another, and her children are like my siblings. Sandy quickly became worried, and insisted on ending the conversation, and telephoning my mother herself. They needed each other, and needed to discuss it with each other.
Whether you tell the person yourself, or they hear it from someone else, really doesn't prevent you from having to discuss the disease with everyone with whom you are close or not, however. It seems I was constantly discussing it with anyone and everyone, both in person, and on the telephone, particularly in the first few days. My uncle, Erik, had been informed of the diagnosis by his sister, Gail, but still insisted on telephoning me personally, partly because, we, too, are close. Sandy's daughter, Cheryl, my "big sister", also called me to offer her support. My father called from Alabama, after having been told of the cancer by my brother. I am sure they all meant well, and I did need to talk to each, but it doesn't make it easier.
For me, I was suddenly immersed in this world of telephone calls and personal discussions, finding myself saying much the same things over and over, particularly early on, because everyone is searching for answers. That is how the human mind works, I think; searching for some answer, something to make sense, for something to seem more "normal" than the current situation can possibly be. We are faced with the realities of life just when we are attempting to ignore them, and so we talk it over with others, attempting to analyze the situation, to find something concrete to hold onto while we are careening out of control emotionally. At least, that is how I felt about it. I needed to discuss it with others. I have always been a talker, a sharer, on too personal a basis at times for some people's comfort level, but also being unable to keep it all in, I tend to spill to anyone who will listen, anyone who wants to spend the time, and it has been many people over the years.
So, I spent my time talking it over, discussing the options, waiting for the meeting with the doctor, and wanting someone to give me something to cling to, something positive, some reason to hope. What I learned through this journey was that, you can just hope. Even if the situation appears to be hopeless, it can't prevent you from having hope. You can just hope, and no one can stop you. No one would ever stop my mother from hoping.
Wednesday, August 26, 2009
Thursday, August 13, 2009
The Waiting Game and a Face to Face Meeting
Life is a game of waiting; waiting to grow up, waiting to get out of school, waiting to get married... but, the waiting becomes more pronounced when you introduce cancer into the mix. You wait to go to the doctor, even though you instinctively know something is wrong, simply because you are frightened to learn the truth. You wait for the results of the tests, and then wait for the doctor to tell you some kind of prognosis, which is never specific, always generalized. You wait for the medicine that you need to be ordered, wait for your first appointment, wait for the chemotherapy to drip into your body and kill the good cells as well as the bad. You wait for your hair to fall out, you wait for your hair to grow back in, you wait until the chemo has had time to have some effect before they can even test you again, wait for those results, wait to hear you are in remission, wait to hear that the cancer is back, wait, wait, wait... wait to die. You can always wait to die.
Waiting is torturous for me. I have never been a patient person, and can't ever sit still for very long. I want to know it all. I want to have the facts, to research the issue, to affect some change in the situation, to act. So, for me, waiting for my mother to come to Great Falls for the first time, and to meet with the oncologist, made for several of the worst days of my life. I wanted to know the facts, from someone other than a doctor in the sticks in Montana, and I wanted to know exactly what kind of cancer we were dealing with, and what was the plan. That word again, the "plan". Realistically, I knew that no matter what specific type of cancer it was, it was fairly hopeless anyway, because the cancer had spread so far already. Still, I wanted to know all the facts, to hear some type of prognosis, to be presented with some type of timeline so that I could properly respond with my own plan of action.
More so, however, the waiting was terrible simply because I wanted to see Mom in person, to hold her, to hug her, and to tell her how much I loved her, how much I would miss her. That was my plan anyway, or my dream. I envisioned this emotional, dramatic meeting where we would rush to each other, and cry together, and say all the things we never were able to say to each other. We would have the type of relationship I had always longed for, because sickness can change a person, can't it? Doesn't dealing with one's own mortality tend to change a person? It did for me, immensely, but then, I had survived, so maybe that is different. Still I had hope that my mother's illness would somehow change her, too.
The truth of the matter is that my mother, whose love for me I never questioned, was not a touchy-feely type of person; never was, even when I was little. I don't ever remember sitting on her lap. I faintly remember sitting beside her reading poetry, but never on her lap. I never slept in her bed, or snuggled her on the couch. She was proud of that, and actually sort of "lorded it over me" in regard to my sons and their tendency to come into my room and sleep with me, which I have always encouraged, and enjoy, and miss now that the older one has outgrown it. My mother would always hug me to say hello, and hug me to say goodbye when I would leave to go back to college or back to wherever it was I was living, but she rarely ever even touched me most of the time. There are many pictures of her with her arm around me, but that was for the picture, not a normal occurrence.
She did have an annoying habit of petting me when she was talking to someone else about me; she would run her fingers through my hair, or pat it gently while she talked about me. I hated it, and told her so, but she thought it was funny, and if Mom thought something was funny, even if she was the only one to find it amusing, she would do it; anything for a laugh. That was Barb. She was a funny lady, always witty, always finding a way to make others smile. So, for her, physical contact wasn't necessary unless there was some need for it, like in order to make a joke on someone, or for a group picture. It wasn't that she didn't deeply love the people in her life. She just preferred to probe a person's mind and personality, rather than their physical being.
She was a bright woman, and a great conversationalist; she loved life, loved to laugh, and read voraciously. She was incredibly emotional about many things, but she buried it when it came to personal matters. She would cry at movies, books, even the occasional commercial. She would cry at any wedding, even that of a complete stranger; she would cry when she was happy, or when she was sad, or when someone would surprise her with a really personal gift. One time, I gave her two framed photographs I had taken for Christmas: one of her two brothers, and one of her son, whom she hadn't seen in a couple of years. She opened the one of my brother first, and proceeded to cry, and almost wouldn't open the other for fear it was of me, and it would make her cry again. Because, she hated to cry about herself, or show her own emotions. She rarely ever let them show, and when she did, when they would well up in her beyond her control, it would anger her. She would get this look of determination on her face, and clench her teeth, and force them back down again, and then change the subject.
She had done this to me on the telephone. During our second conversation after diagnosis, at a lull in the conversation, I had started to cry, and I blurted out, "I don't know what I am going to do without you." She didn't respond. I couldn't see her, but I knew what face she was making, and she said nothing. Then she changed the subject, telling me when her appointment would be, and when to expect her. Stupidly, I thought that I would be able to tell her these things in person, that she wouldn't be able to change the subject because we would be face to face, and so I waited. I waited to see her, all the while anticipating what I would say to her when we were finally alone, when we could finally have the conversation I had longed to have for an eternity.
She arrived the day before her appointment, and got out of the van with her two little dogs, and came walking up to the house, just like she had many times before, but something was different. She wouldn't look at me. She wouldn't really make eye contact with me. She gave me a cursory hug, and came in to sit down in the living room, and proceeded to tell her husband, Paul, where to put stuff, and tell me what to do with the dogs, and tell the boys hello, but she wouldn't really look at me. I played along, because I knew she would not want to talk about it, particularly in front of my husband, and my kids.
She was very fearful of what her illness would do to the boys, because they were very close, particularly with my younger son, who was only four years old at the time of her diagnosis, and with whom she had always had a very close bond. He sat on her lap all the time, and they would read or watch a movie together. I was proud of her for that closeness, because my son is a very physical child, and I don't think he gave her much of a choice - he was on her lap from the day he was born, and loved every minute of it.
The diversions of the boys, and husbands continued until late that evening, after supper was finished, and the boys had been put to bed for school the next day. I learned from my mother that she had gone into the hospital to have her lung drained, but that they had botched the job, and poked her too high up in the lung to get much fluid, and that it had been so incredibly painful the first time, she had refused to let them insert the needle a second time. So, she was still not breathing well, and was choosing to sleep on the recliner in the living room instead of laying in a bed, as she was more comfortable that way, and didn't cough as much. Actually, she usually slept in the recliner when she came, a habit she picked up when my boys were babies, and she would come and lay in the recliner with them in her lap and they would take long, wonderful naps together. She was a good grandmother, and more physical with my boys than she ever was with me, for which I am thankful.
We discussed when her appointment was the next day, and when her sister, Gail, would arrive from Texas, and who would pick her up from the airport. Gail, upon learning of the diagnosis, insisted on coming to Great Falls for the initial meeting with the oncologist, which was a blessing, as I couldn't have gone through this ordeal without her. The only thing of a personal nature that my mother said to me was that Paul was a mess, as was her brother, Gary, and that she couldn't handle it when they broke down on her, and that I was going to have to hold them up, because she couldn't. That was it. I started to cry, and she got this disgusted look on her face, and looked away, and clenched her teeth. She just couldn't have that discussion, she couldn't say what I needed her to say, and she couldn't hear it from me. It wasn't necessary. She knew what it would do to all of us, she knew that her death would be the hardest thing in the world for me, she didn't need me to articulate it. She couldn't hear it, wouldn't be able to read it, would never be able to entertain that discussion. That one time, that one instance was the only time we ever got close, and it was gone in a flash, in an instant.
I think, maybe, that her opinion was always that one was supposed to live each day with that love and companionship, so that it was never questioned, so there was never a need to actually address it. She always felt that if the love was always implied, it need never be implicitly spoken. She always told me she loved me at the end of a telephone conversation, and when saying goodbye at the end of a visit, but it was always in passing, and never with eye contact, as that would be too personal. She never needed for me to tell her what she meant to me, never, ever wanted me to say it, she couldn't take that emotional swell, couldn't hold back that wave of pain and love that would well up in her. She was afraid it would drown her, I think. She never liked being out of control in that way. The clenched teeth, and the averted gaze said it all.
So, I swallowed my emotions, as I had countless times in my life, particularly during puberty, and I said, haltingly, "I love you. Good night." Just like she wanted, just like I always had, in passing, no eye contact, just those words, simple, short, sweet, and to the point. I went to bed, and softly cried myself to sleep, just as I had on countless other occasions in my life, for many, many reasons. I just laid there, tears streaming down my face, running off my nose, dripping onto my pillow, as I came to the realization that there would be fewer and fewer times that I would be allowed to even say those few words to her, and that one day, it would be over, and she would be gone, sooner than I would like, and that I would never be able to say to her all the things I longed to say, because no matter what, she was going to be Barb to the very end, and she would never allow me to bare my soul, not to her. One day, I will write a book about it, and I will tell all. A book she will never have the chance to read. It's probably a good thing, as I would never be able to convince her to sign the release anyway. One day...
Waiting is torturous for me. I have never been a patient person, and can't ever sit still for very long. I want to know it all. I want to have the facts, to research the issue, to affect some change in the situation, to act. So, for me, waiting for my mother to come to Great Falls for the first time, and to meet with the oncologist, made for several of the worst days of my life. I wanted to know the facts, from someone other than a doctor in the sticks in Montana, and I wanted to know exactly what kind of cancer we were dealing with, and what was the plan. That word again, the "plan". Realistically, I knew that no matter what specific type of cancer it was, it was fairly hopeless anyway, because the cancer had spread so far already. Still, I wanted to know all the facts, to hear some type of prognosis, to be presented with some type of timeline so that I could properly respond with my own plan of action.
More so, however, the waiting was terrible simply because I wanted to see Mom in person, to hold her, to hug her, and to tell her how much I loved her, how much I would miss her. That was my plan anyway, or my dream. I envisioned this emotional, dramatic meeting where we would rush to each other, and cry together, and say all the things we never were able to say to each other. We would have the type of relationship I had always longed for, because sickness can change a person, can't it? Doesn't dealing with one's own mortality tend to change a person? It did for me, immensely, but then, I had survived, so maybe that is different. Still I had hope that my mother's illness would somehow change her, too.
The truth of the matter is that my mother, whose love for me I never questioned, was not a touchy-feely type of person; never was, even when I was little. I don't ever remember sitting on her lap. I faintly remember sitting beside her reading poetry, but never on her lap. I never slept in her bed, or snuggled her on the couch. She was proud of that, and actually sort of "lorded it over me" in regard to my sons and their tendency to come into my room and sleep with me, which I have always encouraged, and enjoy, and miss now that the older one has outgrown it. My mother would always hug me to say hello, and hug me to say goodbye when I would leave to go back to college or back to wherever it was I was living, but she rarely ever even touched me most of the time. There are many pictures of her with her arm around me, but that was for the picture, not a normal occurrence.
She did have an annoying habit of petting me when she was talking to someone else about me; she would run her fingers through my hair, or pat it gently while she talked about me. I hated it, and told her so, but she thought it was funny, and if Mom thought something was funny, even if she was the only one to find it amusing, she would do it; anything for a laugh. That was Barb. She was a funny lady, always witty, always finding a way to make others smile. So, for her, physical contact wasn't necessary unless there was some need for it, like in order to make a joke on someone, or for a group picture. It wasn't that she didn't deeply love the people in her life. She just preferred to probe a person's mind and personality, rather than their physical being.
She was a bright woman, and a great conversationalist; she loved life, loved to laugh, and read voraciously. She was incredibly emotional about many things, but she buried it when it came to personal matters. She would cry at movies, books, even the occasional commercial. She would cry at any wedding, even that of a complete stranger; she would cry when she was happy, or when she was sad, or when someone would surprise her with a really personal gift. One time, I gave her two framed photographs I had taken for Christmas: one of her two brothers, and one of her son, whom she hadn't seen in a couple of years. She opened the one of my brother first, and proceeded to cry, and almost wouldn't open the other for fear it was of me, and it would make her cry again. Because, she hated to cry about herself, or show her own emotions. She rarely ever let them show, and when she did, when they would well up in her beyond her control, it would anger her. She would get this look of determination on her face, and clench her teeth, and force them back down again, and then change the subject.
She had done this to me on the telephone. During our second conversation after diagnosis, at a lull in the conversation, I had started to cry, and I blurted out, "I don't know what I am going to do without you." She didn't respond. I couldn't see her, but I knew what face she was making, and she said nothing. Then she changed the subject, telling me when her appointment would be, and when to expect her. Stupidly, I thought that I would be able to tell her these things in person, that she wouldn't be able to change the subject because we would be face to face, and so I waited. I waited to see her, all the while anticipating what I would say to her when we were finally alone, when we could finally have the conversation I had longed to have for an eternity.
She arrived the day before her appointment, and got out of the van with her two little dogs, and came walking up to the house, just like she had many times before, but something was different. She wouldn't look at me. She wouldn't really make eye contact with me. She gave me a cursory hug, and came in to sit down in the living room, and proceeded to tell her husband, Paul, where to put stuff, and tell me what to do with the dogs, and tell the boys hello, but she wouldn't really look at me. I played along, because I knew she would not want to talk about it, particularly in front of my husband, and my kids.
She was very fearful of what her illness would do to the boys, because they were very close, particularly with my younger son, who was only four years old at the time of her diagnosis, and with whom she had always had a very close bond. He sat on her lap all the time, and they would read or watch a movie together. I was proud of her for that closeness, because my son is a very physical child, and I don't think he gave her much of a choice - he was on her lap from the day he was born, and loved every minute of it.
The diversions of the boys, and husbands continued until late that evening, after supper was finished, and the boys had been put to bed for school the next day. I learned from my mother that she had gone into the hospital to have her lung drained, but that they had botched the job, and poked her too high up in the lung to get much fluid, and that it had been so incredibly painful the first time, she had refused to let them insert the needle a second time. So, she was still not breathing well, and was choosing to sleep on the recliner in the living room instead of laying in a bed, as she was more comfortable that way, and didn't cough as much. Actually, she usually slept in the recliner when she came, a habit she picked up when my boys were babies, and she would come and lay in the recliner with them in her lap and they would take long, wonderful naps together. She was a good grandmother, and more physical with my boys than she ever was with me, for which I am thankful.
We discussed when her appointment was the next day, and when her sister, Gail, would arrive from Texas, and who would pick her up from the airport. Gail, upon learning of the diagnosis, insisted on coming to Great Falls for the initial meeting with the oncologist, which was a blessing, as I couldn't have gone through this ordeal without her. The only thing of a personal nature that my mother said to me was that Paul was a mess, as was her brother, Gary, and that she couldn't handle it when they broke down on her, and that I was going to have to hold them up, because she couldn't. That was it. I started to cry, and she got this disgusted look on her face, and looked away, and clenched her teeth. She just couldn't have that discussion, she couldn't say what I needed her to say, and she couldn't hear it from me. It wasn't necessary. She knew what it would do to all of us, she knew that her death would be the hardest thing in the world for me, she didn't need me to articulate it. She couldn't hear it, wouldn't be able to read it, would never be able to entertain that discussion. That one time, that one instance was the only time we ever got close, and it was gone in a flash, in an instant.
I think, maybe, that her opinion was always that one was supposed to live each day with that love and companionship, so that it was never questioned, so there was never a need to actually address it. She always felt that if the love was always implied, it need never be implicitly spoken. She always told me she loved me at the end of a telephone conversation, and when saying goodbye at the end of a visit, but it was always in passing, and never with eye contact, as that would be too personal. She never needed for me to tell her what she meant to me, never, ever wanted me to say it, she couldn't take that emotional swell, couldn't hold back that wave of pain and love that would well up in her. She was afraid it would drown her, I think. She never liked being out of control in that way. The clenched teeth, and the averted gaze said it all.
So, I swallowed my emotions, as I had countless times in my life, particularly during puberty, and I said, haltingly, "I love you. Good night." Just like she wanted, just like I always had, in passing, no eye contact, just those words, simple, short, sweet, and to the point. I went to bed, and softly cried myself to sleep, just as I had on countless other occasions in my life, for many, many reasons. I just laid there, tears streaming down my face, running off my nose, dripping onto my pillow, as I came to the realization that there would be fewer and fewer times that I would be allowed to even say those few words to her, and that one day, it would be over, and she would be gone, sooner than I would like, and that I would never be able to say to her all the things I longed to say, because no matter what, she was going to be Barb to the very end, and she would never allow me to bare my soul, not to her. One day, I will write a book about it, and I will tell all. A book she will never have the chance to read. It's probably a good thing, as I would never be able to convince her to sign the release anyway. One day...
Saturday, August 1, 2009
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.
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.
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