New Years Eve…an Outside Looking In Kind of Moment

New Year’s Eve, again. I know that sounds like it occurs often. Maybe, it is because I am becoming older and it seems that this holiday occurs quicker than I remember, but, since Dan’s death, it seems to come before I am ready.  It always feels like I have unfinished business and it is too late to complete it because a new year is beginning.

This New Year’s Eve, I had one of those surreal moments. You know. The kind where you step outside of yourself and see your life from a small distance. It is the kind that is a glimpse of yourself and you wonder just who is that person that is standing there.

The last time I did this was a Christmas Eve when Dan was in ICU in IU Medical Center. He was in 6 ICU due to complication from the massive debulking surgery. They had removed all the tumors and pronounced him cancer free. Then, two days before coming home, he began running a temperature. The next thing we knew, he had a body shudder and the young resident ordered a series of tests in the imagining department.

After 30 minutes, the charge nurse on the post op floor came into Dan’s room and began gathering all of his things and instructed me to do the same. Dan was going directly from the imaging lab to 6 ICU. He had 2 blood clots in his lungs. This was a common but critical complication of abdominal surgery. The primary risk was that the clots would break loose and go to Dan’s brain or heart. Dan was facing death again.

I spent the next sleepless 48 hours in his ICU unit. No sleeping was allowed for the visitors staying with a patient, so, if I wanted to stay with him, I couldn’t sleep. I didn’t. I sat next to his bed, holding his hand as he slept. I had to touch him. I had to know that he wasn’t going to leave without me. As I watched every part of his face and body for a sign that the clots had dislodged, I kept telling myself this wasn’t happening to him or to me. This was just a bad dream and I would wake up soon.

I knew the next 48 hours may hold the moment in which I became a widow or a wife of an incapacitated man who required more care than I could give. No matter, I was not going to leave his side. If it was going to happen, it wasn’t going to take place without me there. Finally, I was ordered by Dan, my son and the doctors to sleep. The only place to do that on the ICU floor was  in a bleak, overcrowded and smelly waiting room just outside double doors which held the gateway to my future.

That Christmas Eve, my son walked me to the waiting room and tried to help me find a recliner that would allow me rest. I was one of the late comers and all the decent recliners and chairs were occupied by the ‘regulars”. These people had loved one in the ICU. Many had been here for weeks and some for months. They already had staked out their territory. There wasn’t much left to choose from for a new comer like me.

I had to take the least damaged recliner. My son tried to help me into a chair that was a little skewed when the foot rest came out. The chair itself was broken on one side so, when the foot rest was extended, the whole chair bent like a pretzel. Regardless of  my son’s help, I still had a very uncomfortable bed. It was all that was left.

After positioning myself into the chair, I closed my eyes. Sleep was the farthest thing away from my overly tired body. My mind wouldn’t shut off. I replayed the events of the past 48 hours and it was in the midst of those reoccurring scenes that I found myself looking at my life as if I was someone  peering through a window on the outside  looking in on what couldn’t possibly be me and life as I knew it.

I remember wondering how this could be. I had seen these scenes many times. Throughout my nursing experience, I watched very critically ill patients and their families. Families trying to find a way to sleep in the ICU waiting area, watching them consume gallons of coffee. I saw worried looks on lined faces and I tried to dry the inconsolable tears that fell from the faces full of fear and grief. Now, it was my turn to not sleep, consume gallons of coffee and cry inconsolable tears. How could this be? On that Christmas Eve, I asked the questions of ” Where had life as I knew it gone? How could this be me? How could it be Dan?”

So, this New Year’s Eve as I sat in my own broken recliner watching the old movie on the TV, again the pondering over my life as it was and as it is came again. The questions began again, ” How could it be the second New Year begun without him? How could it be my life as a single person….again? How can I live without him and most of all, Where is my life without him?”  And, again, I didn’t recognize this existence as mine. But, it is.

It is a life that is consumed with making enough money to afford heat, lights and food. The basics. It is a life that is lived as a peripheral part of others, a caregiver. It is a life that is very small in the terms of being a requirement to  anyone. I no longer am someone who is in the life of my son, my daughter in law or my grandsons’.  I am not an essential part of anyone’s life anymore.  It is such a small life. ( this is not an exaggeration) My present life  is the result of how people change when the process of grief is not understood nor is there a desire to understand the details of grief and its deep scarring on a life and heart.

It is the first time of living a “small life” for me. My circle of friends are made of quality people, but the numbers are few. My working life is limited in the small number of people I care for. The majority of my professional contacts are with people who I have never met  face to face. They are voices on the phone or an address in my inbox. My work interactions are done from 60 miles south of the main office of the company. I work remotely and the distance makes things quite impersonal.

I have stopped going to church. Not because I have lost my love or interest in God, but primarily because I cannot deal with the look of pity in people’s eyes. To be pitied is a little more than I can bear. It grows tiring to be the shadow of the foreshadowing that is in literature. I know and others perceive me as their life that is to come.  I represent loss, the  pain of loneliness and grief. 

I realize that I am pulling within myself more now than the first year since Dan’s death. There are some finds this kind of withdrawal as alarming. I am not. I see this as a time for me to reassess my life and what I choose to do with it. It is a time that I take an inventory of sorts so as to know that I am living my life according to my choices and not according to my circumstances.

I must face and accept that I lost an essential part of myself, but not all of me. I lost  my other self; the person that helped me  feel alive and secure. I know that this thing called grief is a process and it is one that cannot be hurried. I also know that I have come to an understanding about something that has never been before.

For the first time in my life, my life is about me.  No longer is my life about maintaining a marriage, raising children, finding a career or making sure that everyone around me is happy. I realize that I  lived the majority of my life ensuring that others are cared  for and happy.

Now is the time that I rediscover my original self; the average yet unique person that God created me to be. It is about me learning and uncovering what Dan meant when he said that he was in my way and that he had to leave so that I would fulfil my destiny.

Of course, there are those who don’t understand, nor do they want to understand. They want me to be as I have always been. The change in me causes confusion. The by-product of being the one who maintains the emotional balance in relationships causes a dependence of sorts and when this discontinues, people can get quite angry. These changes not only confuses them, but their reaction can and does confuse me.

I was a person before I was married, had a child, divorced and remarried became a step mother, mother in law. I know for a certainity that I am not the same person I was when Dan was a part of my life. Nor, will I ever be that person again…Death changed me.

The most astonishing realization is that I do not choose to be that person any longer.   Life is about me.

My mother would not have tolerated this kind of thinking or behaving. She would have considered it selfish and self-centered. My mother was very clear that, if you loved someone, you placed their wants, wishes and needs above your own. She taught that you loved everyone more than yourself and you loved yourself last.

My mother was wrong.

It is true that you love others by meeting their needs, but it is not at your own expense. That isn’t love. That is co dependence. That is unhealthy. Learning to strike a balance is the hard part. It isn’t all or nothing. But, it is learning that wanting and doing things for yourself isn’t being self-centered. It is finding how to have life and not just existence.

Life is about me. It is about finding a way to love again. It is about finding what is my purpose and design. It is about being happy and doing so without making others miserable. I wonder if there is a book about this? Most likely, but why would I want to read about someone’s journey. I have my own book of life to write and this is the beginning of the first chapter of the last section.

I cannot continue to live as a shattered fragment with the majority of myself missing. Yes, I am in pieces, but isn’t there beauty in a mosaic creation?

I am on the outside of life looking inwards and wondering what it is that I am seeing….What is the meaning of this New Year and will it hold a new kind of happiness or will I be looking from the outside in again next January 1st and wondering just whose life is this?

Seeing Beyond The Veil…Part I

There are so many mysteries that we can never know while confined to this existence. I have always been fascinated by mysteries and now I have one that has had my attention for the past few days.

As I have written in past posts, my husband’s mother has the diagnosis of Alzheimer’s. I have come to believe that everyone who has memory loss or what was once called “hardening of the arteries” or ” senile dementia” is now given the Alzheimer’s diagnosis….truth is, this condition can only be diagnosed and confirmed by autopsy. I personally believe that it is a pharmaceutical ploy to get people to want their doctors to give them the new drugs in the hope that something can stop the progression of this condition.

I, personally, do not believe that these drugs do anything other than cause terrible side effects for those who suffer from loosing their memory and identity. Both of my “in-laws” have taken the drugs and both have not improved. They also suffered from side effects that compounded their quality of life.

It was last Christmas that my husband and I traveled the 2 hour trip because his mother’s dementia worsened and it seemed a sure bet that she was leaving the hospital and going into a nursing home. On Christmas eve afternoon, Mom’s mind cleared and she knew her surroundings in the present. This avoided the nursing home entry and we all rejoiced to “have her back”. She was released from the hospital that day.

My husband and I were at his parent’s home when she was returned. As she came through the door, she seemed to relapse into the fog of confusion and began to talk about her mother, who has been gone since 1967, and a sister who is in a nursing home in Chicago.

After witnessing this, my husband took out of the house for a walk.  I knew that he went to walk through the tears that had welled up into his eyes. He loved his mother and he just couldn’t bear to see her like this.

This episode didn’t last too long and by the late afternoon, she knew where she was and she was back into the present. This was a Christmas gift that we hoped would last, but it slipped as the days and months progressed.

From that time to this, Mom has walked farther down the road of dementia and so has Dad. It is a surreal world that they live in. Many things are a sad comedic situation to watch. Yet, they seem to find contentment that is derived from each other’s presence.

Their journey only deepens into  obscurity. When my husband died, Mom had moments where she could grasp what had happened, but they were only fleeting. When my aunt talked to her after the service, she mentioned me to Mom. She replied, “I don’t believe I know her.” My aunt told her that I was her son’s wife then the conversation turned to something else.  My aunt knew that there was not much more she could say or relate to Mom.

I called a few times after my husband’s passing. It was clear that neither Mom or Dad knew who I was and I tapered off contact. It caused pain upon pain for me and there was nothing that I could do to enrich the quality of their lives.

This past Sunday, Mom fell in the kitchen and broke her leg. The break was severe enough that a total hip replacement was necessary. The effects of anaesthesia on the brains of the demented is devastating. They seems to loose so much ground in the land of reality. So it was with her.

I did not know about her fall, but Tuesday evening, I called my husband’s brother and asked, “What is wrong.” He told me about the situation and that this was definitely the time that Mom would be going into the nursing home. He told me the details and then we said, “Goodbye.”

During the night, I dreamed of my husband. The events in the dream were sketchy, but I definitely knew it was him. It was a dream of him. I was relieved. I needed to dream of him.

When I woke up on Wednesday, I recalled the dream and I felt a need to represent my husband at this moment in the life of his mother. I knew that Dan would be there if he was able and I also knew that he would be there even if he wasn’t able. 

I called my brother in law and said that I knew the kind of pain that comes when you have to place a parent into a nursing home. I explained how heart wrenching it was on my sister, but she and I made the decision together. We also went to the nursing home and signed the papers together. I told him that this is easier if you don’t have to do it alone. I told him that I would come up and be with him, I would represent his brother and we would walk this event together.  His brother said, with relief in his voice, “Thank you.”

So, on Friday, I drove the 2 hour trip and met my brother in law. He showed me all of the paperwork and told me of Mom’s present condition. He said that she didn’t have any moments of lucidity and that Dad had stayed the night at the hospital because she was so frightened. She is a “sundowner”

That is a term used in the nusring industry to describe those whose dementia worsens at sundown. I have witnessed some to be lucid throughout the day only to slip into the fog of dementia as sunset approached. It is a common effect of the disease.

The doctor said that Mom would be released over this weekend so I wanted to go and see the facility.  While there, I was able to talk to the Director of Nursing. I asked about the training for the nursing assistants regarding a fresh post op hip replacement. I discussed the concern over Mom popping the hip replacement out.  This is common if a patient crosses their legs or if they fail to have proper alignment while they are in bed. I asked if there was enough staff to cover this fresh surgery. I also asked her how this facility was going to deal with the complication that Mom’s dementia presented.

Most dementia patients do not know that they have a broken leg or a condition that prevents them from walking. So, the patient will try to get up and walk to only fall again and exacerbate the original injury. This can lead to a second surgery which, in turn, causes more deterioration of the mental condition.

I asked her how close Mom’s room was to the nursing station and what was their care plan regarding prevention of pressure sores. I finished with the comment that this case would be “a squeaky wheel”. The DON smiled. She understood what I was saying.

“The squeaky wheel gets the grease” is an old saying used in the nursing home industry to categorize patients whose families are always present and have no qualms about complaining about the care that their loved one receives. I purposely wanted her to know that this family and their friends would be coming in to see Mom at all hours of the day and night. I believe that my comment was understood as a forewarning from the family to the facility.

I found that the best way to ensure good care is to let the facility know that we would have no qualms about insisting on good care. Even though I cannot be there often, my husband’s daughter will fill this void. She worked in a nursing facility in her town and she has training in dementia. Ensuring Mom’s care  was another purpose of my 10 hour trip.

After the meeting, I left my brother in law and went to the hospital to see Mom.  Her sister was sitting beside her bed calming her fretfulness. I entered her room expecting her to not know me.

“Hi, Mom.”, I said. I told her my name. The first thing she said was, “Dan is here. I have seen him.” I thought nothing of this. Then she said, “And so is your brother.” She then turned to her sister and asked, “Is the funeral over?”

By that comment, I was convinced that she knew who I was and how I was connected. But what caused me to pause and think was her comment that she saw my brother.

The aunt thought nothing of what she said because the aunt was unaware that Mom knew my brother. Her memory of him would have been from when they lived down here and pastored my church.

My brother was my husband’s employer. My brother was the one who taught my husband how to drive a semi and by doing that, my husband always had employment.

Dan spent a lot of time at my brother’s house. They both loved cars and,  when my brother bought a 1970 purple ‘Cuda that had the highest performing engine that Mo Power ever produced, Dan was the first person that he showed his new car to. That was an honor. My husband and my brother were so very much alike.

For Mom to recognize my brother in her room, it meant that he had to look like he did in 1970…

My brother has been dead for close to 20 years When I entered her room, she saw the two men that I loved most. Both are dead. In her dementia, could she be seeing “behind the veil” that is between this world and the next?

” If I Don’t See You Again, It Has Been An Honor “

I have just come inside after trying to mow our acre lawn. I seem to have lost a part of the exhaust on the old Bolens mower and it seems to have overheated and blown a head gasket. At least, that is my best guess as it blows white smoke from under the hood…

I stopped mowing when it started to belch out the smoke and when I raised the hood, oil was thrown all over the exhaust. When I opened the breather, it was full of oil…most likely, head gasket…it is going to be a long summer.

I started the LawnBoy push mower to try and finish up, but I finally gave up. I am really tired after today’s events and my allergies are having a fit. What a disappointment.

I was looking forward to mowing until sunset…around 9:30 PM. I do a lot of thinking while I ride the old lawn tractor. I needed to do some thinking this evening. I needed to ponder on what our family doctor said to my husband today.

Usually, on Wednesday, after his usual patients, our family doctor has us come in to do a little talking and then he takes my husband through some peaceful imagining and sometimes, he lays his hands on my husband abdomen.

Early on, we learned of our physician’s commitment to holistic healing and we have enjoyed this 45 to hour time that is used to block out the events of the week and look ahead to whatever comes into our lives. Today when our doctor saw him, the first question that he asked my husband was how much he weighed.

My husband told him and then he looked on the chart and saw that he had lost over 20 pounds since he last weighed in at the office. That was about 2 weeks ago. That is a lot of loss in a short time. It seems to be advancing and the loss of weight tells most of us that the cancer is winning the battle.

My husband enjoyed today’s session immensely and he got up off of the table to feeling like a new person. His energy level was increased, he felt a sense of well being and he was renewed. His fatigue seemed to be gone. That was amazing.

Our doctor informed us that he would be gone for two weeks and then he said, ” I expect you to be here when I return, but, if I don’t see you again, it has been an honor” and he put out his hand to shake my husband’s…

I wasn’t surprised by this statement. I think that my husband will be here when our doctor returns, but I also see why our doctor wanted to say this to him. There is no guarantee that he will be here. The time is getting closer for my husband’s journey on Cancer Road to end.

My husband complains that he is so tired and he is short of breath when he moves around too much. He doesn’t have the will to push himself to do things as he has always done in the past. This kind of fatigue is beyond just being tired. It is an absence of life force, it is an emptying and a lack of replenishment of life…

My husband has said a few things that lets me know that he is aware that he cannot continue on much longer. He sees his face in the mirror and he doesn’t recognize the man that is standing there. His eyes look so big and open now. He sees that his muscle mass is dwindling.

It doesn’t make it easier to see this and make these kinds of realizations. He wants to live and he wants to be a part of his children and grand children’s lives. He knows that all, but my oldest grandson, are too young to remember him when they grow up. He wants them to remember him, not from photos or from stories; he wants them to have their own memories. But, most likely, they will not.

Our time with our family doctor has been such a blessing. This young doctor has a wonderful heart and he does practice the healing arts and not just the science. He truly cares for my husband. That bond has grown over the months and it was clear that saying this to my husband struck a deep cord within his heart.

There are no words to express our gratitude towards this remarkable young man. He has been a great part of this journey and he has played one of the most important roles in my husband’s survival…I truly hope God blesses him as he has blessed us…

As for the next few days, I will have to push mow this monstrous lawn. Summer is just beginning and that is a lot of pushing and shoving….maybe, I will plant wildflowers and place signs along the road for people to not mow, native wildflowers growing…

Update, Day 7

I don’t have much time, but I wanted to update everyone on my husband’s condition. I will try to write more about a few things in detail later, but this is where things stand as of today.

Since December of last year, we have gone for consultations about my husband having a “PEG” tube placed in his stomach. This tube is used for several different purposes, but for my husband’s condition, it is to relieve pressure when the bowel obstructs. This tube eliminates the need for him to have a NasoGastric Tube when these episodes occur. It also can be utilized for other things, i.e. medications, feeding, etc.

In December, we saw a specialist and he said that the tumors had bonded to the abdominal wall and there is no place to “anchor” it. We talked to my husband’s original surgeon at IU Med and he said the same thing.

In the past few months, a new doctor who specializes in bariatric surgery came to our local hospital. On my husband’s admission, he consulted on my husband’s case and echoed the same sentiments. Then something happened.

On the third day of my husband’s hospital stay, my cousin, the one who comes and sits all night with my husband and prays, asked me to do him a favor. He asked me to ask our family doctor to have this new doctor to reconsider doing this procedure. So, I left a note on with my husband’s chart for our family doctor.

One of the concerns about this tube placement was that this may allow the cancer tumors to come to the surface and grow on the outside of the abdomen. I stated in my request that we were willing to take this risk.

Frankly, I would not have minded because I have a particular treatment using collaided silver (it is the main component in a powerful ointment used in severe burns) that I would apply to anything that appeared outside and on the surface. I also asked the family doctor to understand that we know that this surgeon may refuse again, but you never know until you ask, and ask again.

I knew that my cousin and his wife specifically felt led to ask this of me. I also knew that they had specifically prayed for the surgeon to consider and reconsider. This was a very specific prayer.

To our “surprise”, on the second consult, the surgeon said that he thought there might be a chance to do this if the procedure was done in conjunction with a real time CT Scan….it was a slight chance, but as in the prayer, he was willing to consider and reconsider.

This particular tube would eliminate my husband ever having another NG tube down his nose and he would not have to go into the hospital when this problem occurred again.

Yesterday, at 11 AM, the procedure was done. The surgeon got the PEG tube placed….my husband is without the NG tube and the tube is functioning wonderfully. I don’t know how to express what a wonderful thing this is.

My husband is going to be able to come home without a NG tube. He will have other tubes, but he will not have to suffer with something down his nose for the rest of is life….

I have more to write about the “small miracles” that I saw in answer to prayers that I know were prayed, but I don’t have time to write about them now…

I suppose the moral of this story is this: We were told “No” 3 times by 3 different doctors and the last one said “No” first. But, with persistence and prayer, something that was impossible or too risky medically, was accomplished.

For those who have cancer, please take a note. No matter how many “No’s”, don’t give up on the first one. Ask, ask, and ask again.

As I look back on two of the most crucial things that were important occurrences for my husband’s survival and for his comfort, the debuking surgery and this tube were accomplished by being persistent in the research and in the asking. Both these life saving and quality of life procedures were first denied or they were said to be impossible…but they were found and they were accomplished because we wouldn’t accept the “No’s”.

Don’t take “No” for an answer if you feel in your heart that there must be a way or that there must be a procedure that is key to your quality of life. I is worth the aggravation to yourself and to the health care provider for you to persevere.

I can’t express to you enough how persistence, dogged determination as well as, intuition and prayer are so important in treating this thing called “Cancer”.

Listen to what your doctor says and also listen to what your body and “gut” tells you. You will never regret preserving and asking to for the doctors to consider and to reconsider when it comes to things that you feel are so important…

Well, enough of that. My husband is possibly coming home today. He will come home on home health and not hospice…I will write more about the why and the what that are involved about these two things, but for now, I must get ready to leave.

My heartfelt thanks to all of you who pray for my husband and I. My heart is overwhelmed by your support, your “hugs”, and your willingness to walk this journey with us…

This blog and the people who meet me here have become one of the greatest comforts and encouragements. The most surprising part of it is that when I began this blog, I thought that I would be writing words and flinging them out in this cyber space. I never imagined the support group and they love that I find here.

I ask with all my heart for God to Bless each one of you as you have deeply blessed my husband and me….

 

These Past Few Days

This week has been a very difficult one. I find that I restrain myself from becoming to familiar with the daily routine or from becoming accustomed to  everyday life. Why? Because I am afraid.

I am afraid that just when I come to such a place, there will be a change or an emergency that upsets what I have grown accustomed. I am afraid to take life “for granted” like I did before Cancer came…

This week has had a few days like the ones that I have always dreaded. Truth is, I have dreaded many days since that afternoon when all that the doctor could say was, ” I’m sorry, I’m sorry, I am soooo sorry.” But, these kinds of days and the changes that they contained are the kind that I have been watching for since the beginning.

I believed that I saw it before, but I was mistaken. In January of this year, I saw him fade. I saw him loose hope and he predicted that he would be gone from this earth in March. Thankfully, his prediction was wrong and he not only made it through March, but April and now, we are beginning the month of May.

Currently, things have changed. I see it. Even when I refuse to let myself think about what I see, I feel it. He has an increase in pain. All of the medicine can’t bring relief. As a nurse, I am not without a few skills in regards to medication and I know how to get more ” bang for your buck” with his pain pills, but even with my knowledge, it is not enough.

I see the palor that is on his skin and I watch him become so fatigued. Doing the simplest of things, I see a different kind of recognition in his face. He tells me and his doctor that he is staying postive. Yet, I know in the dark hours of his sleepless nights, he is battling fears; fear that he may be dying. He has so many unspoken fears.

He trys his best to not be as irritable as he feels. I see this great effort as he “bites his tongue” and remembers to ask for things politely when he really wants to yell out whatever is on his mind. He is always giving me little hugs and tells me that, “There are no words for the love I feel for you.” And I know, that he is trying to tell me, not only how much he loves me, but how grateful he is for all that I do for him…

It is tearing my heart out to watch his simple gratitude. He never takes things, no matter how small, for granted. He must have a hidden fear that I will become unable to take all of this and leave him…doesn’t everyone have that kind of fear??? I think that I would. His past tells him that there are those who would leave him should cancer been his plight in his earlier years. It cuts my heart out with a spoon to see this primevil fear rear its ugly head to him. I would never willingly leave his side nor could I leave it.

Deep inside, I know that this isn’t the hard part as yet. I know that the hardest of days come at the end of life itself. The most difficult of days and nights come when he can’t find relief from the pain. It is when the medication enfolds his mind in a semi-twilight, in a place where my words fail to reach him. It is a place that leaves him in between worlds and I can’t go there with  him …

Maybe, I haven’t had the faith that I should have. Maybe I have depended too much on those who are faithful to pray for us and uphold us. Maybe, I have failed to pray for him enough….I don’t know.

I seemed to have placed us  in these wonderful people’s care. I believed that I did this because there are times that I am too close to the situation and my ability to know how to pray or what to pray is beyond me to form words… have I failed him???

I don’t know. All I know is that right now, the pain has lifted and he sleeps. When, I covered him with my cape, he stirred and I quietly asked if the pain relented. He said it had. All I could do was say, “Thank God, thank God, oh, thank you God…” I suppose that I was praying and was not aware of it. I must have been praying because all I could do was give God thanks for the relief.

I have a feeling that I will be doing that a lot…praying without knowing and thanking God when I realize my heart’s silent cry has been heard.  I wish that I could do more, but that is the best I can do now…I am so relieved that he is relieved…I don’t care how long, just as long as he finds relief.

The tears are on my face as I write these few words. I didn’t realize that I was so stressed until these tears of relief spilled over my eyes. He must not see them. I always make sure that he doesn’t see me cry. He is a “fixer” and he will feel responsible for my tears. These are tears that he can’t fix but his heart would try….

I am afraid of these kind of days…but, I know that they may come and I hope that they will go. I hope that these days won’t stay and we can return to the little familiar ways that we have found to live. Yet, I know that I can’t take anything for granted anymore.

All I want is a quality of life for him. I want this quality right up to the very end…This is my desire. It is all I want. Just to have these most precious of days to last and to be without pain. I know that is a lot to ask, but still I must ask for these days to pass and we find a few more days…

Shades of Frustration …

Our emotions are such a vital component of this journey. The diagnosis generates the beginning of the roller coater ride of thought and feelings. After the initial shock and the search for hope in the prognosis, you begin to search more for an indicator of sorts to point you toward a way to manage  your inner life of feelings, emotions and the role they play. It would be nice to have a manual of some sort for help in recognizing the signs of overload, exhaustion, and frustration.

I am sure there is a self help book dedicated to this sort of thing, but going to a bookstore to find such an “animal” just is not on the list of priorities when this journey is fresh and this journey is nothing but a flurry of activity generated by test, procedures, and doctor visits. Yet, it would be nice to have a brochure or pamphlet similar in design to what is handed out when you begin a new medication or when you have a new apparatus such as a continual pump etc.  A short overview as to  what can be expected concerning the emotional impact would be so helpful as well as a guideline to help identify the different forms of negative feelings. Just a clue as to their effect on the patient’s physical, emotional and spiritual health and what is their effect on the spouse or caregiver would be appreciated.

Abbreviated information to help in knowing what is close to “normal” for the fears that grip you in the night would bring assurances. Or a few suggestions as to where to look for a little joy or a ray of hope at the beginning of the journey would be nice with a side note as to where you can go to find a few moments of that feeling called “relief” would calm the deluge.

One of the more difficult and pestering emotions that seems to show up on a daily basis is called “Frustration”. It is the nicer term for the controlled emotions of fear and anger. Frustration seems to have shades or degrees of intensity and it seems to have an unlimited source. It is found in the mundane as well as the dramatic. It isn’t confined to just our perspective.

While My husband’s son was here for a few days after our ceremony, he decided that he would spend the day with his dad by running “errands”. It was a welcome relief for me to not have to do the running around and I could have a few hours at home.

The first stop was the family physician’s office for a blood draw. My husband’s medication dosage is based on the results. Each week, we go in and have the blood work done then later in the day, the doctor’s office calls with the adjustments. Because of it being the height of the cold and flu season and my husband’s compromised immunity, I sent masks with both my husband and my stepson.

The next stop was to the pharmacy for the monthly refills of medication and then onto the local WalMart (which I find a major challenge on a good day) to pick up a few things  for supper.

Those few hours with just me and the dog in a quiet house without any demands were relished and greatly appreciated. For me, there is nothing like having the house all to myself that recharges my emotional batteries.  I have always  thoroughly enjoyed the personal solitude that this experience brings. I suppose it is the way I am made. No complaints, here.Please don’t misunderstand, I do not consider anything that I do for him a burden or imposition.

When my husband and stepson returned, I saw a look of wear and tear on my stepsons’s face. It is the recognizible look of worn frustration. I asked him what had happened. He  proceeded to tell me about the long wait at the doctor’s and having to listening to the guy next to him cough up a lung. Then he said that the pharmacy was a crowded with lines as long as an amusement park. He said that the wait there was almost as long as at the doctor’s office. He noted that it appeared as if the entire senior citizens population of of our small town was in that drugstore. He continued on with the same observation at WalMart. He said that everyone in there seemed to have blue hair.

I said that I understood what he was saying because that was a normal “first of the month” occurrence. I explained that his father and I seem to have stepped into a time warp that has propelled us 25 years in our future. Stepson said that his dad made the exact same comment.

I explained that his dad and I never expected to be living like his grandparents at our age. Even though we aren’t even close to the age of Social Security Retirement, being on Social Security Disability made us subject to being a part of the “First of the Month Club”. Explaining further about how the government money hits at the first of the month, we members quickly visit stores. For many of us, food and supplies run low or completely out. Should that happen, you do without…

I pointed out to my stepson that living like this is quite frustrating and we have had to adjust to life on a fixed income. The frustration that we experience isn’t having to live so frugally.  When the doctors said that his father had 6 months to 2 years left on this earth, we chose for me to stay home and care for his father. We chose to absorb every  moment, to seize it, to experience life together as long as we possibly could. 

What was the more aggrivating aspect of living like this was knowing, at this time of our life, we were not suppose to be here . Whatever our sense of normalcy was prior to cancer was totally erased and replaced with living like we are ’70 something. Overnight, we went from being early middle aged to senior citizens… it just feels so weird to be grouped as part of the “Blue Hair Herd”.

Frustration of life circumstance is one of those “normal” emotions after cancer put us onto this road, but there are plenty more forms that it can take. For my husband, the most recent aggravation has become the continuous “follow up” visits scheduled by the oncologist.

Yesterday, we had a “re” scheduled follow up appointment with the oncologist. As the time drew closer to getting ready to leave, I could sense my husband’s frustration building. He was becoming more grumpy and I finally asked him what was bothering him.

He replied that he did not see the necessity to keep going to these “follow up” visits to a physician who has already stated that there is nothing more to offer him in regards to cancer treatment. What was the need to go in and try to be punctual , sit in the waiting room observing that we are the “kids” in regards to the mean age of all of the other patients, wait in a tiny cubicle that is colder than an igloo, make conversation with the doctor about her most recent travels, lay down on the treatment table for her to measure the increased size of the tumors, put clothes back on, say your good byes and go? All of that takes 3-4 hours out of a life that may have a limited amount of hours remaining and all for what????

I couldn’t find one argument as to why he should do this. It didn’t make sense to me either. There was no new drug on the market, no new surgery or surgeon, no new method of administration for the chemo drugs, nothing, nada. Why, indeed!

As I watched the frustration continue to build, he finally said what it was that was frustrating him the most about this appointment.  He said that every day that he went in for his IV Vitamin C treatment, he could feel that no one believed that this vitamin regimen was worth his time. However, this pallative treatment was more benefial of all of the  treatments that he has received in that clinic. He said that the process of building up his body gave him a “quality of life” result and it was the only treatment for which he believed worth his time and effort. He said he could sense that no one in the clinic believed,  had a positive thought or shared in his belief that God could perform a miracle and spare his life. He said that he could feel the negative thoughts disguised in pity and compassion draining his hope when he walked in the door. That unspoken disbelief caused his frustration to build to the point that now, he  has associated frustration with the clinic. He didn’t want to go there unless it was for his high dose Vitamin C IV treatment.

That is all that I needed to hear. I went to the phone and call the doctor’s office to cancel the afternoon appointment. When there was no answer, I left a message stating that he wasn’t coming and if they needed to charge us for the last two missed appointments, go ahead. (There are some doctor’s offices that charge you if you don’t show or if you call to cancel the appointment at the last minute.)

Minutes later, the secretary  returned my call and said that there were no charges for missed appointment. She said that it is understood that cancer patients cannot always make their appointments. Most patients can’t predict how they will feel on the day of appointments and cancelling at the last minute is not a problem. Then she said in a compassionate voice, “He is giving up, isn’t he?”.

I wasn’t expecting that and it stunned me for a moment. I thought to myself, “Quite the contrary. He doesn’t want to hear anymore negative words spoken over him and his condition.” However, I kept that thought to myself and replied that giving up was the farthest thing from his mind.

I explained that he knows that there is nothing new to hear and nothing new to report.  I explained that he doesn’t see the need for follow up appointments and he just doesn’t want to spend the time in the doctor’s office. I said that we would call if he wanted or needed to see the oncologist but there was no need to reschedule this one.

The secretary was very pleasant and said that was fine. She said that she would relay his desires to the office nurse and then onto Doctor. I ended the converstation by saying that we would be calling soon to schedule another Vitamin C IV treatment and we would see them all then…

The look of relief on my husband’s face and the break in the tension in the room was worth the phone conversation. Why encounter just one more “something” to become frustrated over when there is nothing to gain, but frustration? Makes perfect sense to me…

I think that we found one more way to handle the frustration/fear/anger combo. Eliminate those things that work against a positive state of mind, even when it means not seeing your oncologist…

I doubt if we would find a chapter in that non existent emotional manual called frustration, but I think that we are not outside normal bounds by managing frustration in this manner…

What began as a dark, deep shadow, ended up being a lighter shade of frustration for this day…..one more prayer answered….one more day without a the burden of a negative emotion…better yet,we found it!!!!

….ah….relief

 *smile*

Adding To The Shadows Part 2

The following is an excerpt from a paper that I collaberated with my daughter in law for one of her college Sociology classes. She deserves the credit for writing the paper. I contributed to content from the experience with my husband. It should be noted that my son, the husband of the author, is a traumatic head injury x2 victim. He was injured while serving in the US Marine Corp.

Why does a free society allow insurance providers to dictate patient health care as deemed medically necessary by the attending physician?

     This paper focuses on quality, timeliness, and efficiency of medical care based on the allowable limits that insurance providers impose upon individual healthcare. This topic needs to be researched due to the fact of the rising costs of medical insurance which in turn causes individuals and companies to purchase less than adequate policies. This gives authority to the insurance companies to decide what medical tests, procedures, and doctors that a patient can select and it includes medically necessary pharmaceuticals. This takes personal empowerment from the patients and professional provider and gives the final decisions that were once made by the physicians and places it on  an impersonal enitity such as an insurance provider that does not have adequate medical training, empathy or understanding of patient needs.

     ………we are operating from the perspective that medically necessary healthcare is limited by concrete and immovable requirements as deemed by medical insurance carriers. …… The following passage is from the American Medical Association. This information reflects a case study in which the insurance provider of this patient limited or prevented adequate medical care.

     “Allison is the resident taking care of Renee and is concerned that Renee is not doing well enough to be discharged. Allison would like to keep Renee in the hospital another day to ensure that she remains afebrile on oral antibiotics and that she is able to go 4 hours between treatments. The HMO, however, refuses to authorize additional inpatient care. The HMO has authorized payment for a home nebulizer for Renee, and the administrator for the plan feels that someone of Renee’s age with her history should not require additional inpatient care.” (American Medical Association, 2007).

     There are many resources and personal accounts of individual freedoms being compromised by insurance providers dictating less than adequate or medically necessary healthcare. The following an excerpt is from an online blog of several individuals discussing inadequate healthcare treatment.

     “Insurance companies and pharmaceuticals have barged in and made their camp with our trusted physicians. We are losing out on recommended tests and proper physicals as well as unbiased decisions on prescriptions! Have you been refused tests you know you should be getting? Open up! Don’t stand for it! ( I especially talk for women, as they will be refused the same tests a man gets automatically saying-*it happens to women*, it’s this, or it’s that, and refuse a MRI, or other important testing!-it’s total Bul ****-with a capitol on the *bull*) Are we going to quietly allow these corporations to dictate our healthcare?” (E-thepeople.org, 2003).

References:       American Medical Association, (2007) HMO-Dicated Patient Discharge           Retrived 09-24-2007 @ http://www.ama-assn.org/ama/pub/category/12045.html    E-thepeople.org, (2003). Who is governing Insurance Companies’ Rights to dictate Healthcare. Retrieved 09-24-2007 @ htt/://www.e-thepeople.org/article/31509/view?viewtype=best&skip=10

………Conclusion: Are we as a society going to accept healthcare designed by impersonal insurance dictations or are we going to find the solution by raising our voice? This problem impacts innumberable families on a daily basis because at the end of the day, it is the quality of life that truly matters.

     The subject for the paper was what freedoms have we lost that we once took for granted. The healthcare paper was in response to my daughter in law’s recent days fighting with the insurance company for coverage of a medication for vomiting. My son has intractable migraine like headaches. Some days, he has as many as six/day. Not all headaches cause nausea and vomiting, but those that do exasperate his headache pain to the point that it is unbearable. When that takes place, my son has to be loaded up in the car and driven 20-30 minutes to the local hospital for treatment of IM medications. This 30 minute car ride is where my son screams in pain until he reaches ER.

     The medication that he needs is Zofran sublingual. This medication is the only one that can prevent the kind of episode that I described and the medication is also called “Gold” because of the cost. If my son had cancer, like my husband, the insurance company would have no trouble approving it because it is necessary to control the nausea and vomiting that results from chemotherapy. But, because my son has traumatic brain injury, the insurance company, in their great wisdom, withholds its approval because there are other anti-emetic drugs. They want to ignore that my son has taken all of the alternative anti vomiting drugs and they do not work for him. The Zofran does work.

     As my daughter in law argued with the insurance company, the realization came that 25 years ago, the doctor would have ordered the medication, the insurance company would have paid for it and that would have been that. Since the days of HMO and managed care, the insurance companies have become little gods and approve or deny a persons care.

    As my daughter in law continued to debate and argue the issue, I thought about the intangible aspects that these publicly traded companies can never value. They can never understand the terror that my grandsons endure as they are all in the car racing into the night with their beloved father screaming at the top of his lungs for 30 minutes until they get to the ER. If this Fortune 500 hundred company could see the horrified wide eyes of these two beautiful children, would they be so insistant in denying approval of this drug. What is the cost of “Gold” if it prevents my grandsons the emotional trauma that they will have to overcome in their adult years because they have a family with a 100% service connected disabled and unemployable veteran in their family? How can you give a monetary value to the nightmare that they have already lived through in their young lives????

     Just as my husband waits to see if we can get assistance for the cost of the Xeloda, which will determine if he stays here through the holidays or not, the question begs to be asked, who is in control over his body? Is he, or is it companies who control medicines? Right now, it is not my husband.

      Just something else that adds to our Shadows as we walk toward the sunset…….

    

                                     

Beginning of the End

     I am sorry, but I cannot continue with the series as I once thought. Somehow, I thought that it would be good for me to write about the journey and it would give me perspective on cancer and living. In reality, it hurts to much to recall the journey that I am trying to write about. It hurts to remember the hope that came the day of the surgery when the surgeon said that everything could not have gone more beautifully. It hurts to much to remember the sheer elation that I felt when I heard the surgeon say that he was cancer free. And that my husband would measure survival in decades. It hurts to much to remember that I believed that we received a miracle. Unless a decade is comprised of two years, we haven’t had a miracle or a decade. The reality of the present and the memories of the past are so great in disappointment that my heart cannot continue to remember. I know that the surgeon tried and he did his best. It isn’t enough. Everything that we have done and everything that my husband has endured is not enough to keep him here on this earth. It isn’t enough.

     I hurts too much to remember that after the surgery, we looked to the future for the first time in months. We moved to the family farm with the hope and belief that we were going to live our golden years. It meant that we were about 20 years premature, but we were going to watch the sunsets and enjoy beginning again. 

     For four months, the tumors were in remission and we looked ahead instead of behind us. But then there was the day that he noticed the hard quarter size place on his suture line. In the late summer, the surgeon said that it was a stitch that failed to dissolve or an adhesion. He wasn’t worried. It began as the size of a quarter. In two months, it was the size of an orange. By the time we could get into see the surgeon in January of this year, it was the size of a grapefruit. I knew it wasn’t good when the surgeon sent us directly to IU Med oncology. I knew that the hope that surgery gave us was gone.

      And now, the tumors are everywhere. They totally fill the abdomen and the room that was achieved from removal of the spleen, the bowel and everywhere that was occupied by the original tumorsi s lost. The tumors and their size are filling every space and crushing every organ that is in his abdomen. I guess we are waiting for them to squeeze the kidneys or liver into shut down.    My husband has taken the integrative treatment, the chemotherapy, changed his diet and he has done everything that can be done. Nothing has stopped or deterred this menace. It is like an advancing horde that knows no barrier or respects no one or nothing.

     Yesterday, we saw the oncologist.  There is one type of chemo that my husband has declined to consider until now. He has steered away from this therapy because of the history of stroke in his family. One of the risks of this drug is vascular complications and that includes stroke. So now, we are at the zero hour and we have this as the last recourse. I hate the feeling of desperation that comes when the options are whittled down to none. But, as our oncologist said yesterday, the only treatment that was available was for a cancer that he does not have. He does not have colorectal cancer, but that regime is all that they have to work with for his rare, terminal and advanced cancer.

     That has left us with taking a treatment that puts him at risk for a possible condition that can diminish his life quality or an abrupt ending of his mobility. But, what are the risks verses the outcome of death? Now, the risk is the minor concern. The major concern now is the cost of the treatment. As we began looking into this treatment, we don’t know if we can cover the co-payments of the medicine. I don’t think that we make enough money on a monthly basis to cover the co payment  medication, so the nurses are trying to get the medicine covered through some sort of assistance through the manufacturer of the medication. If they cannot get the assistance, the journey is over and he will not be able to take the chemotherapy.

      That is why I can’t go on with the reminiscing of this journey. Remembering the relief, the hope and the past causes too much pain as I realize that we are just months away from the end. Even with the new chemo, it is only a stop-gap measure. We may or may not see this year out and the new year in.  It hurts too much to remember the journey and the hope that I felt  now because the present tells us that it has all been done in futility. Everything has been done for nothing. Or, almost nothing. He has lived two more years than he would have had the surgery not taken place.

     Futility isn’t something with which I do well. I really don’t like loosing at anything and in the past 5 years,  that is what I have done,  loose. Loosing at life, is so unacceptable to me that I am failing in all areas of life. I am unable to focus on the basics of daily living, and the sad part of it all, I know it.  I am in suspended animation. I am not living. I don’t recognize this as living. I am so lost in this game called Life. And the really sad part of it all, is that it isn’t about me. It is about him and my call in life to help him leave this world. My selfishness is too great. I can’t think about much of anything other than he is leaving me. It may be against his will, but it doesn’t change the fact. He is leaving me. He is going somewhere that I can’t go. And it torments me.

       I may be able to tell the rest of the story of the Journey into the Shadows, but right now, the Shadows are deepening and I must concentrate on looking into this dark night and not behind to yesterday when the shadows were only gray.

      I don’t know the outcome of the next chemotherapy, other than the oncologist told him that there is nothing that is going to stop this approaching walk into the sunset of life. I saw his face and it is clear that he is not ready to face this. I know that I am not ready. We are loosing hope. Nothing can live without hope.

     I believe I saw how he will be ready. Yesterday, he had such terrible pain and pressure that he began to cry. Of course, I pulled out every painkiller that I had and like a witches brew, I concocted the most powerful and fastest acting response that my nursing background could muster. Pain is the enemy and I can fight it. I could see the fear in his eyes and I felt the helplessness inside of me. I know that this kind of distress is where his daily life is headed and I don’t want to watch his pain and my helplessness.

     Within 15 minutes, his pain was receding, but I saw how his resolve to not leave me will be eroded. It will be the pain that causes his grip on life to be loosened. It will be pain that will pry away his will to live. It will do it one finger at a time. It will also be what causes me to surrender him to the inevitable. I can’t endure his pain. I will let go so that he can be without the pain.

       Yesterday was a dress rehearsal, and today, is another day. I don’t know what is in store, I just know, I can’t go back to yesterday’s journey. I can’t remember the hope that was so alive and well in me then.  It hurts too badly and the days ahead will have enough of pain. Whether it is the physical pain or the emotional pain. It will have enough.

      Today, I have to live through it. Yesterday is gone and tomorrow may never be, so it is today. “As long as it is called ‘Today’…….” I want to believe that as long as it is called Today, there is hope. But my grip on hope is being pryed away, one finger at a time by his pain.

     Is my God too kind to be so cruel? I always believed so. It is my faith that is shaky and that is truly frightening. Without my faith,I have no hope. Having no hope is the beginning of the end for me.

     I am hoping that tomorrow brings hope. Somehow, I must find hope.

Shadows of Things to Come

We had an episode last night that was quite alarming. I was on the phone and walked into the living room where my husband was watching TV. I had heard him coughing and wanted to see if he needed any cough syrup.

When I saw his face, I knew that it wasn’t the usual cough from sinus problems. He was clutching his throat and he was trying to talk. It was similar to when I have a bad asthma attack. He was able to get out that he had taken a drink of cold water. 

He had such a look of panic in his eyes. I hung up the phone and I began to assess the situation. I knew that this was like one of the warnings regarding a side of effects of one of the cancer drugs that he took. This drug continues in the body after the patient stops taking the chemo drug. One of the side effects is having a tingling, almost like an electric like shock to the hands, should you touch something cold; but this was like the other side effect that we were warned about. If you went outside into cold air or drank something cold, you could have a laryngospasm like response. A laryngospasm is when you feel like someone is holding their thumb in the middle of your throat. It feels like this even when there nothing is obstructing the airway. The patient feels like they are suffocating.

He kept clutching his throat and he began to hyperventilate.  I saw that he was not changing blue in color nor was he cold and clammy. I knew that he was getting oxygen and this was a side effect of the drug rather than an immediate problem. I began helping him to breath slowing through his nose and his mouth. As I instructed him to slowly breath in and breath out, he began to relax and the terrible feeling was beginning to subside. As he laid back in he recliner, I saw a lonely tear form in the corner of his eye and I realized that he thought that this may be it, he thought that he could be dying. I saw the fear that hides in the shadow of his mind. I knew that he saw the look on my face as I was trying to quickly decide whether this was something I could handle or that I needed to call for help. It was a moment of truth and reality.

Severl time, he has asked the doctors what to expect when it is time to die. He wants to know what to look for when his time on this earth is coming to a close. The doctors try to  find ways to side step a direct answer to his direct question. As a nurse, I have some idea how this may end, but I also know that there is no exact path or no exact predictions to make. Cancer never ends a life. It is usually complications or infections that will kill the body. The doctor’s lack of cander is very frustrating and frightening to him.

After about 30 minutes, he was sleeping in the recliner and I was grateful. It was a reality check for both of us. To survive living with cancer, there is a certain amount of denial that is required. If you don’t try to live some semblance of normalicy, there would be the tendency to find a spot and just wait for death to come. It seems like that anyway to him and to me sometimes. Instead, telling yourself that death isn’t here and you have to find a way to live, you go about your day, washing dishes, mowing grass, feed the animals and making meals….. But, just underneath the surface of conscience thought, you know that with each season that passes, you wonder if he will be here to see the same things next year.

Anticipation isn’t an easy thing in which to live; even more when it the anticipation of death. Living in the shadows can be frightening. It is the unknown that seems to plague your waking thoughts. Is this the day? Is this the time? How much pain is coming? How long, oh Lord, how long?

New Beginnings

In the midst of shadows, there are new beginnings. I had a very poor understanding of blogs and their uses until I discovered a few and I got up the courage to post a comment or two. Now, there are blogs that I visit daily and I have found comfort in reading others thoughts and ideas. It is like a window into a personal’s mind.

Because of these strangers and their humor, intellect and information, I chose to share a window into my mind, heart and soul. Now that I have a better understanding, I decided to changed the look of the blog as well as its emphasis.  It will continue to walk through this Valley of the Shadow because I have no choice. Cancer has dictated it. But, I will focus on those who love and care for those with cancer. There are countless of us who are on this road. If we could glimpse into a different dimension and see all of us who are walking on this path, it would take a six lane superhighway that streatches for countless miles to accommodate all of us who are effected by cancer. Yet, so often, we feel isolated and alone. That is why, I want to shift this blog from just my narrow personal focus, to one that has a broader view with issues besides medical treatment.

That doesn’t mean that I will stop writing about shadows and being in this valley. This valley is where I live. But, I don’t want to forget that in the shadows, there are wondrous beauties that need to be appreciated. There is a big world outside of this valley and it is easy to loose perspective. Cancer places people in isolation and it is confining. But, there is hope. As long as there is breath, there is hope.

 At this time, I may not be able to connect or to be a functional part of this bigger and brighter world, but I don’t want to forget that is is there. Hopefully,  others will post a comment to bring life back onto perspective.

I will be focusing on issues concerning cancer care, emotional support and surviving with quality of life and who knows what other issue will arise that will cause the need for me to have a voice. So many times in cancer treatment and care, it feels that there is not voice and when you find the voice, it is so angry. I suppose that this blog is a voice for me and my husband. We need a voice.

 The thought of living past the moment when my husband may not be with me is the largest shadow that looms over me and my future. I need to share these thought, insights and blatant emotions because when it boils down to one point and reason for this blog, it is for me to survive Walking in the Valley of the Shadows of cancer. Sounds selfish, maybe, but is doesn’t change the reality. In the midst of the valley of death, there is life.