Meeting the Oncologist

The day after my aunt Gail had arrived, we had our first meeting with Mom's oncologist. I am not sure why we thought it would be good for ALL of us to go to the meeting, but frankly, they couldn't have kept me out of the room. So, we all loaded up in the car - Mom, Paul, my aunt Gail, and I crammed into Mom's van and went to the Cancer Care Center at the clinic. We wanted to be there for support. We wanted to be there to hear it for ourselves. We wanted to be there so we would know what to expect, and because each of us had our own questions for the doctor. I wanted to know that she was competent, and she would not fail us. Mom wanted to know if there was truly no way to just have surgery. Paul wanted them to tell us they were wrong; well, actually, we all wanted that. Mostly, though, we just had to be there. We didn't even ask Mom, we just went along.

We went to the clinic, and as we were walking up to it, a building I had been in several times previously, I once again had the impression we were entering an airport terminal, instead of a medical facility. The Cancer Care Center is located in the "specialty" building, and is a fairly new facility. The entire front of the building is glass, with a huge three-story atrium, and three separate entrances, with carports and drop off areas for patients with special needs. It really does look like an airport. There are large waiting areas for each of the departments in the clinic, so that you are most comfortable after checking in, while you await your appointment. In the cancer area, there is a card table with a puzzle set up for the families of those waiting to be seen or for those waiting for chemotherapy patients. Gail and I are puzzle addicts, so of course, we headed straight for the puzzle table. Paul, who is still a smoker, headed outside to have another cigarette before the appointment, and Mom just sat there, waiting patiently. She didn't seem nervous, but she was very quiet, and I could tell that she was anxious to discuss her options with the doctor.

Finally, the nurse led us back to the examination room. It was immediately obvious to me that the clinic had spent too much money on outside appearances, and very little on exam rooms, because the four of us were ushered into a room which was no bigger than 9 x 10 feet, and since I am terrible at estimating sizes, that may be generous; trust me, it was small! Inside this very tiny room was an examination table, one patient chair, a stool for the doctor, a lamp, and a corner supplies counter and sink. I am 6'1" tall, and am no longer thin, and I am one of the smallest people in my family. So cramming the four of us into this tiny room was interesting. The door would barely open. It was quite uncomfortable, and very stuffy, and almost immediately, Paul couldn't take it any longer, and went back outside.

So, we waited, and we waited. I have never understood why we make appointments with medical people, only to wait until they are good and ready to appear. I understand that they are busy people, too, but then, so am I, and I really feel that my time is worth just as much as theirs, whether I am a physician or not. I realized as soon as I met the doctor that it was entirely unintentional on her part to make us wait so long, and that it was more likely that it was because she was a thorough, compassionate physician, and would take as long with a patient as she thought necessary to do her job.

Finally, shortly after Paul had returned, Dr. Penland came into the room, with a little bit of squeazing and moving around by the rest of us. I think she was overwhelmed by all of us, but she never showed it. She is a beautiful, tiny woman, and at the time was about 6 months pregnant. She came into the room wearing a lovely dress, and boots with 4-inch heels, which only made me respect her all the more, simply because I couldn't imagine walking around in those boots all day, particularly being pregnant. She took one look at all of us, and just introduced herself, and shook all of our hands. I was amazed she didn't ask anyone to leave. We had to collectively outweigh her 9 times over at least, but she took it in stride, and was completely at ease, which was comforting and reassuring, and I was immediately relieved to be in the hands of a competent physician.

The first thing she did was to open the door again, and ask the nurse to get some oxygen for my mother, in order to make her more comfortable, as Mom was wheezing a little, and still had a wet, nasty cough. She then sat down, looked my mother directly in the eye, and asked her whether she wanted the straight forward version, or should she soften the blow a little. Mom, being the person she is, asked for the blunt version. Dr. Penland maintained her direct gaze with my mother, as if the rest of us weren't even in the room, and explained to her that yes, as she knew, she had lung cancer, that she was considered to be extensive stage as it had spread to her chest cavity outside of the lung, and that there were 3 tumors on her liver as well. I asked her what type of cancer it was, and she looked at me and said the words I was dreading; mom had small cell lung cancer.

In hindsight, and after having done more research, I now know that whether Mom had small cell lung cancer, or non-small cell lung cancer, really wouldn't have made much of a difference, simply because of how far it had spread before diagnosis. The only difference is in the method of treatment, and what drugs they would use, but generally speaking, extensive stage cancer is what it is, and the prognosis for a new cancer patient is based mainly on the point of progression at which initial diagnosis occurs, not necessarily what type of lung cancer is found. At the time, however, I thought that those words were the worst we could hear, because everything I had read over the past few days had said that small cell lung cancer is much harder to treat, and doesn't carry with it the same prognosis at the outset; that the only hope for a cancer patient seemed to rely on the finding of non small-cell lung cancer. As soon as I heard those words, my hope diminished rapidly, and I began the process of resigning myself to her inevitable, impending loss. My aunt was silent, and Paul began to cry, as did I, but Mom just set her jaw, clenched her teeth, and nodded and said, okay what do we do?

Dr. Penland explained that there was no option for surgery simply because of how widespread the cancer was at the present time. She did explain that there were several types of chemotherapy that initially worked fairly well against small cell lung cancer, but that the cancer was resilient, and would quickly become immune to the medicine, and would again spread. She said that, in her experience, and no matter what she did, the cancer would spread, and that at best Mom might have a year to live. She said she could buy her some time, but that she would lose the battle, no matter what she did. The cancer was simply too fast-growing, too "smart", too adaptive, and that no matter what she did, Mom would die, perhaps very soon. But, she also said she was willing to try anything that Mom would tolerate, within reason, to keep her alive for as long as she could. She told Mom that she would do whatever it would take, but that she would also support Mom's decision, were it to be made, to not receive treatment of any kind; to preserve the quality of life, though that might mean less quantity of life. Mom steadfastly refused to walk away, and stated that she was willing to fight this disease with everything she had, and she wanted the chemotherapy, radiation, and surgery, if that were an option, but Dr. Penland again quickly assured her that surgery was out of the question.

During the first few days after Mom's diagnosis, I was under the assumption that since the cancer was so widespread at initial diagnosis, Mom had to have had it for years. I was convinced that she had simply ignored the symptoms for a very long time, and because she refused to go to the doctor for anything, she had written her own death warrant by allowing the cancer to spread so far before she finally sought medical treatment. Dr. Penland, however, corrected my assumptions by explaining that even though Mom's cancer was so widespread, she likely did not have it until just a few months prior to visiting the doctor. This is one of the worst parts of the disease; it's ability to multiply rapidly, and is precisely what makes it so hard to treat, as most people don't show symptoms of any kind until the cancer has already spread to other vital organs, and that happens within the first few months of the cancer starting. She explained that lung cancer was incredibly fast-acting, and was also the reason for the data findings of why people didn't live very long with that type of cancer; it was too insidious, and it was hasty about it.

This knowledge was vital for me at that precise moment, as it prevented me from blaming my mother for her disease for the most part. I did still blame her for having smoked in the first place, a long-standing disagreement between the two of us, but I could no longer be angry with her for failing to seek medical care more quickly. Mom said many times that she hadn't felt sick, still didn't really feel sick, which was making it so much more unbelievable for her that she was being told she was terminally ill. She just didn't feel like there was anything wrong, except that she couldn't breathe very well, but she certainly didn't feel like she was dying. Dr. Penland assured her that she probably didn't feel that way, because lung cancer creeps up on you silently, and spreads rapidly throughout the body, and that she wasn't alone in her astonishment; most patients were astounded with the terminal diagnosis.

Dr. Penland's plan was to start Mom on chemotherapy the following day, and to put her on oxygen to help her to breathe more freely. She also recommended that Mom allow them to attempt to drain the fluid from her lungs again. She explained that the medical facilities at the clinic were much more advanced than those in Glasgow, and that they would use ultrasound while they did the procedure, so they were sure they would not compromise the tumor itself, and that they would be more successful, and should be pain-free. Mom reluctantly agreed to the procedure with our encouragement, and was scheduled to have it performed that very afternoon.

Dr. Penland then went through the plan with us as to how the chemotherapy would be given; she was to receive chemo every day for three days, and then would have to return the following day, in order to receive a shot that would aid her body in continuing to produce red blood cells, something which is destroyed by the chemotherapy process. She would then have the weekend off, and start the process over again. She would have two weeks worth of chemo, and then three weeks off, and then repeat this process three times, through three courses of chemotherapy. Mom asked whether she could receive the chemo at home in Glasgow, as she lived some 275 miles away, and that it would be a hardship on them for Paul to miss much work, and for her to live with me and my family. It wasn't that she thought she wouldn't receive love and support at our house; it was simply the fact that when Mom is sick, she likes to be alone, and for it to be quiet; something with which my boys, who were 4 and 8 at the time, were unfamiliar. Dr. Penland explained that her request was reasonable, though she would not recommend it, as she really felt it would be important for Mom to be closer, in case there were complications. She insisted that my mother stay in Great Falls with us for the first course of the chemo, in order for her to make sure Mom would tolerate the drugs well, which my mother reluctantly agreed to do.

We all piled back into the van, and drove home in silence; each of us lost in our own thoughts and attempts to comprehend the news we had just been given. Paul took Mom back to the clinic that afternoon to have her lung drained, and this time, thankfully, the procedure was pain-free and produced immediate relief for her. She was breathing much more freely, and was much more comfortable at that point. We all discussed what would be done, and Gail offered to stay for the two weeks of treatments, so that she could take Mom back and forth to her appointments, and so that Paul could return to work. So, Paul went home, Mom and Gail moved in to a hotel close to the clinic so they could have some peace, and we all awaited the first chemotherapy dosage the following day. I was anxious for this process to begin immediately. If time was of the essence, I reasoned, then why weren't we administering the chemo immediately; why wait 24 hours when we had already waited 5 days to see the oncologist? That was my impatient side, but the clinic needed time to order the medicine, and to schedule Mom into the chemo center. None of that mattered to me, all I knew was that Mom was dying, and that her only hope, a very small one, was to have the chemotherapy, and hopefully, it would work. So, even though I was secretly hoping she would refuse to take any treatment, preferring that she be kept comfortable for as long as possible, instead of purposely poisoning the rest of her body in an attempt to kill the cancer, I was also grasping at the small hope that the treatment would work, and we would be able to save her.

Unfortunately, however, modern medicine has done almost nothing against this disease for the past three decades. The drugs that were to be administered to my mother were the only ones that had ever been found to have any effect at all, and it only bought people some time; inevitably the cancer won, 100% of the time. My mother, however, was resolved that it would be different for her; that she would be the miracle, and she, the avowed atheist for most of my life, another long-time point of contention between us, began to pray fervishly, and to read everything she could that was positive, and hopeful, and she grabbed onto the hope like it was the only flotation device in the ocean, and she never waivered from her resolve, not for a minute.

Telling People

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.

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...

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.

Diagnosis Cancer

I remember the day my mother called me to tell me she had cancer like it was yesterday. It was April 10, 2007, a date which may be further burned into my brain because, as a tax accountant, it wasn't great timing. That sounds so cold and calculating to say it wasn't great timing, for after all, when would be a good time to hear your mother has the one thing you had feared most and it will definitely kill her, very soon? But, I can't help it. It was the worst timing in the world for me personally.

My mother and I have always had an interesting relationship. We got along much better on the telephone than in person. We had different tastes in things, an obvious difference in work ethic and drive, and yet, we were very close and very similar too. We fought a lot. But she was also my touchstone. The one person to whom I could turn, no matter what was going on in my life. For most of my adult life, this relationship was mainly by telephone. I talked to her regularly about everything. Particularly about my children, and venting about my husband or work, or she would tell me about Nascar, her passion. We talked about people from our small town; who got married, who got divorced, who moved away, who died. We talked about the weather, and our yards, or whatever funny thing had happened that week, or a good movie we had just seen, or a good book we had just read. We talked often, and for hours sometimes.

I knew, then, that she had not been feeling well. She was fighting a cold, and it had gone to her chest, and she sounded awful. When she was sick like that, I would call her more often, trying to urge her to go to the doctor, because she just wouldn't do it. She had to be very sick indeed, before she would actually go to the doctor. That week prior to the diagnosis, she was quite sick, and I was trying to convince her to be seen, as was her husband. Finally, she was so bad, that her husband convinced her to go to town, so she called to tell me she was going in to the emergency room, for whatever she had to do, because she was really ill.

I had a premonition about this. For several months I felt it coming, I knew something bad was coming, and I told my girlfriend about it at pool league one night. She looked at me like I was crazy. But I knew it. So when Mom called me that day, I had a feeling it was very serious, and I hung up and called Ellen. Ellen, my best friend, is an adminstrator at the hospital, and a nurse. I told her Mom was on the way in, and asked her to go check on her for me, as my home is some 275 miles from where my mother lived. She said that she would do it, and I left for my office. After all, it was tax season, and five days from the biggest deadline of the year.

A couple of hours after I got to the office, Ellen returned my call to tell me that Mom was getting some more tests done, but that she looked good, and was on some oxygen to help her breathe because of the fluid in her lungs, and that they were admitting her to the hospital. I believe that is the only time Ellen has outright lied to me in her life, but she did it for my mother. My mother, who always had her own version of reality, and lied to me many times in my life, which is yet another story, asked Ellen to lie to me, so that she could tell me the news herself, and my best friend in the world did it. I forgive her.

Unbeknownst to me, Ellen had arrived in my mother's room at the hospital only to find her completely falling apart after what she had just been told, and she was alone. Generally speaking, medical personnel will not tell someone they are terminal without someone else being there to support the patient. However, my mother, being the forceful and forthright person that she was, insisted they tell her the outcome of the tests before her husband had arrived, and thus was left alone. Ellen, who grew up with my Mom too, provided that support for a time until Paul and Mom's brother, Gary, had arrived. I appreciate the fact that she was there for Mom that day, and so did my mother.

Around 3pm that afternoon, when I was still not done for the day, but after most things had quieted down somewhat, I picked up the telephone to call Mom and see how she was doing, thinking innocently that she had pneumonia or something, because Ellen had assured me it wasn't anything terrible. There was something in her voice as she answered the phone, and I could feel it coming. She said, "Cheri, it isn't pneumonia. I have cancer." Then she broke down.

I remember I was standing up when I dialed the phone, because I don't stand up often enough when I am working. I collapsed into the chair, and made her repeat it. She gathered herself, and then said, "I have lung cancer. It's in my lungs, and my liver, and my chest cavity, and they are giving me three to six months to live." She said it exactly like that, just a list, a list of where the cancer was, and that it was hopeless. I sat there, tears streaming down my face, head hung down between my knees so I didn't faint, and I couldn't speak. I couldn't say anything. For several seconds we sat there, we two, both of us silently crying, 275 miles away from each other, on the telephone like we had been for thousands of hours in our lives, but no words, just crying.

Finally, I asked what was the plan, and she said she just didn't know. She said that all they would tell her was that it was lung cancer, and that she had maybe three to six months to live, and that there was nothing that could be done. She asked me to call my brother, and her sister and brother from out of town, and her best friend, and anyone else I could think of, because she just couldn't do it. It was all she could do to tell her husband, and her little brother, and especially me, and it was now my turn to tell the world that she would be leaving us soon. I couldn't talk any longer, and neither could she, so we probably had one of the shortest conversations we ever had. We both tried to eke out the words, I love you, as best we could, but we were both sobbing as we hung up the telephone.

I sat there for several minutes in my office chair, simply sobbing, as quietly as I could, so as not to disturb my staff, but they heard me. Finally, I got up, and went to tell them what I had just heard, and that I was leaving for the day. I packed up the work I was doing, and some extra to take home with me, because, after all, it was tax season, and I had to keep moving. I got in a loaner van from my client who is a tire dealer, as he had my Jeep in order to put new tires on it, and started to drive across Great Falls to my house, along the infamous 10th Avenue South strip, four lanes of ridiculous traffic for a town this small, and I lost it completely.

I can't be in a car by myself for too long without crying at some point. I have spent countless hours in cars by myself over the years; commuting in Washington DC, or driving across the country from Virginia to Montana, or driving on pretty much every major highway in the state of Montana at one point or another, and some of them, so many times I know every turn and hill. I do a lot of thinking in cars, even on short distances. So, as soon as I was in the minivan, I lost my composure entirely, and started to audibly sob, almost to the point where I was having trouble seeing.

Suddenly, about halfway across town, I looked in my rearview mirror and focused long enough to see a police car behind me with his lights flashing. I looked down to make sure I wasn't speeding, which was impossible in the traffic anyway, but I wasn't, so I couldn't figure out why he would be stopping me. I was in the left lane, in lots of traffic, at a terrible part of town to be turning left, but finally found an outlet, and was in the turn lane to turn left, when the cop started to walk up to me to talk to me. I couldn't figure out how to open the window, so I opened the door instead, and as we were still in the turn lane between four lanes of traffic, I asked if he didn't want me to finish pulling off the street; what an idiot, by the way. Finally, I pulled over and he came up to interrogate me, as I struggled with trying to figure out how to lower the window. Finally having opened the window, I asked him what I had done wrong, to which he responded that he needed to see my license and registration. I was still crying, and trying to calm down, so I am sure I looked a mess. I asked again what I had done, while I retrieved my license from my purse, and explained to him that I wasn't crying because he had pulled me over, but rather that it was due to some tragic family news I had just received.

He proceeded to tell me, sarcastically, that my license plates were overdue some six months. I blurted out that it wasn't even my car, in fact, I didn't even know where the registration was, and that it was the property of the tire store. Finally, after searching every cubby I could find in a vehicle I knew nothing about, I found the registration to prove to him it was not my vehicle. He ultimately calmed down a bit, as he realized he wouldn't be able to ticket me that day, as I was an innocent party, and let me go with the stern warning to tell my client to get the situation fixed before he went lending vehicles to customers in the future.

Finally, I was able to finish my drive home, a little calmer after the situation with the police officer, so in hindsight, it was probably good he pulled me over. I was much more composed as I entered the house, and proceeded to tell my husband and children the terrible news about Mom. Then, I went to my office to plan. I am a planner, and a doer. I don't sit idly by watching the world, or simply letting it happen. I plan, and I act. So, I went to my office, my hole, as Rusty calls it, and I cried, and I cried, and I thought, and I planned. Do you know what they say about the best laid plans?

Blogging to Heal

My mother died on December 28, 2008. That seems a lifetime ago now, and yet, it is still so fresh in my mind. Every word, every moment, seared into my memory, until they come drifting up at inopportune moments, making me panic, and suck air into my lungs to try to prevent the inevitable shudder and wave of pain that erupts from my core.

I have been threatening to write a book for quite a long time. I may still do that. But at this point, a blog seems easier, quicker, cheaper, and so, I will blog instead. I will blog to try to attempt to heal my soul, and to get some of this out, in order to address it finally, and then, hopefully to let it go, and to survive, to survive death.

My mother, Barb, died in December. She was diagnosed with terminal lung cancer that had already spread to her liver, and outside her lungs to her chest cavity and spine. It was April 10, 2007. She was given three to six months to live if they did nothing, and six months to no more than a year if they did everything in their power to combat the disease. She was basically encouraged to go home, say goodbye to everyone, and enjoy whatever time she may have left.

Barb chose to fight it with every ounce of her being. She endured four different courses of chemotherapy, radiation therapy to her brain after suffering a grand mal seizure from the brain tumor that developed, and a month before she died, she survived a bowel impaction that was so severe she almost succombed to the sepsis alone. Still, she made jokes, never complained, rarely asked for help, and steadfastly denied she was dying, preferring instead to insist that she was going to be the miracle, the one in a million that actually beat the thing. She lasted eighteen months.

I don't know what was worst: watching her die, or being unable to talk to her about her dying. She refused to entertain the discussion. She never let me say what I needed to say, to apologize for ever giving her anything to worry about, for always arguing with her, for not agreeing with everything, for having different taste than her. She never let me thank her for being my mom, even though I have played the ungrateful, little brat card a time or two. She never told me exactly what should happen with her things, other than a couple of key items, and she never answered my questions as to what kind of obituary she wanted.

The only thing she ever said was that she wanted her ashes spread at the lake where her mother's were spread, and so that is what we did. We had to say goodbye to her ashes, because she wouldn't let us say goodbye to her. Maybe that is what is really bugging me. Probably it is much more than that. But that is enough for now.

This blog will be a memorial to that journey that we took together. Every thing I can remember about going through that experience, how I attempted to handle it, how it made me feel, and hopefully, at the end, I will have figured out a way to survive her death and move on.