Living in the Moment
My son left for his new adventure in New York today. His whole life is waiting for him. He's not sure what he's going to do but he has a couple of interviews and my niece to mentor him. Every aspect of his life is up for worry. I have no worries anymore. I'll always be concerned about having enough money but we should be comfortable. I have nothing to do but try to stay alive until I die. Insurance takes care of medical bills and my disability insurance payments take care of other bills. I have no purpose but to exist. He and I are at opposite sides of life right now.
I'm sure other retirees go through the same transition. I know my dad did. He must have had twenty jobs over the course of his retirement. Chemo keeps me from getting too excited about finding another job. I'd be too tired. It is certainly a challenge to go from being stressed to the max over everything to just dealing with staying alive. I like not worrying about a job but I hate being useless. My mind is still waiting for marching orders while my body does nothing but record new reactions to the poison flowing through my veins (lately it's been super-sensitive teeth). I've wondered what it would be like one day to not have to worry about work. It's good, it's actually possible and it is very freeing. My job used to run my life. My life now exists as an entity of its own.
Perhaps this is my time to learn to live in the moment. Face Book says happiness can only exist "in the moment." My past was too hard and my future unknown so all I can do is get into the present. I've tried meditating with Oprah and Deepak but am not very successful. My ideal schedule would be - wake, meditation, breakfast, yoga, reading and writing, lunch, pool time, nap, dinner, news, documentary or movie. I'm sure that would get boring quickly too but it'd a good place to start and my day needs structure. I need to feel that I am still improving myself and contributing to society. So, even if no one ever reads this blog, it will be a witness to what I did during my limited time to learn to deal with acknowledging my mortality while living every moment.
Saturday, May 30, 2015
Friday, May 29, 2015
Relativity
Reality check today. We travelled to Tampa to see
the surgeon at Moffitt Cancer Center. My oncologist wanted me to talk to him
about the pros and cons of removing all the breast tissue that was left for
reconstruction along with some of the lymph nodes in an effort to more
completely remove all the cancer. Removing all the lymph nodes gives you
“Popeye” arms with the resulting lymphedema. It would be difficult for him to
decide which nodes to remove if he didn’t remove them all. He explained
that he didn't like to do surgery on Stage IV patients because we already know
that the cancer has escaped into the rest of my body and even if we were able
to remove some diseased tissue, we could not get all the microscopic cells with
any other weapon than chemo.
Realizing that I will be on and off chemo the rest
of my life was tough. There will come a time when the chemo is no longer
effective or when the collateral damage of the toxicity of the chemo on the
rest of my body results in something else killing me. Surgery would be a waste
of time and excess trauma for my body. The other advantage of leaving the
breast tissue in is that the cancer is more likely to return to that area and
so it would act as my "canary in the mine" alerting me to the
cancer’s return. The best I can hope for is a clinical trial that might
cure it or at least knock it down for long periods of time to give me breaks
from the chemo.
I also realized I will never have hair again or
eyebrows or eyelashes – weird what pops into your brain.
While I was sitting in a sort of stunned paralysis
sipping coffee at Perkins, a teenager was rolled to a table in a wheelchair. He
was immobilized head to toe but could move his eyes. I immediately felt like
God had slapped me upside the face. If he were my child, I would be
offering to take his place, have cancer, whatever. I realized that I would
negotiate with God for my child…maybe not for me but for my child – absolutely.
Maybe I already had. Maybe Nicki and David are healthy because I already made a
deal with God – who knows? I just know that my situation didn’t seem so
overwhelming anymore. We are all going to die. I just know a bit more about how
and when. My child is not strapped to a wheelchair with some horrible disease.
Everything is relative. Having this happen to me rather than one of my children
is so much easier. My heart went out to that mom who had to watch her child
suffer every day. I have to remember to not lose perspective.
Moffitt is located on the campus of the University of South Florida. I
immediately made a mental note to learn more about the university for my
students then realized that I will not be going back to work as a guidance
counselor. I watched as the people around me were all doing their jobs and knew
how much those jobs occupied their minds and lives. Taking care of a family and
doing my job are all I've ever known. One of the things I loved about my job
was that it connected me to the community, to families, to other schools and
teachers and of course, to the kids. It was more than just a job; it was my way
of contributing to society. All that is gone and all I have to
concentrate on now is this damn disease. Now that I know I am not going
back to my job, I have got to find something else to do. I cannot let dealing
with cancer consume me.
Friday, May 22, 2015
Caregivers
I honestly don't know how I could have gotten through this without my husband, John. There were times when I couldn't walk 5 steps without having to rest. He fed me, cleaned the house, did laundry, shopped and saved my life a couple of times by insisting we go to the emergency room when all I wanted to do was sleep and see if I were better in the morning. I have no idea what all of this has taken out of him. He can't exactly tell me how hard it is. He can't talk to my kids about it without feeling that he is complaining about something that he sees is his responsibility "for better, for worse, for richer, for poorer, in sickness and in health..." I was explaining about life insurance and how it would be split among John and my kids when my son said, "John should just get it all, he takes such good care of you." I was really impressed that David was able to appreciate all John does and make such a selfless offer.
On good days, I try to do all I can to make up for the days when I do little else but sleep or rest on the couch. It's just not fair that he has to do it all although I have to admit that if the situations were reversed, I probably wouldn't notice any difference. Doing it all seems to be the normal job description for most moms. I'm just not used to having someone take care of me and all the things I used to handle. Since it is easy to work on my laptop, I still take care of the bills and the real estate business, insurance, and all the medical stuff (which involves quite a bit of time as the bills roll in faster and faster.)
What really drives me nuts is having to rest and have all the things on my "To do" list fill my brain. It takes a tremendous amount of control not to suggest that John adopt my list as his own and show the same enthusiasm I have for getting everything on it done. I have to remind myself that he is 65 and has Parkinson's, He gets tired easily and has a lot on his mind dealing with both his illness and mine.
At least he has his boat. He loves to fish and has wanted a boat all his life. His sons are coming down for Memorial Day week and he is looking forward to spending every day on that boat fishing with them. His daughter-in-law and two grandsons are coming too. That's what I'm anticipating the most. The boys, are 1 and 3 and absolutely adorable. We get to see them so little however, that each time is like the first and we have to get to know each other all over again. I just hope that they don't get upset about my being bald. I'm also worried about planning things for them to do since i have so little energy. Their mom is great though and understands the situation. It won't be much of a vacation for her taking care of the kids while the guys are fishing. I'm hoping we can go to the beach, use the pool and find some local things to do with the kids. I'd love to just give her some time to herself while I watch the kids. I remember how much that meant to me when I had small children. It is much more comfortable to me to be the caretaker.
On good days, I try to do all I can to make up for the days when I do little else but sleep or rest on the couch. It's just not fair that he has to do it all although I have to admit that if the situations were reversed, I probably wouldn't notice any difference. Doing it all seems to be the normal job description for most moms. I'm just not used to having someone take care of me and all the things I used to handle. Since it is easy to work on my laptop, I still take care of the bills and the real estate business, insurance, and all the medical stuff (which involves quite a bit of time as the bills roll in faster and faster.)
What really drives me nuts is having to rest and have all the things on my "To do" list fill my brain. It takes a tremendous amount of control not to suggest that John adopt my list as his own and show the same enthusiasm I have for getting everything on it done. I have to remind myself that he is 65 and has Parkinson's, He gets tired easily and has a lot on his mind dealing with both his illness and mine.
At least he has his boat. He loves to fish and has wanted a boat all his life. His sons are coming down for Memorial Day week and he is looking forward to spending every day on that boat fishing with them. His daughter-in-law and two grandsons are coming too. That's what I'm anticipating the most. The boys, are 1 and 3 and absolutely adorable. We get to see them so little however, that each time is like the first and we have to get to know each other all over again. I just hope that they don't get upset about my being bald. I'm also worried about planning things for them to do since i have so little energy. Their mom is great though and understands the situation. It won't be much of a vacation for her taking care of the kids while the guys are fishing. I'm hoping we can go to the beach, use the pool and find some local things to do with the kids. I'd love to just give her some time to herself while I watch the kids. I remember how much that meant to me when I had small children. It is much more comfortable to me to be the caretaker.
Wednesday, May 20, 2015
Acknowledging Death
In reviewing the tons of literature available regarding the human response to death and dying, Ernest Becker's, The Denial of Death, Free Press Paperbacks, 1973, is mentioned often. Becker's hypothesis is that everything we do, all culture, all history, every decision is because of our fear of death. As an infant realizes that its total existence is dependent upon the good graces of its mother, the toddler then adolescent becomes gradually familiar with a continued sense of vulnerability with the awareness of the concept of death. Becker, being a devotee of Freud, is a bit hard to read since he insists on Freud's stages and misogynistic tendencies to be undeniably true. Nevertheless, his theory is that fear of death can be tamed by courageous acts. Courageous acts or heroism, require the opportunity to perform such acts which require identification with a cause to defend. Hence the formulation of groups which can be pitted against each other (tribes, religion, nationalism), is a direct result of our fear of death. Ironically, courageous acts often involve facing, risking or succumbing to death, the very thing we fear the most. The more obsessed we are with the fear, the more the need for heroism. His book endeavors then to
"...understand what seems like an impossible paradox: the ever present fear of death in
the normal biological functioning of our instinct of self-preservation, as well as our utter
obliviousness to this fear in our conscious life." (17)
Whereas animals are constantly aware of their mortality which causes them to pay attention to instincts that warn of impending danger, man spends energy repressing thoughts of his mortality.
Becker suggests that instead of hiding our fear of death by causing wars, we "practice" death by acquiring wisdom. Once we fully accept the terror of death, we stop trying to defeat it by heroic acts which eliminates the need to defend groups and allows us to join a global community without war.
This is a quick synopsis of a very deep book, much of which I don't accept however, Becker's exploration into man's mass denial of his/her mortality was informative. I've always wondered at people who have never thought much about death or religion. I can't think of a more important question. I can accept someone not believing in God if they have come to that conclusion after at least considering the question. Since it is impossible to know what happens after death or whether or not there is a God, I accept and respect whatever beliefs or non-beliefs others hold. I just have trouble understanding people who are not interested in the questions. While unknowable, man's consciousness and life-long apprehension about death, lead most people to come to terms with some idea or belief if only to aid in the group agreement to deny man's mortality.
As a culture, we are bombarded by death, to the point of reducing it to nothing more than the expected scenes of mass annihilation that accompany even Disney movies today. As a high school counselor, I've followed the research on violence in movies and video games and its effects on adolescents. It seems we spend our lives pretending our own mortality doesn't exist while numbing our senses to the importance and finality of a constant diet of death.
We fight death with thoughts of immortality through any number of religious and cultural beliefs. Even the non-religious incorporate colloquialisms of culture that refer to immortality. As a species, we have managed to get almost every member of that species to agree to act as if none of us are going to die. Since it is such a widespread phenomenon, what does it do for us?
A common Facebook meme tells us to live each day as if it were our last. If we did, we would not go to work, buy groceries, pay bills, save money, plan for retirement or anything that would be directed towards a pay-off in the future. Obviously, we must live our lives as if we are going to live an average lifespan. However, I will admit that if I had it to do all over again, I would have listened to my body more closely and left toxic situations earlier. I would have put less time into work and more time into people. I would have spent less money, saved more and learned to live on less.
Cancer has caused me to be too run down to work or do much of anything. I miss having the energy to do what I want to do. If I had enough energy, I would spend more time with my family. If I couldn't go back to work, I would find some worthwhile work to do on a volunteer basis. I would want every minute to count regardless of how much time I have left. This is what Becker suggests we strive for i.e. a meaningful way to live our lives with the full knowledge and acceptance of our mortality, indeed perhaps because of it.
"...understand what seems like an impossible paradox: the ever present fear of death in
the normal biological functioning of our instinct of self-preservation, as well as our utter
obliviousness to this fear in our conscious life." (17)
Whereas animals are constantly aware of their mortality which causes them to pay attention to instincts that warn of impending danger, man spends energy repressing thoughts of his mortality.
Becker suggests that instead of hiding our fear of death by causing wars, we "practice" death by acquiring wisdom. Once we fully accept the terror of death, we stop trying to defeat it by heroic acts which eliminates the need to defend groups and allows us to join a global community without war.
This is a quick synopsis of a very deep book, much of which I don't accept however, Becker's exploration into man's mass denial of his/her mortality was informative. I've always wondered at people who have never thought much about death or religion. I can't think of a more important question. I can accept someone not believing in God if they have come to that conclusion after at least considering the question. Since it is impossible to know what happens after death or whether or not there is a God, I accept and respect whatever beliefs or non-beliefs others hold. I just have trouble understanding people who are not interested in the questions. While unknowable, man's consciousness and life-long apprehension about death, lead most people to come to terms with some idea or belief if only to aid in the group agreement to deny man's mortality.
As a culture, we are bombarded by death, to the point of reducing it to nothing more than the expected scenes of mass annihilation that accompany even Disney movies today. As a high school counselor, I've followed the research on violence in movies and video games and its effects on adolescents. It seems we spend our lives pretending our own mortality doesn't exist while numbing our senses to the importance and finality of a constant diet of death.
We fight death with thoughts of immortality through any number of religious and cultural beliefs. Even the non-religious incorporate colloquialisms of culture that refer to immortality. As a species, we have managed to get almost every member of that species to agree to act as if none of us are going to die. Since it is such a widespread phenomenon, what does it do for us?
A common Facebook meme tells us to live each day as if it were our last. If we did, we would not go to work, buy groceries, pay bills, save money, plan for retirement or anything that would be directed towards a pay-off in the future. Obviously, we must live our lives as if we are going to live an average lifespan. However, I will admit that if I had it to do all over again, I would have listened to my body more closely and left toxic situations earlier. I would have put less time into work and more time into people. I would have spent less money, saved more and learned to live on less.
Cancer has caused me to be too run down to work or do much of anything. I miss having the energy to do what I want to do. If I had enough energy, I would spend more time with my family. If I couldn't go back to work, I would find some worthwhile work to do on a volunteer basis. I would want every minute to count regardless of how much time I have left. This is what Becker suggests we strive for i.e. a meaningful way to live our lives with the full knowledge and acceptance of our mortality, indeed perhaps because of it.
Tuesday, May 19, 2015
Control, Time and Hope
Control, Time and Hope
Cancer has a way of leading you down a path where being poked, probed, stuck, examined, tested, and stripped of privacy is normal. When you purposely set about to poison yourself in order to kill something living inside of your body, "normal" takes on a meaning of its own. However, other than "chemo brain" the disease hasn't affected my mind and losing control over that would be far worse than a disease that takes my body first.
There are so many other diseases that are far worse than cancer that I feel guilty chronicling in this blog. I'm in no pain and chemotherapy is a viable treatment for a long time. Research is being done all the time and there are clinical trials for which I might qualify. While I have no idea how or when this will all end, there is still a great amount of hope in me. The inevitability of what will happen to me is still nebulous whereas a diagnosis of dementia or Alzheimer's almost always involves losing mental faculties before physical faculties.
I just read a memoir of a woman diagnosed with Alzheimer's who was determined to take her own life before she could no longer make the decision to do so. I couldn't take my own life which would add helplessness to hopelessness to total lack of control. While I wouldn't be opposed to someone else causing my death if I were mentally incapacitated or in a lot of pain, I'm just too Catholic to do it myself.
Losing hope is a strange phrase. We don't lose hope of living forever, we all know we are going to die sometime. We just lose hope of being able to pretend that death doesn't exist in our near future. It's a matter of time. We like to pretend we will live forever and therefore avoid dealing with our mortality. The hope that death won't happen for a long time diminishes with terminal illness but never really goes away. We hope for more time, we hope for a cure, we hope for a miracle, we hope for insight to make sense of the absurd.
Hope is the vehicle that ties control and time together.
May 19, 2015
Lori Patton
Cancer has a way of leading you down a path where being poked, probed, stuck, examined, tested, and stripped of privacy is normal. When you purposely set about to poison yourself in order to kill something living inside of your body, "normal" takes on a meaning of its own. However, other than "chemo brain" the disease hasn't affected my mind and losing control over that would be far worse than a disease that takes my body first.
There are so many other diseases that are far worse than cancer that I feel guilty chronicling in this blog. I'm in no pain and chemotherapy is a viable treatment for a long time. Research is being done all the time and there are clinical trials for which I might qualify. While I have no idea how or when this will all end, there is still a great amount of hope in me. The inevitability of what will happen to me is still nebulous whereas a diagnosis of dementia or Alzheimer's almost always involves losing mental faculties before physical faculties.
I just read a memoir of a woman diagnosed with Alzheimer's who was determined to take her own life before she could no longer make the decision to do so. I couldn't take my own life which would add helplessness to hopelessness to total lack of control. While I wouldn't be opposed to someone else causing my death if I were mentally incapacitated or in a lot of pain, I'm just too Catholic to do it myself.
Losing hope is a strange phrase. We don't lose hope of living forever, we all know we are going to die sometime. We just lose hope of being able to pretend that death doesn't exist in our near future. It's a matter of time. We like to pretend we will live forever and therefore avoid dealing with our mortality. The hope that death won't happen for a long time diminishes with terminal illness but never really goes away. We hope for more time, we hope for a cure, we hope for a miracle, we hope for insight to make sense of the absurd.
Hope is the vehicle that ties control and time together.
May 19, 2015
Lori Patton
Friday, May 15, 2015
Chemotherapy
Chemotherapy - the process of pumping poison into your body so that the greedy cancer cells who desperately need energy to keep dividing at such a quick rate, will devour it and die. One of my first oncologists told me that it was his job to know how much poison he could put in me without killing me while giving me enough to kill the cancer.
It is much easier to take chemo if you have a port surgically inserted just below your skin on your upper chest which utilizes direct access to a larger vein as opposed to trying to insert an IV for each treatment. I have to have blood work done before each chemo treatment which means I've been stuck so many times my veins have collapsed and every week I dread drawing blood more that I do accessing my port (which hurts no matter how they try to deaden it).
In an effort to offset the dehumanizing idea of poisoning oneself, the "infusion room" sports large, comfortable recliners, free coffee and snacks and on Wednesdays, one of the volunteers brings in her service dog, Bailey. Petting a dog makes everything better, as do Debby's lemon bars. My husband John comes with me to every treatment even though most of the time I fall asleep while he is doomed to watch "The Price is Right," and "Let's Make a Deal." He never complains.
There has been a huge advancement in drugs to prevent nausea. In fact, the side effects I most dread are of the shots you get after the treatments and the steroids which help you tolerate the poison. The shots make your bones ache as they try to stimulate blood cell production in the marrow and the steroids really mess up your blood sugar and make it hard to sleep. However, when the steroids wear off, all you want to do is sleep as your body tries to fight the effects of the poison on every other organ in your body. I'm really only sick for a couple of days however. By the 4th day after chemo, I start to feel normal again.
There are other complications with chemo however. I've been hospitalized twice for runaway infections. Any little bug can put you into the emergency room when you have no immunity to fight it. The first time I was ever really afraid I might die was when my temperature just keep rising regardless of the amount of antibiotics they were pumping through my body. If my husband hadn't insisted we go to the hospital when we did, we may not have been able to get my temp down in time.
A third hospitalization was for a pulmonary embullism or blood clots in my lungs. Cancer makes the blood coagulate easier and so blood clots in my legs formed which moved up to my lungs making it extremely difficult to breathe and forcing my heart to pump like crazy to try to get the blood past the clots for oxygenation. I could barely move without breathing so heavily I had to stop and sit. I was put on anti-coagulants and a little filter was put into my groin through a vein in my leg that is supposed to catch any more blood clots that decide to visit my lungs. The body dissolves the clots already formed in a few weeks time so after 4 days in the hospital, it took about a month to start to feel normal again. Apparently this is pretty common but it scared the heck out of me.
My biggest nemesis by far however is chemo brain. Trust me, it is real. It amplifies the memory problems that accompany aging tenfold. I have no short-term memory. It is much harder for me to learn new things. I wonder if I could ever go back to work as I don't remember how to use the software. I've noticed that since my first experience with chemo 3 years ago that the brain function doesn't come back. I hate feeling so stupid and spending half my life looking for things I've lost. Everyday tasks like paying bills is difficult. I used to teach graduate level courses and be in charge of guidance departments for large schools. The one thing I could count on was my brain and it has been definitely compromised by the chemo.
Most cancers can now be treated with much more specific drugs that don't necessarily poison the whole body but triple negative breast cancer is a very aggressive, fast growing cancer that takes pulling out all the big guns to try to arrest its growth. I am hoping that after chemo, the surgeon at Moffitt Cancer Center in Tampa will remove my left breast again. After it was removed originally, some breast tissue was left for reconstruction and that is where the cancer returned. Since we know the cancer metastasized to a lymph node in the abdomen, we know it has traveled through my body and will likely show up somewhere else as soon as the chemo is stopped. Consequently, the surgeon doesn't want to put me through surgery knowing that the chances of having gotten all the cancer with chemo, eliminating the tissue it will probably reoccur in, and then zapping everything with radiation will not result in a cure. I'm still willing to give it a shot. I have another 8 weeks of chemo before my oncologist and I try to talk him into doing the surgery. Remember what I said about denial never really going away?
It is much easier to take chemo if you have a port surgically inserted just below your skin on your upper chest which utilizes direct access to a larger vein as opposed to trying to insert an IV for each treatment. I have to have blood work done before each chemo treatment which means I've been stuck so many times my veins have collapsed and every week I dread drawing blood more that I do accessing my port (which hurts no matter how they try to deaden it).
In an effort to offset the dehumanizing idea of poisoning oneself, the "infusion room" sports large, comfortable recliners, free coffee and snacks and on Wednesdays, one of the volunteers brings in her service dog, Bailey. Petting a dog makes everything better, as do Debby's lemon bars. My husband John comes with me to every treatment even though most of the time I fall asleep while he is doomed to watch "The Price is Right," and "Let's Make a Deal." He never complains.
There has been a huge advancement in drugs to prevent nausea. In fact, the side effects I most dread are of the shots you get after the treatments and the steroids which help you tolerate the poison. The shots make your bones ache as they try to stimulate blood cell production in the marrow and the steroids really mess up your blood sugar and make it hard to sleep. However, when the steroids wear off, all you want to do is sleep as your body tries to fight the effects of the poison on every other organ in your body. I'm really only sick for a couple of days however. By the 4th day after chemo, I start to feel normal again.
There are other complications with chemo however. I've been hospitalized twice for runaway infections. Any little bug can put you into the emergency room when you have no immunity to fight it. The first time I was ever really afraid I might die was when my temperature just keep rising regardless of the amount of antibiotics they were pumping through my body. If my husband hadn't insisted we go to the hospital when we did, we may not have been able to get my temp down in time.
A third hospitalization was for a pulmonary embullism or blood clots in my lungs. Cancer makes the blood coagulate easier and so blood clots in my legs formed which moved up to my lungs making it extremely difficult to breathe and forcing my heart to pump like crazy to try to get the blood past the clots for oxygenation. I could barely move without breathing so heavily I had to stop and sit. I was put on anti-coagulants and a little filter was put into my groin through a vein in my leg that is supposed to catch any more blood clots that decide to visit my lungs. The body dissolves the clots already formed in a few weeks time so after 4 days in the hospital, it took about a month to start to feel normal again. Apparently this is pretty common but it scared the heck out of me.
My biggest nemesis by far however is chemo brain. Trust me, it is real. It amplifies the memory problems that accompany aging tenfold. I have no short-term memory. It is much harder for me to learn new things. I wonder if I could ever go back to work as I don't remember how to use the software. I've noticed that since my first experience with chemo 3 years ago that the brain function doesn't come back. I hate feeling so stupid and spending half my life looking for things I've lost. Everyday tasks like paying bills is difficult. I used to teach graduate level courses and be in charge of guidance departments for large schools. The one thing I could count on was my brain and it has been definitely compromised by the chemo.
Most cancers can now be treated with much more specific drugs that don't necessarily poison the whole body but triple negative breast cancer is a very aggressive, fast growing cancer that takes pulling out all the big guns to try to arrest its growth. I am hoping that after chemo, the surgeon at Moffitt Cancer Center in Tampa will remove my left breast again. After it was removed originally, some breast tissue was left for reconstruction and that is where the cancer returned. Since we know the cancer metastasized to a lymph node in the abdomen, we know it has traveled through my body and will likely show up somewhere else as soon as the chemo is stopped. Consequently, the surgeon doesn't want to put me through surgery knowing that the chances of having gotten all the cancer with chemo, eliminating the tissue it will probably reoccur in, and then zapping everything with radiation will not result in a cure. I'm still willing to give it a shot. I have another 8 weeks of chemo before my oncologist and I try to talk him into doing the surgery. Remember what I said about denial never really going away?
Thursday, May 14, 2015
Blogging the Journey
I 'm not sure how much longer I have to live but I do know that it will probably be somewhere between 2 and 6 years. I'm 60 years old and have Stage IV breast cancer. My parents are both 85. I used to be thankful that I had their longevity genes. I no longer plan on living another 25 or more years which severely changes just about everything in my life. I am no longer working due to the effects of the chemotherapy. I have been awarded a permanent disability from social security and every time I submit paperwork for insurance companies my doctor writes that I will be on chemo for the rest of my life. However, she has treated the cancer aggressively and even though it metastasized to a lymph node in my abdomen, the chemo seems to have eradicated any presence of cancer in that area. With surgery after chemo and radiation after that, there is the slightest of chances we could get it all. However, we are both realistic enough to know that I will probably spend the rest of my life knocking it down every time it reappears until the chemo is either no longer effective or the collateral damage of poisoning everything else in my body on a regular basis causes other organs to fail.
How do I deal with it? What are my alternatives? My family and friends all say I am strong and brave and have an amazing attitude. I don't know why. I go to chemo, I sleep when I'm sick, I take the meds and try to be as upbeat a person as I have always been. We live our entire lives in denial of death. That's a hard habit to change. I've done all the expected stuff - the will, the living will, power of attorney, finances in order, house in order, bought a boat, etc. which helps settle part of the mind. It also moves you and your family a little closer to acceptance but the feeling doesn't last long.
I don't look like I have a terminal disease except for being bald which people get used to. Half the time I forget about it and leave the house without my wig or a hat. You'd be amazed at the service you get when you go somewhere bald (as a woman anyway). My husband has a hard time leaving my side but he says he expects me to conquer the cancer and live a long life with him. My 26 year old son believes the same thing and got really upset with me when I ordered several books on death and the dying process. He's afraid that exploring how others deal with mortality might screw up my attitude.
We have all heard of the 5 stages: denial, anger, bargaining, depression and acceptance. These are not rigid nor are they necessarily chronological. Lenny Bruce did a great comedy sketch on these stages once. I can vouch for the fact that tears can come up at the oddest times and denial never really goes away. Anger and bargaining require someone to be angry at and bargain with. While I believe in God, I was raised Catholic and my God is a God of guilt and retribution meaning anything I got, I deserved, there is no changing His mind. While I am no longer and haven't been a practicing Catholic in a long time, I feel that if God were willing to bargain, He wouldn't have given me the cancer in the first place. I have a fatalistic relationship with God that just doesn't let anger or bargaining in the picture. I've prayed to be able to handle what He gives me not be spared from it.
My life has been a lot of hard work and stress. I wouldn't want to go through it again. When dealing with cancer seems like a break, something is really wrong with your life. However, I do thank God often for my many, many blessings, especially my kids. I have wonderful parents and was blessed with an extraordinary extended family. I have been given experiences beyond compare in education and travel, jobs, homes and especially being able to spend time with my kids. I was just taught that my many blessings were underserved gifts and my trials were a result of sin and therefore my fault.
I see my whole life as already known to God and I see me as a result of everything that has happened to me in my life. Therefore, whoever I am at the time of my death is a compilation of how I incorporated all God gave me to handle throughout my life. If He were in control of all I encountered, then He must have known which experiences I needed to go through to be what He wanted me to be at the end of my life. My hope is that I don't disappoint.
Obviously, this will be a very personal log and much of what applies to me will not apply to you. A friend of my died of breast cancer a few years ago and because of my school schedule, I was able to spend a lot of time with her just before she died. I think we expect people who are close to dying to possess a special kind of wisdom about death and dying. I didn't want to press her but I was really curious about how she was dealing with it all. She was a devout Christian and that faith in seeing Jesus and her husband was a tangible factor in how she faced death. She also described it as very emotional too however, as she would be leaving her children, other family, church friends, home and everything she has ever known. I was there the night she announced she only had 6 months to live and the time just seemed to fly by. Here it was 6 months later and she was facing the inevitable. How long does it take to really prepare for death? I think she did the best she could. She was very brave. she told another friend of mine that she enjoyed spending time with her because she didn't ask a lot of questions. Point taken! I should have just played cards with her and watched her favorite shows with her. Maybe she wanted a break from thinking about it. Perhaps hope takes on the face of denial or escape toward the end. Toni and I are very different in some respects however and so how we deal (dealt) with a terminal disease would be different too.
I am in the process of reviewing the literature on death ad dying in order to learn as much as I can from others who have attempted to do what I'm doing. It doesn't seem depressing or macabre to me right now - perhaps because death itself still seems a while away. I want to know how others deal with the fear and sadness of leaving, how the disease itself affects the body and mind and the medical processes of fighting this disease. I look forward to hearing from others who have insights to share.
How do I deal with it? What are my alternatives? My family and friends all say I am strong and brave and have an amazing attitude. I don't know why. I go to chemo, I sleep when I'm sick, I take the meds and try to be as upbeat a person as I have always been. We live our entire lives in denial of death. That's a hard habit to change. I've done all the expected stuff - the will, the living will, power of attorney, finances in order, house in order, bought a boat, etc. which helps settle part of the mind. It also moves you and your family a little closer to acceptance but the feeling doesn't last long.
I don't look like I have a terminal disease except for being bald which people get used to. Half the time I forget about it and leave the house without my wig or a hat. You'd be amazed at the service you get when you go somewhere bald (as a woman anyway). My husband has a hard time leaving my side but he says he expects me to conquer the cancer and live a long life with him. My 26 year old son believes the same thing and got really upset with me when I ordered several books on death and the dying process. He's afraid that exploring how others deal with mortality might screw up my attitude.
We have all heard of the 5 stages: denial, anger, bargaining, depression and acceptance. These are not rigid nor are they necessarily chronological. Lenny Bruce did a great comedy sketch on these stages once. I can vouch for the fact that tears can come up at the oddest times and denial never really goes away. Anger and bargaining require someone to be angry at and bargain with. While I believe in God, I was raised Catholic and my God is a God of guilt and retribution meaning anything I got, I deserved, there is no changing His mind. While I am no longer and haven't been a practicing Catholic in a long time, I feel that if God were willing to bargain, He wouldn't have given me the cancer in the first place. I have a fatalistic relationship with God that just doesn't let anger or bargaining in the picture. I've prayed to be able to handle what He gives me not be spared from it.
My life has been a lot of hard work and stress. I wouldn't want to go through it again. When dealing with cancer seems like a break, something is really wrong with your life. However, I do thank God often for my many, many blessings, especially my kids. I have wonderful parents and was blessed with an extraordinary extended family. I have been given experiences beyond compare in education and travel, jobs, homes and especially being able to spend time with my kids. I was just taught that my many blessings were underserved gifts and my trials were a result of sin and therefore my fault.
I see my whole life as already known to God and I see me as a result of everything that has happened to me in my life. Therefore, whoever I am at the time of my death is a compilation of how I incorporated all God gave me to handle throughout my life. If He were in control of all I encountered, then He must have known which experiences I needed to go through to be what He wanted me to be at the end of my life. My hope is that I don't disappoint.
Obviously, this will be a very personal log and much of what applies to me will not apply to you. A friend of my died of breast cancer a few years ago and because of my school schedule, I was able to spend a lot of time with her just before she died. I think we expect people who are close to dying to possess a special kind of wisdom about death and dying. I didn't want to press her but I was really curious about how she was dealing with it all. She was a devout Christian and that faith in seeing Jesus and her husband was a tangible factor in how she faced death. She also described it as very emotional too however, as she would be leaving her children, other family, church friends, home and everything she has ever known. I was there the night she announced she only had 6 months to live and the time just seemed to fly by. Here it was 6 months later and she was facing the inevitable. How long does it take to really prepare for death? I think she did the best she could. She was very brave. she told another friend of mine that she enjoyed spending time with her because she didn't ask a lot of questions. Point taken! I should have just played cards with her and watched her favorite shows with her. Maybe she wanted a break from thinking about it. Perhaps hope takes on the face of denial or escape toward the end. Toni and I are very different in some respects however and so how we deal (dealt) with a terminal disease would be different too.
I am in the process of reviewing the literature on death ad dying in order to learn as much as I can from others who have attempted to do what I'm doing. It doesn't seem depressing or macabre to me right now - perhaps because death itself still seems a while away. I want to know how others deal with the fear and sadness of leaving, how the disease itself affects the body and mind and the medical processes of fighting this disease. I look forward to hearing from others who have insights to share.
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