"Self-love, my liege, is not so vile a sin
As self-neglecting." William Shakespeare
Ernie just completed a five week regimen of radiation. Every day we drove for almost an hour to the medical center where he received his treatment. When the radiation oncologist initially explained that after this round of treatments there would be a one month break before any further treatments took place, in typical fashion, Ernie put it in his own terms. "What you're saying is just like microwave cooking. After I'm through, I'll continue to bake for another month before I'm finished." So, according to Ernie, he is now 'continuing to bake'.
Until these treatments ended, I had no idea how much energy - emotional and physical - had been both needed and expended. Once a week during the treatments, we met with the radiation oncologist, so he could monitor the progress. After the one month break, Ernie will undergo a cat scan, so an accurate picture of progress can be measured.
On Monday, he received his last treatment and rang the brass bell in the lobby so everyone would hear that he had finished another milestone in his journey. Applause followed. Our daughter took his picture and treated us to lunch afterwards to celebrate.
Then exhaustion broke through and brought me to my knees. I suppose like holding my breath under water, I just couldn't do it anymore and I crashed. I have slept and slept and slept since early this week. Emotions have spilled over and out, sometimes inappropriately. I have had to admit that I am human and fragile and not superwoman, something that is hard to accept - again. Yet, reminded of my own humanity, I can learn from this experience and share it with you.
Taking care of yourself as caregiver on a daily basis is the most critically important thing you can do. Holding on, holding back, striving to be a super person until the dam breaks is the type of self-neglecting that Shakespeare refers to in the quote. I plan to begin my day by looking over the things I have designated that need to be accomplished and then prioritize instead of trying to do it all every day. I know this won't be easy for me initially, but I am convinced that if I make this start, I will be able to exhale just a little every day instead of allowing things to build up until I reach a point of complete exhaustion.
I am a list maker and from now on, the word 'rest' will be an item on my list, whether that means just a block of time when I sit, pause and reflect or a nap. Until it becomes second nature to me, I will write at the top of my daily list the words "remember to ask for help". That 'help' could be as simple as calling a friend and just asking that friend to listen or it might entail asking someone to pick up a few things at the grocery store for you if you are unable to leave your loved one that day. People who care want to help, but they need us to direct them by letting them know HOW they can be of help.
Soon I will go back to work. I am fortunate to work part time and have the ability to schedule my own hours; however, if Ernie's radiation treatment becomes an ongoing activity, I will need to call on friends and neighbors occasionally to drive him to treatment. Many people have offered to do just that and what a blessing that is!
We, as caregivers, are the organizers of our own time and activities. The demands placed on us are many, but we cannot do everything without paying a price emotionally and physically. Taking care of ourselves allows us to thrive and not merely survive and what better gift can we give the loved one who needs us.
Thursday, July 26, 2012
Saturday, July 21, 2012
OUR LOVED ONE REMAINS THE SAME
"In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. " Albert Schweitzer
Deepak Chopra
I believe we are all spirits wrapped in skin, but I also believe that cancer, like an amoral thief, steals from our loved ones until visible signs become hard to ignore. Cancer steals strength. Ernie said the other day that he regretted that he was unable to do certain things he used to be able to do because he now lacks the strength. However, he has no lack of mental strength or determination. That he has demonstrated over and over during this long journey.
Cancer has stolen energy and stamina. Most afternoons he takes a nap (and I often join him) and the naps rejuvenate, so there is a solution to the energy dilemma. Cancer has caused weight loss over time, but with a careful attention to diet, he is able to monitor and maintain weight: another solution.
This journey is one of incredible highs and gut wrenching lows, but although cancer attempts to steal joy when times are low, Ernie resists through humor, teaching the rest of us how life's battles can be won. Cancer can isolate its victims and caregivers as well, yet true friends have continued to include us in activities to keep our world from becoming too limited.
I would be lying if I said this is easy. Life has changed for him. Life has changed for me. Adjustments have had to be made and continue to be made to accommodate each change. But if I remember that he is the same spirit wrapped in skin I have always loved and will always love, whatever lies ahead is possible to endure.
Whether our loved one is mother, father, daughter, son, child, husband, wife or friend, Josh Grobin's song "You're Still You" says it better than I ever could.
Thursday, July 19, 2012
BACK TO THE BLIND MEN AND THE ELEPHANT
.
As a caregiver, education and query are two of the most important tools I possess. Living in an age where information is instantly available, the better informed I am about Ernie's particular cancer, the better able I am and will continue to be able to ask the right questions. As the patient, Ernie has learned to read his own numbers when he reads a copy of his blood work. He knows what his numbers should be from his INR numbers, which indicate his blood clotting factors since he takes a blood thinner to his kidney function numbers. He is capable of reviewing his numbers, so he can ask intelligent questions during doctors' visits. Just as Ernie has become a student of his own care, I have also researched and studied information, so I can determine additional questions.
One particular instance comes to mind that occurred during one of his hospital stays. Two bags were hanging on the IV stand. Ernie asked the nurse about the content of the bags. She informed him that one bag contained saline solution to help hydrate him and the other a diuretic. Because he knew that diuretics were used to remove fluid from the body, he questioned why he was receiving one bag to infuse fluid and another to remove it. The doctor was consulted and the diuretic was immediately removed. We often wonder how long it would have taken the physician to identify the situation.
The professionals in the health care industry from the doctors to the nurses are all working for the common good of patients; however, these people are human beings and capable of errors. Each body system is different and the patient knows his body better than anyone else. As caregiver, it is my job to listen to Ernie and assist in relaying that information to his doctors when he either isn't feeling well or in some cases when he is very sick, unable to communicate that information himself. I am the constant in his life - the person who is with him most of the time. The health professionals only see him for brief periods of time. Constant vigilance becomes necessary to insure quality overall care.
I have taken the liberty of inserting the parable I referenced in an earlier blog "The Blind Man and the Elephant" to punctuate the concept that when many people are involved in the care of one person, each one has a very distinct perspective and may not necessarily see the whole picture.
One particular instance comes to mind that occurred during one of his hospital stays. Two bags were hanging on the IV stand. Ernie asked the nurse about the content of the bags. She informed him that one bag contained saline solution to help hydrate him and the other a diuretic. Because he knew that diuretics were used to remove fluid from the body, he questioned why he was receiving one bag to infuse fluid and another to remove it. The doctor was consulted and the diuretic was immediately removed. We often wonder how long it would have taken the physician to identify the situation.
The professionals in the health care industry from the doctors to the nurses are all working for the common good of patients; however, these people are human beings and capable of errors. Each body system is different and the patient knows his body better than anyone else. As caregiver, it is my job to listen to Ernie and assist in relaying that information to his doctors when he either isn't feeling well or in some cases when he is very sick, unable to communicate that information himself. I am the constant in his life - the person who is with him most of the time. The health professionals only see him for brief periods of time. Constant vigilance becomes necessary to insure quality overall care.
I have taken the liberty of inserting the parable I referenced in an earlier blog "The Blind Man and the Elephant" to punctuate the concept that when many people are involved in the care of one person, each one has a very distinct perspective and may not necessarily see the whole picture.
"ELEPHANT
AND THE BLIND MEN
Once upon a time, there lived six blind men in a village. One
day the villagers told them, "Hey, there is an elephant in
the village today." They had no idea what an elephant is. They decided, "Even though we would not be able to see it, let us go and feel it anyway." All of them went where the elephant was. Everyone of them touched the elephant.
"Hey, the elephant is a pillar," said the first man who touched his leg.
"Oh, no! it is like a rope," said the second man who touched the tail.
"Oh, no! it is like a thick branch of a tree," said the third man who touched the trunk of the elephant.
"It is like a big hand fan" said the fourth man who touched the ear of the elephant.
"It is like a huge wall," said the fifth man who touched the belly of the elephant.
"It is like a solid pipe," Said the sixth man who touched the tusk of the elephant.
They began to argue about the elephant and everyone of them insisted that he was right. It looked like they were getting agitated. A wise man was passing by and he saw this. He stopped and asked them, "What is the matter?" They said, "We cannot agree to what the elephant is like." Each one of them told what he thought the elephant was like. The wise man calmly explained to them, "All of you are right. The reason every one of you is telling it differently because each one of you touched the different part of the elephant. So, actually the elephant has all those features what you all said."
"Oh!" everyone said. There was no more fight. They felt happy that they were all right.
The moral of the story is that there may be some truth to what someone says. Sometimes we can see that truth and sometimes not because they may have different perspective which we may not agree too. So, rather than arguing like the blind men, we should say, "Maybe you have your reasons." This way we don’t get in arguments."
Wednesday, July 18, 2012
THE BIGGEST ELEPHANT IN THE ROOM
"We already live a very long time for mammals, getting
three times as many heartbeats as a mouse or elephant. It never seems
enough though, does it?"
David Brin
Since Ernie's diagnosis, forcing myself to look at Ernie's mortality as well as my own has not been easy. My earliest recollections of my fear of death came from the first prayer I remember memorizing and saying repeatedly at night at a very young age. "Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take." What a scary prayer for little child! In my young mind, death appeared to be something that would come and get me in the night like the bogey man, so I just didn't think about it at all: my very first experience with denial. Had I grown up on a farm around animals and watched the life cycle unfold naturally rather than in the city, I might have viewed death differently.
A huge disparity existed inside me between my perception of death and the reality of death, so faced with Ernie's initial diagnosis, I took time working through the understanding of this natural process until I could distinguish fact from fiction in my own mind. Now when Ernie refers his own death he references it as ''taking a trip'' and I know and understand his meaning. He will say "when I go on my trip" or "after I go on my trip" when he shares specific instructions with me.
Several years ago at his suggestion I bought a spiral notebook and began taking notes about insurance policies, people who need to be contacted, banking information, account numbers of policies and even quarterly bills that arrive. In other words, a notebook full of information I will need when many responsibilities become solely my own. We have had several ''meetings'' in his office to discuss changes as they occur since his initial diagnosis. This is one way he maintains his role as my constant teacher.
The irony behind all of our planning lies in the fact that not one of us can know what tomorrow may bring. He may leave this earth before I do. He may not. But in the meantime, we will live in this day and enjoy the journey.
Since Ernie's diagnosis, forcing myself to look at Ernie's mortality as well as my own has not been easy. My earliest recollections of my fear of death came from the first prayer I remember memorizing and saying repeatedly at night at a very young age. "Now I lay me down to sleep. I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take." What a scary prayer for little child! In my young mind, death appeared to be something that would come and get me in the night like the bogey man, so I just didn't think about it at all: my very first experience with denial. Had I grown up on a farm around animals and watched the life cycle unfold naturally rather than in the city, I might have viewed death differently.
A huge disparity existed inside me between my perception of death and the reality of death, so faced with Ernie's initial diagnosis, I took time working through the understanding of this natural process until I could distinguish fact from fiction in my own mind. Now when Ernie refers his own death he references it as ''taking a trip'' and I know and understand his meaning. He will say "when I go on my trip" or "after I go on my trip" when he shares specific instructions with me.
Several years ago at his suggestion I bought a spiral notebook and began taking notes about insurance policies, people who need to be contacted, banking information, account numbers of policies and even quarterly bills that arrive. In other words, a notebook full of information I will need when many responsibilities become solely my own. We have had several ''meetings'' in his office to discuss changes as they occur since his initial diagnosis. This is one way he maintains his role as my constant teacher.
The irony behind all of our planning lies in the fact that not one of us can know what tomorrow may bring. He may leave this earth before I do. He may not. But in the meantime, we will live in this day and enjoy the journey.
Monday, July 16, 2012
EXPECT THE UNEXPECTED
"A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life." William Arthur Ward
"Humor can alter any situation and help us cope at the very instant we are laughing."
Allen Klein
What began as a relatively normal evening Saturday night erupted into something different entirely. Ernie walked into the kitchen to get some jello I had made and removed the bowl from the refrigerator. I was on the couch in front of the television and the next thing I heard was a loud crash and Ernie hollering. He had either tripped or lost his balance, but he was on the floor, pieces of broken dish and globs of jello all around him. He cut his hand in the fall and since the jello was red, it was difficult to determine if the liquid on the top of his hand was jello or blood at first. We determined the cut wasn't deep or severe. After Ernie caught his breath, he told me he was alright and didn't think he had broken anything, but because he was flat on the floor, I was unable to pick him up, so I called one of our neighbors who came over immediately, but he was unable to lift him from the floor either, so I called 911 and an ambulance arrived with three technicians who are trained to handle instances like this. After a cursory exam, they lifted Ernie to his feet and onto a stool. One of the emergency medical attendants asked him if he had any physical problems to which he replied with a smile on his face "Where do you want me to start and how much time do you have?" Because his blood pressure was low, they wanted to take him to the hospital for observation, but since he had just been released from the hospital two days ago, he declined their offer and I understood as did they. Several hours later after I had swept up all the broken pieces of pottery and mopped up the jello, I felt gratitude wash over me, thankful that Ernie hadn't suffered any severe injuries or broken any bones.
Today, his ribs are sore, but other than that, his humor is still intact and all seems right with the world again. Had either of us guessed at what might have happened as the result of a simple act, we never could have guessed what did happen. This accident might have happened to anyone, but because Ernie is a cancer and heart patient, it took on additional dimensions.
It seems to me as he travels this journey that life just bumps into itself sometimes, causing difficulties upon difficulties and I can only imagine how frustrating it must be for him. His wonderful sense of humor just keeps those of us who are loving him and helping him laughing. Last night as the emergency workers were rolling the empty gurney out the back door, he asked them if they could turn the lights and siren on as they left the driveway just to give the neighbors a thrill. Even in the midst of crisis, he helps the rest of us find the humor.
Sunday, July 15, 2012
BUTCHER, BAKER AND CANDLESTICK MAKER ALL ROLLED UP INTO ONE
"The best way to find yourself is to lose yourself in the service of others." Mahatma Gandhi
I spent most of my career as a classroom teacher and often wondered if my students honestly believed I lived in my classroom and just popped up from behind my desk every morning based on their questions and expectations. Teachers assume the roles of educator, counselor, substitute parent and disciplinarian to name only a few. As caregiver, I find parallels to the same feelings I once had as a teacher with the variety of roles I play today. I am health care coordinator, dietitian, appointment coordinator, research analyst, nurse and primary support person. A dear friend recently said, "You will never be as important to anyone in your entire life as you are right now" and I believe she is right. Being a caregiver is an awesome responsibility and opportunity despite the multitude of roles associated with the job.
As health care coordinator, it is my job to keep up with doctors' appointments and to speak up during those appointments if Ernie isn't sharing the whole truth with them regarding his condition at the time even though it may be an unpopular stance to take. I understand physicians need as much information as they can gather to make decisions regarding my husband's treatment and care. It is my job to pay close attention to his nutrition and encourage him to eat foods that will serve his body well. We have had the privilege of working with a dietitian recently and have taken her suggestions in preparing the right foods.
I have learned that with the body system, when one thing is out of kilter, other things follow. I realize that this is not exactly an astute observation, only a logical one, but in the course of every day living, I usually don't contemplate the workings of the body system. I take it for granted and assume it will simply work as it is designed to work. With cancer patients, many medications can cause diarrhea. Diarrhea can cause dehydration and that condition can precipitate other conditions. For example, fluid intake is important to my husband's chemo pill regimen, but with fluid intake comes the necessity to urinate and since he suffers from numbness in his feet, getting up and down isn't always easy.
As caregiver, I need to constantly remind myself that the body system is complex and empathize with him as he endeavors to follow doctors' orders. Also, because I am overseeing his care and he has several specialists who seldom if ever communicate with one another, it is my responsibility to see the big picture and evaluate his care overall. Ernie has excellent physicians overseeing his care, but much like the theme of the ancient parable "The Blind Man and The Elephant", each specialist is seeing only his particular part and may not be considering his entire system.
As caregivers, our roles may be varied, but our purpose is the same: to help our loved one as he or she travels this path which, for some of you, may be a new journey and for others a continuing one. I will try to share with you from time to time various websites I have found that have excellent and very specific information for caregivers, so you will be informed and can make intelligent decisions. A recent website I discovered is: http://www.practicalcaregiverguides.com/cancer-caregiving-guide
I spent most of my career as a classroom teacher and often wondered if my students honestly believed I lived in my classroom and just popped up from behind my desk every morning based on their questions and expectations. Teachers assume the roles of educator, counselor, substitute parent and disciplinarian to name only a few. As caregiver, I find parallels to the same feelings I once had as a teacher with the variety of roles I play today. I am health care coordinator, dietitian, appointment coordinator, research analyst, nurse and primary support person. A dear friend recently said, "You will never be as important to anyone in your entire life as you are right now" and I believe she is right. Being a caregiver is an awesome responsibility and opportunity despite the multitude of roles associated with the job.
As health care coordinator, it is my job to keep up with doctors' appointments and to speak up during those appointments if Ernie isn't sharing the whole truth with them regarding his condition at the time even though it may be an unpopular stance to take. I understand physicians need as much information as they can gather to make decisions regarding my husband's treatment and care. It is my job to pay close attention to his nutrition and encourage him to eat foods that will serve his body well. We have had the privilege of working with a dietitian recently and have taken her suggestions in preparing the right foods.
I have learned that with the body system, when one thing is out of kilter, other things follow. I realize that this is not exactly an astute observation, only a logical one, but in the course of every day living, I usually don't contemplate the workings of the body system. I take it for granted and assume it will simply work as it is designed to work. With cancer patients, many medications can cause diarrhea. Diarrhea can cause dehydration and that condition can precipitate other conditions. For example, fluid intake is important to my husband's chemo pill regimen, but with fluid intake comes the necessity to urinate and since he suffers from numbness in his feet, getting up and down isn't always easy.
As caregiver, I need to constantly remind myself that the body system is complex and empathize with him as he endeavors to follow doctors' orders. Also, because I am overseeing his care and he has several specialists who seldom if ever communicate with one another, it is my responsibility to see the big picture and evaluate his care overall. Ernie has excellent physicians overseeing his care, but much like the theme of the ancient parable "The Blind Man and The Elephant", each specialist is seeing only his particular part and may not be considering his entire system.
As caregivers, our roles may be varied, but our purpose is the same: to help our loved one as he or she travels this path which, for some of you, may be a new journey and for others a continuing one. I will try to share with you from time to time various websites I have found that have excellent and very specific information for caregivers, so you will be informed and can make intelligent decisions. A recent website I discovered is: http://www.practicalcaregiverguides.com/cancer-caregiving-guide
Saturday, July 14, 2012
THINGS THAT GO BUMP IN THE NIGHT OR DAY
"Courage is resistance to fear, mastery of fear, not absence of fear.
" Mark Twain
"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." Eleanor Roosevelt
Since Ernie's cancer journey began almost five years ago, fear has been present to a lesser or greater degree, depending on the day or for me at least - the night. We have shared our fears with each other, but some fears remain unspoken.
During his recent stay in the hospital due to dehydration and infection, old familiar fears came crashing through again, and most of them revolved around the unknown. Since cancer patients have a compromised immune system, Ernie understands the danger of infection and has been effected by infections repeatedly, but this time the symptom was dehydration and it took a few days to discover infection as the underlying cause. I share this specific information to demonstrate how quickly fear can invade thought with thousands of 'what if' questions until what begins as a small fear becomes enormous and all pervasive.
During Ernie's illness, my mind often performs at warp speed after I go to bed at night. I have learned a few techniques to turn it off or at least dial it down, so I can relax and then sleep. I have a mantra I say over and over which actually are the beginning words of the serenity prayer. I say ''God, grant me the serenity to accept" and stop there. I repeat that mantra until I usually fall asleep. It is a good reminder to stay in acceptance mode no matter what the situation may be at that time. Another technique that usually works is deep breathing, inhaling to the count of 11 and exhaling to the count of 11, which forces the breathing to slow down.
Fear paralyzes and debilitates. All action and forward motion stop when I am afraid, so I cannot be of help to Ernie because I am so entangled by fearful thoughts. Knowing that fear is a part of this journey, if I can recognize times I am feeling the most fearful and work towards finding solutions to those fears by looking those fears squarely in the face, then today is brighter and hope has a chance to take precedence.
"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." Eleanor Roosevelt
Since Ernie's cancer journey began almost five years ago, fear has been present to a lesser or greater degree, depending on the day or for me at least - the night. We have shared our fears with each other, but some fears remain unspoken.
During his recent stay in the hospital due to dehydration and infection, old familiar fears came crashing through again, and most of them revolved around the unknown. Since cancer patients have a compromised immune system, Ernie understands the danger of infection and has been effected by infections repeatedly, but this time the symptom was dehydration and it took a few days to discover infection as the underlying cause. I share this specific information to demonstrate how quickly fear can invade thought with thousands of 'what if' questions until what begins as a small fear becomes enormous and all pervasive.
During Ernie's illness, my mind often performs at warp speed after I go to bed at night. I have learned a few techniques to turn it off or at least dial it down, so I can relax and then sleep. I have a mantra I say over and over which actually are the beginning words of the serenity prayer. I say ''God, grant me the serenity to accept" and stop there. I repeat that mantra until I usually fall asleep. It is a good reminder to stay in acceptance mode no matter what the situation may be at that time. Another technique that usually works is deep breathing, inhaling to the count of 11 and exhaling to the count of 11, which forces the breathing to slow down.
Fear paralyzes and debilitates. All action and forward motion stop when I am afraid, so I cannot be of help to Ernie because I am so entangled by fearful thoughts. Knowing that fear is a part of this journey, if I can recognize times I am feeling the most fearful and work towards finding solutions to those fears by looking those fears squarely in the face, then today is brighter and hope has a chance to take precedence.
Friday, July 13, 2012
"C" IS FOR CANCER
"Be like the bird that, passing on her flight awhile on boughs too slight, feels them give way beneath her, and yet sings, knowing that she hath wings." ~Victor Hugo
Cancer defined is uncontrolled growth of abnormal cells in the body and often just like snowfall in the night, it arrives silently and undetected until symptoms occur. A close friend who lived for years in Boulder, Colorado described snow as 'sneaky' and so is cancer.
The very word cancer for me and I suspect for others elicits enormous fear because of personal experiences with how cancer has stolen people I have loved and in sharing Ernie's initial diagnosis, often I endured listening to gruesome tales of suffering and death that well meaning friends felt compelled to share with me. "I had an uncle once who" or "my mother" or "my father" and on and on until I dreaded sharing the news at all. I'm certain not one person meant to dive to the depths of negativity. They were only reacting to the news by traveling immediately to their personal experiences with cancer - the big "C".
Cancer is a huge umbrella covering so many types and forms as these abnormal cells can invade any part of body, so comparing skin cancer to brain cancer is like comparing apples to oranges. I found the immediate missing link when I shared Ernie's diagnosis was hope. Yet, over the years I have not only experienced hope again and again, but I have seen specific evidence in cancer patients I have met.
Since we live in Houston, Ernie and I spent a day at MD Anderson Cancer center one day for blood work and a consultation. This cancer hospital, which is world renown, resembles a small city. Seated in a waiting room with at least a hundred other people that day, Ernie commented that we would be there for hours, but at exactly his appointed time, he was ushered in for the blood draw. Seated across from us while we were waiting was a beautiful young woman whose smile radiated and touched everyone. Her eyes, a striking deep blue, glittered above a wide smile. She wore no cap on her bald head. She just kept smiling and smiling. I will never forget her. Another cancer patient at the radiation center who has treatment before my husband bursts through the door every morning with such enthusiasm and joy it's contagious. She takes a seat at the puzzle table with others who are working on it and instantly engages them in a lively conversation. She wears no hat or cap and has no hair, but her joy infuses everyone in the room. The message that both of these women shouted without saying a word changed 'victim' to 'surviving human being'. I am convinced that hope is the common denominator. A neighbor of mine and a cancer survivor once said, "I am still me. I am not my disease".
My father once shared his observation after he was diagnosed. He said he noticed that many people quit touching him as if what he had was contagious. I made a point after that visit to kiss him on the lips or cheek every time I left him. What I learned from his experience was how threatening cancer can be to others because I believe it reminds them of their own mortality and really has little to do with the individual who has the cancer. I think there is also a similar connection with others who feel the need to share their grim stories of negativity when cancer is even mentioned. They are voicing their own fear of mortality and cloaking it in a story about losing a loved one. Today when someone begins to share another grim cancer story, I politely disengage as quickly as I can.
Experience has taught me and is teaching me to continually remember that this is Ernie's journey and it is uniquely his own and entirely different from any other journey past or present that anyone else is traveling. As caregiver, I marvel at his hopefulness and must admit I've caught it too. He is still my greatest teacher.
Thursday, July 12, 2012
CHANGE AND THE NEW NORMAL
The bamboo that bends is stronger than the oak that resists. ~Japanese Proverb
I have never given much thought to change. Like many things, I took change for granted as inevitable until it effected me personally. Years ago, I listened to a radio station program that was suddenly taken off the air for no apparent reason. When it disappeared, I wrote a scathing letter to the radio station that was picked up by a local television station as part of a story that aired on the news. Of course my letter did nothing to bring the program back any more than railing against the universe will cause my husband's cancer to disappear.
After Ernie's initial diagnosis, we both began to notice slight physical changes that could be attributed to the cancer and the chemo drug he was taking orally. He developed numbness in his feet and had mobility issues as a result. He bought a scooter and had a lift installed on the back of our Yukon. He tired more easily, so naps became important. As issues arose, he discovered solutions to remedy them. His ability to meet the challenges and changes that occurred taught me and continues to teach me to do the same.
With changes, we are learning to adjust to this 'new normal'. Life certainly is not as it once was and will never be as it was again, but the very act of being alive means change and if we bend with it, we will both be stronger.
Wednesday, July 11, 2012
PLANNING AHEAD: A POINT OF FRUSTRATION
"Life happens when you're busy making other plans." John Lennon
"The best laid plans of mice and men often go awry." John Steinbeck
I found it interesting that two of my favorite famous people both addressed the issue of planning. Growing up and well into adulthood, one of the nicknames that followed me was ''Patty Planner". I suppose I needed the security of knowing what was going to happen at some point in the future, never realizing how tenuous the act of planning can be in reality. Most times my plans became great expectations and when those expectations didn't occur just as I had them mapped out, I felt devastated by the results. Of course, it would be just as ridiculous not the plan at all and ad lib life totally, but planning ahead as I once did ranks alongside a grand production of the Theater of the Absurd.
It has now been several days since I first started this post and no truer words were ever written. Ernie experienced severe dehydration, his radiation therapy was halted for now and he is in the hospital with IV hydration. These were not the plans for this week, but they are now the plans for this week and so life continues.
As caregiver, I have just shifted and tweaked my reality to accommodate daily drives to the med center with hope that 'this too shall pass' as so many other episodes have over the past five years. The root cause has been determined as an infection, so there is a solution.
I have learned through experience to be prepared to accept changes on a daily basis if needs arise and not allow frustration and anger to enter into the day. If I remember to stay in the day and in the moment, when changes occur, I seem to be able to accept them more easily. At least that has been my experience.
"The best laid plans of mice and men often go awry." John Steinbeck
I found it interesting that two of my favorite famous people both addressed the issue of planning. Growing up and well into adulthood, one of the nicknames that followed me was ''Patty Planner". I suppose I needed the security of knowing what was going to happen at some point in the future, never realizing how tenuous the act of planning can be in reality. Most times my plans became great expectations and when those expectations didn't occur just as I had them mapped out, I felt devastated by the results. Of course, it would be just as ridiculous not the plan at all and ad lib life totally, but planning ahead as I once did ranks alongside a grand production of the Theater of the Absurd.
It has now been several days since I first started this post and no truer words were ever written. Ernie experienced severe dehydration, his radiation therapy was halted for now and he is in the hospital with IV hydration. These were not the plans for this week, but they are now the plans for this week and so life continues.
As caregiver, I have just shifted and tweaked my reality to accommodate daily drives to the med center with hope that 'this too shall pass' as so many other episodes have over the past five years. The root cause has been determined as an infection, so there is a solution.
I have learned through experience to be prepared to accept changes on a daily basis if needs arise and not allow frustration and anger to enter into the day. If I remember to stay in the day and in the moment, when changes occur, I seem to be able to accept them more easily. At least that has been my experience.
Sunday, July 8, 2012
THE PARTY CAREGIVERS SHOULD NOT ATTEND
Shortly after Ernie's cancer diagnosis, life took on different twists and turns as we were swept up into the realm of the medical community with a team of doctors including our general practitioner, a liver surgeon, an oncologist, a cardiologist and an infectious disease doctor. The problems we encountered reminded me of the poem "The Blind Man and The Elephant" as each doctor was well versed in his or her specialty yet none of them seemed to see the picture was a whole, only their particular part.
As days turned into weeks, my frustration grew until I believed that racing off to my own private pity party could be an option in dealing with those frustrations. How quickly I learned that no amount of self pity would benefit me in any way and certainly couldn't benefit Ernie. While I was stuck in the muck and the mire, he was fighting as hard as he could. Besides, it was a huge waste of energy on my part and I needed that energy to attend to him. So after that great epiphany, I removed me, myself and I from the pity party guest list and swore to avoid that gathering altogether.
I do believe it's important for a caregiver to remember that he/she is not sick and to continue healthy activities that will provide physical and spiritual growth from exercise to meditation. When I isolate, refusing to interact with friends, the pity party waits just outside the door. I have a rule of thumb today I didn't have at first. If I don't want to do something, I examine why and usually find that my motives are self serving. A better model for me is to try good selfish activities that give me the strength I need to carry out my job as caregiver. That way I am being of maximum service to myself and to Ernie.
As days turned into weeks, my frustration grew until I believed that racing off to my own private pity party could be an option in dealing with those frustrations. How quickly I learned that no amount of self pity would benefit me in any way and certainly couldn't benefit Ernie. While I was stuck in the muck and the mire, he was fighting as hard as he could. Besides, it was a huge waste of energy on my part and I needed that energy to attend to him. So after that great epiphany, I removed me, myself and I from the pity party guest list and swore to avoid that gathering altogether.
I do believe it's important for a caregiver to remember that he/she is not sick and to continue healthy activities that will provide physical and spiritual growth from exercise to meditation. When I isolate, refusing to interact with friends, the pity party waits just outside the door. I have a rule of thumb today I didn't have at first. If I don't want to do something, I examine why and usually find that my motives are self serving. A better model for me is to try good selfish activities that give me the strength I need to carry out my job as caregiver. That way I am being of maximum service to myself and to Ernie.
Saturday, July 7, 2012
THE JOURNEY BEGINS
THE DIAGNOSIS
Ernie has been fortunate. Other than suffering a broken leg at age eight and having his wisdom teeth removed as a teenager, his health has been good. Our initial trip to the emergency room occurred because he had developed tightness in his chest and he thought he might be having a heart attack. After an initial cat scan, an enormous cyst was discovered on his liver and because it was so large, he was referred to the medical center in downtown Houston. The date was set for the surgery to remove the cyst.
The day before the surgery we drove downtown, "Eye of the Tiger" (theme song from "Rocky") blasting on the radio. But what began as surgery to remove a large cyst quickly became much more. The liver cancer was discovered after the cyst was removed. The cat scan could not see through the cyst, so the cancer had not been identified. Shock doesn't even begin to cover the range of emotions that swept over me and our daughter. After the nurse came out during the surgery and told us what had been discovered, I felt as if I was in a kind of out of body experience, only partially hearing and understanding.
Whatever words are used to break the news, it's a life changing event. I look back today and realize that at that particular moment our life forever changed. I remember the fear, frustration, confusion and the questions. What would happen now? How would Ernie cope with the news? What could I do? How would Laurie cope with the news? Wrapped up so tightly in layers of fear that just keep building, I could barely breathe or move.
I bounced between the past and the distant future for quite a while after the diagnosis, asking those questions that have no answers until exhaustion took over from all the mental gyrations. Foreign to my thinking were any ideas of pausing, breathing, living in the day, focusing on positive thoughts - things I have learned to do that give meaning to life today. Hindsight is a great tool and today I understand how I was focused and stuck in the drama of the situation and see clearly how detrimental it was for me and for Ernie. But that's another thing I have learned. If my reason for looking back is to learn, then I can give myself permission to do that occasionally. But if my purpose for looking back is to punish myself or feel guilty, then I don't go there, realizing I did the best I could at the time with the tools I had then.
Ernie began his journey that day, and I joined him.
Ernie has been fortunate. Other than suffering a broken leg at age eight and having his wisdom teeth removed as a teenager, his health has been good. Our initial trip to the emergency room occurred because he had developed tightness in his chest and he thought he might be having a heart attack. After an initial cat scan, an enormous cyst was discovered on his liver and because it was so large, he was referred to the medical center in downtown Houston. The date was set for the surgery to remove the cyst.
The day before the surgery we drove downtown, "Eye of the Tiger" (theme song from "Rocky") blasting on the radio. But what began as surgery to remove a large cyst quickly became much more. The liver cancer was discovered after the cyst was removed. The cat scan could not see through the cyst, so the cancer had not been identified. Shock doesn't even begin to cover the range of emotions that swept over me and our daughter. After the nurse came out during the surgery and told us what had been discovered, I felt as if I was in a kind of out of body experience, only partially hearing and understanding.
Whatever words are used to break the news, it's a life changing event. I look back today and realize that at that particular moment our life forever changed. I remember the fear, frustration, confusion and the questions. What would happen now? How would Ernie cope with the news? What could I do? How would Laurie cope with the news? Wrapped up so tightly in layers of fear that just keep building, I could barely breathe or move.
I bounced between the past and the distant future for quite a while after the diagnosis, asking those questions that have no answers until exhaustion took over from all the mental gyrations. Foreign to my thinking were any ideas of pausing, breathing, living in the day, focusing on positive thoughts - things I have learned to do that give meaning to life today. Hindsight is a great tool and today I understand how I was focused and stuck in the drama of the situation and see clearly how detrimental it was for me and for Ernie. But that's another thing I have learned. If my reason for looking back is to learn, then I can give myself permission to do that occasionally. But if my purpose for looking back is to punish myself or feel guilty, then I don't go there, realizing I did the best I could at the time with the tools I had then.
Ernie began his journey that day, and I joined him.
Friday, July 6, 2012
My name is Pat Williams aka Patty aka Trish and I am the primary caregiver for my husband Ernie who has had liver cancer for over five years. He is a medical anomaly because he never had hepatitis and is not an alcoholic and has lived far beyond the six months he was initially given by the medical community. My primary job today is that of caregiver, but to answer who I am - I am a wife, woman, mother, educator, English and writing teacher, writer and seeker. This is day one of a blog that I hope will generate conversation, provide ideas and spread a bit of hope to what might seem like hopeless situations. I am not an expert on care giving, but I can speak to my experiences over the past five years and share what has worked for me because I truly believe there are many of you, like me, who may feel as isolated as I once did as you travel this cancer journey with your loved one. That is the ''why'' of this blog. The ''how'' of this blog I will be determined by your posts.
The idea of blogging first came to me several years ago, but as a dues paying member of the older generation, it took a while to to understand the concept of blogging and then some self education to actually set it up. Like a kid peering through a store front window at a shiny new toy, I did just that for a while: I peered without buying, but today I am buying into the whole idea. I have a round block of wood on top of my desk that is cut on a diagonal with this message painted on top: "I'm getting it together - tomorrow". Beneath it is a small blue snail and that has certainly been personal mascot for a long time.
I'd like to begin by sharing some of our history with you, long before cancer entered our lives and in future posts would like to address The Diagnosis - ours and yours, The Big "C" of Cancer and The New Normal just to list a few ideas I already have for posts. Hopefully this first post will not resemble the type of essay English teachers assign to their students and I promise not to dwell too long.
Looking back, I believe our encounter was a kind of cosmic collision. My journey with Ernie began almost forty six years ago, but my first mental encounter with "Ernie" began even further back than our initial face-to-face meeting when I was sixteen years old at a high school slumber party. Long after my girlfriend's parents had gone to bed, we grabbed the Ouija board and asked the typical teenage questions. When I positioned my fingers on the receptacle with another of my friends and asked "Who am I going to marry?" our hands were moved over the letters "u", "r", "n" & "y" - the phonetic spelling of "Ernie". Since I didn't know anyone named Ernie, I forgot about it and wouldn't remember this event until several years later when I attended college and actually met my Ernie on campus in the university cafeteria. Once again, the planets seemed to be in alignment because he would only remember me and call me because his mother's first name was Patricia just like mine and because his last name was Williams and mine was Williamson. And so it seems, the universe had plans for us. After a two year courtship and a big church wedding, we were married on November 29th, 1968. Our friendship which began decades ago has withstood the test of time. During the first years of our marriage, we worked, played, traveled and even lived for a year in New Orleans before the birth of our daughter, Laurie, on September 9, 1975.
Our years together have been characterized by highs and lows with nothing more remarkable than two people who share common interests, enjoy life, who work and play and travel, and who have lived and loved for over four decades until Ernie's life stage directions changed with "Enter Cancer - stage left or right or upstage or backstage".
The idea of blogging first came to me several years ago, but as a dues paying member of the older generation, it took a while to to understand the concept of blogging and then some self education to actually set it up. Like a kid peering through a store front window at a shiny new toy, I did just that for a while: I peered without buying, but today I am buying into the whole idea. I have a round block of wood on top of my desk that is cut on a diagonal with this message painted on top: "I'm getting it together - tomorrow". Beneath it is a small blue snail and that has certainly been personal mascot for a long time.
I'd like to begin by sharing some of our history with you, long before cancer entered our lives and in future posts would like to address The Diagnosis - ours and yours, The Big "C" of Cancer and The New Normal just to list a few ideas I already have for posts. Hopefully this first post will not resemble the type of essay English teachers assign to their students and I promise not to dwell too long.
Looking back, I believe our encounter was a kind of cosmic collision. My journey with Ernie began almost forty six years ago, but my first mental encounter with "Ernie" began even further back than our initial face-to-face meeting when I was sixteen years old at a high school slumber party. Long after my girlfriend's parents had gone to bed, we grabbed the Ouija board and asked the typical teenage questions. When I positioned my fingers on the receptacle with another of my friends and asked "Who am I going to marry?" our hands were moved over the letters "u", "r", "n" & "y" - the phonetic spelling of "Ernie". Since I didn't know anyone named Ernie, I forgot about it and wouldn't remember this event until several years later when I attended college and actually met my Ernie on campus in the university cafeteria. Once again, the planets seemed to be in alignment because he would only remember me and call me because his mother's first name was Patricia just like mine and because his last name was Williams and mine was Williamson. And so it seems, the universe had plans for us. After a two year courtship and a big church wedding, we were married on November 29th, 1968. Our friendship which began decades ago has withstood the test of time. During the first years of our marriage, we worked, played, traveled and even lived for a year in New Orleans before the birth of our daughter, Laurie, on September 9, 1975.
Our years together have been characterized by highs and lows with nothing more remarkable than two people who share common interests, enjoy life, who work and play and travel, and who have lived and loved for over four decades until Ernie's life stage directions changed with "Enter Cancer - stage left or right or upstage or backstage".
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