Christmas Shadows

            “…May your days be merry and bright….and may all your Christmas’ be…..”

They sat in their living room watching a DVD of Thomas Kinkade Christmas. It was beautiful depictions of a wonderous time when snow made it a Winter Wonderland and horses were pulling sleighs. People were bundled in their 19th century garb and they were ice skating on picture perfect ponds.

My husband’s father had a camera snapping pictures of the TV screen. I didn’t understand why until “mom” said that it was the poor man’s way of getting a Thomas Kinkade picture….I don’t know if he seriously thought that he could take a picture and have it enlarged for a picture to hang on the wall or if he was being funny. I think that he was serious in his endeavor and I thought, “How bizarre!!”. But, in light of the circumstances, it isn’t.

Both of my husband’s parents have dementia. Mom’s diagnosis is Alzhiemer’s and Dad’s is organic brain atrophy. No matter what the diagnosis, it is dementia and they live in a fog every day. They move in and out of the shadows of time and of their mind. No one knows where they are most of the time. They repeat themselves in actions. Mom repeats the same sentence 2 or three times and if it is a question, you answer the question the same way two or three times. Sometimes, I think it is a different form of “Groundhog Day”. It is the repeating of repeating that repeats over and over again. It is hard on a sane person’s sanity because you know  reality, but they are oblivious, so you are always struggling to right something that is always upside down. There is no way to describe what my husband’s brother lives with on a daily basis.

Most times, Brother spends his time trying to discover what has been done during the day and undoing it the next day. That is the “norm”. The disease is sneaky in that it hides behind a “normal” facade. By the time you realize that something is wrong, all of the poor judgements fall on top of them and it is a mountain that began as a molehill. Or, at least that is the way it happened in this family.

By the time that we realized that there was something terribly wrong, Mom and Dad had mounted a credit card debt that is over $23,000 with 33 percent interest, fraudulent financing on the mortgage and 23 new life insurance policies on Mom that were taken out over a 6 month period of time. It became very clear that something was wrong when their checking account was in the red to the tune of $1200 because all of the life insurances were set up on automatic withdrawal. By the time that Mom and Dad spent the money by going to the grocery store (going to the grocery happened at a rate of 3 times daily and they purchased the same things so there are mulitple bottles of steak sauce,  boxes of cereal, gallons of ice cream, and still no food in the house) and eating every meal out because Mom forgot how to cook. The account was drained and the overdraft fees amounted to hundreds of dollars. Dad also forgot to pay the property taxes and file for tax exemptions so the house payment raised $200. The liteny of financial messes was like trying to unravel a plate of spagetti, no one knew where it began and where it ended.

That was two years ago. Now, Brother has closed out all of the new life insurance policies, consolidated most all of the banking accounts and he has Power Of Attorney so he can file taxes and talk to the credit card sharks, but it does little to try to save them financially. They are most likely going to have to file bankruptcy. How sad to live a lifetime and to have everything gone. But the time has come that Brother cannot live with them because he still has children at home and the children are being sacrificed on the alter of dementia. It has to stop and it has to stop now.

Mom had a “break” or an “episode” the week of Christmas where she forgot how to eat with a fork or spoon. She woke up in the middle of the night in a state of hysteria. She did not recognize her son, Brother, and she was calling for her mother. (Her mother had been dead for over 30 years) She lost control of her bowel and bladder. They called an ambulance and admitted her into the local hospital.

It seems that a Physician’s Assistant had prescribed synthetic morphine patches to help with back pain. The patches seemed to “run out” and Dad would put new ones on early. Brother said that he had taken her off of the patches. This threw her into withdrawal which pre empted this break. If she didn’t come out of this, she was going to have to go to a nursing facility.

When Brother explained this to Dad, he just stared into space. He adopted this “deer in the headlights look” and did not acknowledge that he understood what Brother had said. We learned later that when Mom said that she wanted to go home for Christmas, Dad told her that she was going to a nursing home. It became clear that Dad understands, he wasn’t in agreement with what was said at the time.

It seemed a “miracle” when a few hours later, Mom came back from wherever she was and was oriented to day and time. (This was remarkable because she wasn’t lucid on a normal basis) It was clear that Brother had to bring her home.

My husband has mourned his parents being gone for the past few years. It would have been easier if they had passed away instead of seeing them behave in a way that made him feel as if he never existed. There were days that they understood that he had cancer and it was progressing and then there were days they seemed to think that it was Brother who had cancer. (Brother has cancer of the prostate. It is Husband who has the terminal stage of cancer) I think that it is worse to have them here and yet they are not here. In their minds, they have only room for each other and no one else exists. It is hard to loose your parents to the shadows.

We made the two hour drive. Not because we wanted to but because we believed that this was the last Christmas. It may be the last one with my husband on this earth. It definately was the last Christmas with the parents in their home and not in some sort of facility. It was a strange Christmas.

The trip was hard on my husband. Being around the parents was hard. Three days was more than enough time for everyone’s nerves. It definately is all that Brother can deal with. He has taken all that he can and he cannot take anymore. It was a Christmas that we will remember as a sad and pitiful shadow of what Christmas once was in this family.

If there is a next Christmas with all of the family still intact on this earth, who will know that it is any different than the last when those that you love live in the Shadows. They are lost to us and we are lost to them. It isn’t at all like the movie “Notebook”. It is one more sorrow as we face the uncertain future.

What will 2008 bring but more Shadows? It seems rather thick in its darkenss sometimes, but scripture says that as long as it is called Today that there is hope for salvation. As long as it is called Today there is hope for life and that is what we are holding onto for next year, Today.

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Shadowy Dreams of the Sunset

 “Wispy dreams that come in the night are vaporous shadows that follow in the daylight.”

This dream has lurked in my memory for twenty plus years and with my husband’s diagnosis of cancer, it became my reality. The dream stopped being elusive when the doctor repeatedly said, ” I am sorry. I am sorry. I am so so sorry”.  The doctor was expressing his regret when he informed my husband of the diagnosis. Cancer. Finally,  I understood this dream.

The moment wasn’t an epiphany, or an “aha”, it was a moment of “knowing”. It was knowing something was tangible, a reality that it is yet to be. This knowing was as real to me as knowing my name or that I have a son. In that moment, this vapor of a dream changed from wisp to weight. 

This dream was the beginning of my relationship with my husband. It was the second stage to a romance that was begun 20 years before. In the years before he physically walked in the door of my work, he came to me in the dream. I always knew that it was a warning. A warning that he would be leaving me.  It foretold my future with him.

I’ve tried to write about this dream many times and, each time, I could not encapsulate the imagery in this black and white reality. It was like trying to catch a moonbeam or a bit of starlight, a mystery,a vapor. This vapor, this wisp of smoke was foreshadowing  the sunset of days.  Unless powerful prayers impact the Heart of God, this cancer is the sunset in which he walks; he is leaving and I cannot follow, at least not now….

It reveals the desperate soul of my husband and it speaks of his deepest desire. It exposes his futility and my naked, bare love for him. It also foretells the price that I will pay for this love. Unless the power of prayer alters the outcome, for this love, I will be left destitute in all ways, emotionally, spiritually and financially.

If I had this warning, why did I choose to enter into his life or allow him to enter into mine? My heart would let me do nothing less than love him.

In the midst of all of this pain, I have been blessed. I know of many who live a lifetime and  never loved or known love like this, but I was given a second chance. I took it. 

Once, I asked my husband if it was better to love or to be loved? I think most would answer that it is better to be loved. I have known love from others.  I did not return their love and I would have been a parasite to accept them for loving me. I could not lover return their. But, with this man, this time around, I wanted to love. I wanted to give totally, 100 percent, to love with total abandonment. He is and always will be the only man that I can love like that…. When he came back in to my life, how could I turn away? I couldn’t. So, knowing the end from the beginning, I entered this love with a choice. Even if he didn’t love me as much as I loved him, I chose to love him and be satisfied.  I chose this in spite of this warning. This is my dream.

The Sunset Dream

I am observing a man and a woman inside a glass dome like structure. A dome is the best and only way that I can describe this enclosure because it was unlike any thing with which I was familiar. In this dream, I was  observing what transpired with in the dome from a higher position, as if from a tree… 

In the dome, the man ( my future husband) was desperately pleading with a woman without a face. Even without a face, I could see that she was very upset and angry with him.  He, on the other hand, was on his knees, begging and pleading with her to love him. Standing with her back to him and refusing to face him, he continued to declare his love. The intensity of his pain and desparation was palatable.

In exasperation, he got up from his knees and looked up at me. When he realized it was me, he looked relieved and he started toward me and he hurriedly came outside of this dome. By the look on his face, I had hope that he had realized that I loved him and it was me who truly loved him. With these realizations, I believed that he was leaving this faceless woman and making his way to me.

As he approached me, I was hoping to hear him him to say that he realized that he loved me; instead, he asked me for $100.00. A hundred dollars was all that I had in the world and I remembered thinking that if I surrendered it, ithis act of selflessness would show him the depth of my love for him.  It was my total value, my worth, it was everything that I was. With joy in my heart, I gave all that I had to him.

Much to my surprise, he took the money from me and I watched him re enter the dome. Once he was inside the dome, he offered my worth to the angry faceless woman. My heart was shattered into a million tiny pieces. I felt as though I was scattered to the four winds. Each tiny piece of me was lying alone without hope or value.

I continued to watch him go down on his knees, once again, pleading for her to take my gift as a symbol of his love. He emptied himself of  what was mine and gave it to someone who was so undeserving of his love and my worth.

In the next moment, the woman turned and walked away from him and left the dome. He followed her with his arms outstretched begging her to take everything. I was being sacrificed so that he could love her completely, yet his love was given without it being wanted or returned. I continued to hope that he would somehow realize that all of this was futile and that she was not going to love him. Instead, I watched him continue this sad dance of love as they began to walk downward on a rough and rocky path.  

I followed them. As the day began to slip away, I noticed that the path was leading into the sunset. The last rays of the light were slipping under this horizon to where I could not follow them any longer. They were walking further into the sunset.  I stood there watching them grow smaller and smaller to the point that they almost disapeared from view. 

I stood there watching my hope of being loved by him fading into the glooming and I could no longer watch. With my heart broken and feeling a great emptiness I had to turn from this sunset and go back from where I had been….he was forever gone.

I woke up.27715869e1.jpg

Now, I realize that we are at the sunset of his life. It isn’t a faceless woman with whom he is leaving. It is the face of Cancer with which he walks. How can I compete with this disease? I know that it isn’t cancer that he loves. It was the woman before me who he wanted. He chose to love an impossibility. It was her mental illness that was a glass dome. Bi polar disorder prevented her from loving anyone.

What he received in spite of his love was anger, bitterness and failure. All of these became the cornerstone for his cancer. (I have medical research articles that substantiate this theory. The article states that cancer co relates to people who have terrible emotional shocks or wounds.)

When my husband returned to me, he was badly wounded. He was so angry and full of hatred for women I was afraid that he would hurt me or any woman until they were as full of pain, anger and bitterness as he was. Yet, I willing gave all I that had in every way to him. I loved him. I always loved him.

Regardless of his prayers for forgiveness and his changing heart( Love truly a heart; not only my love. He came to know God’s love and that changes every mans heart.) No matter with all of the changes, the cancer refuses to stop growing. Cancer continues to fill every physical void that is in his body with its mutinous poison. Just like the bitterness in a heart, cancer consumes a body.

He has done all that he knows to do. Both, spiritually and emotionally, there is nothing more to do. There are no more apologies to be made. There are no more sins of which to repent. He has done all that he can do and yet, the cancer grows.

I just stand here, watching him wrestle with this monster and I am helpless because I have given all that I am and all that I have….The sunset beckons and I can not follow him.

Because of the dream, I know that prayer and a miracle are the only things that can divert his path. It is inevitable. As I did in the dream, I will to stand as if to keep watch. 

Scripture says “After you do all that you can, then you stand.” (my paraphrase). I am still standing. I haven’t turned away; I can’t.

I believe that God gives us dreams and they can foretell what will be. I also believe that prayer can alter these events should it be God’s perfect will. It is in the prayers that Hope lives. That is why I must pray. But, like Jesus prayed in surrender to His Father, I too must say, “Not my will, but Yours be done.”01d077c531.jpg

Shadows of Christmas Past…

My husband is doing better than he was. His color is better today than it has been all week. He had a rough night last night. He was tossing and turning, talking in his sleep and moaning. I woke him up to give him his pain medication. Sometimes, that is what he does when he is in pain.

Funny, how we are one. We have always been that way. He starts the sentence and I finish it. He looks at me and sees the look on my face, then he brings me all my “vices” which are chocolate or a coke….that his way of “making it all better”.  Without words, we know each other’s wants and wishes.  In most everything, we are one. I believe that is the true meaning of marriage. “What God has put together, let no one take apart.” Not even cancer….in fact, cancer makes us more one than ever before. That is why that no “one” has cancer. It effects the whole family through the love, the fear, the grief and the pain, it binds us together with cancer. But, I digress…

The other day, we were going into WalMart for something and as usual, he couldn’t go by the bell ringer without digging the change out of his pocket and dropping it into the kettle. I thought to myself,  “The lint that is in there won’t spend very well. I hope they know that it is the thought that counts…”*smile*

He is that kind of man. He would seem to those who don’t know him well to be a rough and tough kind of “biker dude”, but he is this tough kind of guy with a soft center. He betrays his imagine by the “pocket change” kind of things. He is the guy who would stop and help you with that flat tire as you struggle with it on the side of the road. He would see that elderly man struggle with carrying the groceries into the house and stop to carrying them inside for him. He may like his Harley, but he also takes those hands that can “feather” a throttle and place them on his bass violin and make the sweet base tones for a classical piece of music that makes a balance of rich, deep tones to resonate with the higher voice of the violin. ….In many ways, he is an enigma. He is a man, like David, the giant slayer and king,  a man after God’s own heart…..

My husband tells me of the Christmas Eves before me when he was freshly divorced for the second time. Christmas Eve was so empty without his children and a home that he would dress up in his Uncle Dave’s Santa Claus suit, whiten his full beard and show up at his Aunt’s and Uncle’s Christmas Eve parties and “play Santa”. It was his way of dispelling the aching lonliness he was feeling. He was living with his parents and the holidays are not the same when you don’t have your own home at Christmas. It is the joy on the face of the children at Christmas that makes it Christmas for him. That is a man who has a soft heart.

Of course, he had his children on Christmas Day, but it is the magic of Christmas Eve that he enjoys the most. Those Christmas Eve’s when we were fortunate to have his children and my son’s family together are the bright memories of our Christmas’.

My favorite Christmas memories are the ones when the kids were old enough to drive. They were old enough to come and go where they wanted and it was a big relief to be past the days where my husband went one direction and I went in the opposite direction to pick up kids. Then when we would reach our home, we tranferred them into one vehicle and drove another two hours to go to his folks home for “Christmas”. Those years were tiring and I had little joy at Christmas. It also tore my heart because I was leaving my son at his father’s on Christmas Eve, but when he wanted to come home, it was an empty house to which he returned. That was just not acceptable to me as a mother. It made him feel that he was second place and it was up to me to correct it. Finally, after a few years of this maddness, I had enough. I decided it was better to be the “evil stepmother” and put my foot down. I told all who needed to know that I was no longer going to drive hours and hours and have absolutely no Christmas Spirit when I got home. I told my husband that we had a lovely home and it was our home where our children should come instead their grandparent’s home. It was a home for all of our children and my son was being short changed by not having his mother at her own home when he wanted to come there for Christmas…that was the end of the never ending miles at Christmas.

Of course, I was the evil daughter in law and conflicts occurred. Even the past few years were conflicted by my in laws, so it was inevitible, because I had enough. Those years only improved when the kids could drive to our house on Christmas Eve. They were at their mother’s parent’s home for Christmas Eve and they drove the twenty miles south. My son and daughter in law were in from California and our home was the scheduled stop on their itinery. About 10 PM, all of the kids, except for one, came rolling in the door. Even though they had just left a big meal, they were starving for the Christmas junk food that was part of our Christmas. There was cheeseballs and crackers, sweets of all kinds, popcorn and plenty of their favorites.

They started to eat, play cards, watch TV. Somewhere in there, gifts were opened and they would go back to the TV, computer, cards. There was music, laughter, conversation and let us not forget the “Egg Nog”. It was great. At around 2 AM, I excused myself and my husband and I went back to our room with a big smile on our face…it was wonderful.

The next morning, my husband would fix biscuits and gravy and away they would go out the door to the next stop on their schedule. My son and his wife were on their way to her father’s house. The house was quiet and we were filled with Christmas joy….

Unfortuanately, we cannot return to those years. As I think on those times, we had no idea that cancer was there with us on those Christmas’. I wonder if those memories would have been so sweet if we were knowing that it was there all along. In many ways, we were blessed by not knowing about his cancer. Those wonderful times would have been in the shadow of cancer and the joy would not have been so complete…..We were blessed to be ignorant.

This Christmas, the cancer is in center stage and it doesn’t have a right to rob him or the family of the joy that is Christmas. It is up to us whether we let it be the thief. I don’t think that I will let us rob us of this Christmas….no shadows on this one.

Joy to the World, our Lord has come……

Adding to the Shadows part 3

The journey has been fraught with many difficulties, but the obstacles that I am encountering now are the worst to date. I have had times of anger and frustration with insurances, billing departments and collection agencies yet I have not experienced the draining of internal fortitude that I had this afternoon.

Every milestone that my husband has reached has had a down side. He has reached a major milestone in the fact that he has survived long enough to be on Medicare. Many may not know that it is a great accomplishment to reach that kind of eligibility, but with a diagnosis of 4th stage/terminal, it is. He has outlived the prognosis of the doctors, which were 6 month to 2 years. He has survived 2 years and 4 months. But, along with survival comes eligibility of Medicare and the discontinuance of COBRA with his insurance company through his employer and it sucks.

The cost of COBRA was 1/4 th of his disability benefit. That is costly, yet it covered a $132,000 surgery plus many tests, hospital stays and medicines. Out of his 2 million dollar cap, he has 1.5 million left.  Overall, it has been fairly decent in consideration what 20 percent of that amount would have been….that is what Medicare would have paid and we would have had to pay the rest. That is what I am looking at now. 20 percent of whatever the cost of the treatment. I know that Medicare has negotiated the lowest cost of any treatment, but there is absolutely nothing that isn’t costly with cancer.

I spent this afternoon trying to find a supplemental insurance policy that would help with the outstanding costs that medicare leaves and I have discovered that in our wonderful state of Indiana, no one offers a supplemental plan if you are under the age of 65. That stinks. I talked to people from Texas to the East Coast and they have been consistent with their information, Indiana does not offer supplemental Medicare policies. I have found one possibility, but it is a long shot.

I called a friend in the insurance business this afternoon to see if she had any inside information and she found one company, but the premium was untouchable. We cannot afford to pay the premium. So again, we are on this merry-go-round where we are damned if we do, and damned if we don’t….I finally just cried.

Cried because of the senselessness of this business. No one wants the risk. That is a very true statement. We didn’t want the risk either. At one time, we would have had little worries because we  had adequate insurances in every area, but that disappeared along with the businesses that we owned. We have nothing and we are left with nothing…it is a very dark shadow and it makes me angry that the few things that make him feel good and gives him quality to this meager life he has left is going to be too costly to continue.

I suppose this is just another thing to add to the category of UNFAIR…but life isn’t fair. It is hard. There is no need to rail against the wind, the dark of the shadows or the storms….it just wears you out and that is what I am feeling, worn out….totally worn.

I always thought of myself as a resourceful person and I think that I was at one time, but every resource has its limit and I am coming close to my limit. Today, I spent 7 hours on the phone and to top the day off, I received a bill from a pharmacy to which we never submitted a prescription. It was fitting for this day. How ironic! We are billed for something that we never received and yet, it was so appropriate. This whole experience in the medical world has been about receiving nothing that has benefited his survival.

He has underwent so many things that have left him in pain and anguish only to loose his life all the same. I know that it has helped to prolong his life, but in the end, it is the same as the bill for something we didn’t receive….We are paying for his life and he will still loose it….

There are times I become so weary of this fight!!! I just want to sit down and not get up for a long time. But, that isn’t reality. I think someone described bravery of being scared and going into the fight anyway. I don’t think that I am brave, but it is how I feel sometimes…afraid, but going into the fight anyway. That is the only option left to anyone with cancer.

You have to go into a loosing battle and fight with the understanding that you are not going to win. It doesn’t matter if you don’t want the fight, or that you don’t have a weapon to fight with or any security if you fight and win the battle because the war is lost. It feels very hopeless.

And then I feel angry…just plain pissed off. I am angry at the healthcare system, the hospital system and angry at the fact that this is my life. I waited a long time for him to be in my life and now, he is leaving.

That is this moment. Tomorrow, I will pick up the phone and start all over again. I don’t know what else to do. I will continue to look for a supplemental insurance that we can afford and hope that there is one who will be allowed to operate in Indiana….

I suppose, after a day like today, you get an appreciation for Don Quixote and his impossible dream….

Weeping In The Shadows

As he came in from the porch, I saw the redness of his eyes. When I asked why he was crying, at first, he said that his nose was running. He knew when he said that I wasn’t going to settle for that explanation. I asked him what was he thinking about. He said that he was crying because of the holidays.

Even though I knew why he was crying over the holidays, I still asked him. He said that he thought that these would be his last. I asked him if this was his fear or was this what he felt. He said that he felt he was seeing his last Christmas. My heart stopped. I tried not to show my fear, but it is in my eyes. I held him as he cried. He was confirming what I am seeing on a daily basis. Not only is it a season for Christmas, but it will be a season for good byes.

When I was in nursing, I learned to listen to my patients. If you will listen to them, they can tell you more than any diagnositic test or procedure. They always know when their time is closing and that is why I asked him if this was a fear or a feeling. In his tears, he can feel that tumors growing and the medical relm has nothing left to offer. He also knows that God has chosen to not grant him more time on this earth. At least, that is what I believe.

I asked him what he wanted to do. If this was his last Christmas, what does he want to do to celebrate? He didn’t say anything, but I believe what he would want is to role back the hands of time  when the kids would come in the door on Christmas Eve and they would stay up all night playing games, watching TV and eating everything that wasn’t nailed down. Those were the best!!!! The kids were old enough to drive and go where they wanted to go . They had the freedom to come and go and they came in and made themselves at home…

In the morning, after a big breakfast, they would all head out to go to the next grandparents, parents or family members house. The house was always in a hush when the whirlwinds blew out the door. It was a good kind of quiet. Those were the best Christmases.

We can’t recreate those holidays. Everyone is scattered to the four winds. They have their own families and they have  hectic schedules with their comings and goings. We have those wonderful memories and we have one last chance to make one more memory. It will have to last us until we see him again in heaven. I don’t know how to make an eternal memory, do you?

In the light of the day, I will ask him to tell me in more detail just what he wants to do. This will be a meloncholoy Christmas. How do you make the last one the most precious one?

I have decided it is time to read a book to him that I have been reading. It is titled “In the Light of Eternity”. The author takes scriptures that speak of heaven and explores a more realistic view of what heaven is like. He writes that we will not be floating on clouds strumming harps like those fat cheribs that you see on greeting cards. Heaven has structure and purpose. More purpose there than here because we are in the Presence of the Light of the World.

I have not talked to him about these things because I believed that he wasn’t ready to look at that reality. After these comments, it is time. We have to look to the future. The one where he is there and I am here…..it is the future that I hoped would never come like this. I would have prefered to have it come when we were so old and wrinkled that we could not walk without tripping over our chins…*smile* but it isn’t going to be that way…..

This Christmas there will be tears and a sorrow that are unspoken but very tangible. It will be a true scacrifice of praise because he is leaving us and next year, he will be in heaven. We will be weeping in the shadows at Christmas of the First Noel without him…..

Reflections on the Shadows

On my last posting, I truly thought that my husband was in the hospital without a return home in sight. It was frightening to see him in such pain and to see the questions on the doctors faces. He was a complicated case before this last episode. During this crisis, it was clear that he became more complicated.

The details of this crisis is not unlike others that are facing the end of their journey with cancer. His metastatic cancer mimics late and last stages of ovarian cancer patients. The tumors grow to such a massive size that they crush internal organs. His tumors are sitting, literally, on top of his stomach and small bowel causing obstruction. But, that is not definitive as the cause of this last bout that landed him ICU.

Two days before the hospitalization, he began a new treatment of Xeloda and Avastin. The xeloda is a pill form of 5FU. The cost of this medication alone can land you in ICU with a coronary. It costs $2000/21days or a month supply. The Avastin is a drug that is to cut blood supply to the tumors. That is great, but it cuts blood supply to the bowel, skin etc.

The prevailing consensus is that there was a partial bowel blockage from the tumor and the Avastin/xeloda combination paralyzed the bowel completely. He had an Ilius. An ilius is when the bowel stops functioning and air and gastric fluids are retained in the upper GI. This causes distension and pain. That was the main focus. Two days later, he had both lobes of his lungs to collapse and then pneumonia set in. Oh, I forgot the pulmonary embolis. So to review he had…..

  1. partial bowel blockage
  2. ilius
  3. distention
  4. collapsed lower lobes, bilateral
  5. pneumonia
  6. pulmonary embolis

That should cover it unless there is something that they forgot to mention. That is quite a lot even for  a cancer patient to recover in about six days. In fact, it is quite remarkable that he recovered at all.

For the first 24/48 hours, I didn’t know if he was going to recover and neither did he. He became very angry at himself for trying this new treatment. He mentioned the day before he started the treatment that he had doubts as to whether he should to this treatment at all.  His anger was at himself, but he was taking it out on others around him, me included. After the second day out of ICU, I had enough and told him that it was alright to be angry at himself, but it wasn’t acceptable to be a crank with the staff or me. And it is alright to be upset and scared and frustrated and all of the things that come with feeling ill, but he needed to stop himself from being hard on the staff.

I reminded him that the people that work in the hospital start their career in healthcare because they have a very deep loving and caring heart toward the human race. Without this type of personality in mankind, it would be impossible for anyone to survive illness. Without love and compassion, there would be more of an attitude that lends itself toward, “Let them die and let God sort it out.” Cold, it would be very cold.

These people who are in healthcare have a very difficult job on a good day. They not only contend with sick and often irritable people, but they have to deal with insurance companies, hospital protocols, rules and regulations. These kind of concerns rob caregivers of the emotional fortitude that is necessary in giving good care. It is hard to see to the physical needs of sick people and then have to fight the “establishment” to insure that the patients receive the care they need and deserve. Many times, they must become the advocate for the patient….this is a difficult career.

I suppose I was speaking from my nursing experiences.  I cared for some lovely people who were still kind and caring when they were deathly ill. They were selfless and thoughtful. But then, there were the other patients. These patients seemed to think that they were in a hotel and the nursing staff was room service.

On extremely bad days, the patients would be demanding, the doctors were demanding, the hospital administration was demanding and by the end of your shift, you felt like there wasn’t anything left for you to give. So, your family was robbed of the best of you when you returned home. Usually, those were the days that the kids were demanding and you took it out on your spouse because they wanted something too.

It is a hard job and unfortunately, fewer people are choosing healthcare. The shortages in staff add to the load of those who are doing the job. You are doing not only your responsibilities, but many times, you are doing the job of another person as well. So many in the healthcare world are burning out. Especially, when the general public forget the basic courtesies. A “please” and “thank you” goes a long way on those difficult days.

I know that my husband can become very demanding especially when he is fearful or when the professionals forget to explain procedures. He isn’t the kind of person that you can give an explanation by glossing over the topic and then proceed. He will resist you. That is why I try to be with him. It isn’t just for his benefit, but it is for those who care for him as well. If the ER doctor would have waited until I returned, my husband would have not become so hostile and pulled out the tubes that were just placed. Maybe they thought that they explained things adequately. Most likely, it was a the result of many factors. My husband wasn’t getting enough oxygen to his brain. The last time that happened, he hallucinated and he thought that his nurse, a male nurse, was a drug dealer and that this man was trying to hurt him. It was another time when my husband’s nurse was very glad to see me come through the door.

Trust is also a factor that is overlooked sometimes. Many people have a huge amount of hurt in their lives and trusting other people isn’t something that they can do. Gone are the days when people respected anyone in authority over them. In my parent’s generation, the doctor was never questioned or challenged. If the doctor said it, then it was law and gospel. Today, no one trusts everyone fully. It is also true that no one should ever turn their health decisions over to a doctor. Blind trust should not be given either. There needs to be a balance. If you do not have a basic trust in your doctor, find another one. Every one needs to educate themselves about their illnesses and their treatment. After all, it is YOUR life. Be “picky” about who you turn your life over to…after all, these are just educated people and not “god”. They are due respect for their calling, but everyone needs respect. Life goes a long way down a easy road when there is respect between patient and doctor.

Trust is hard for my husband. He would like to be able to trust more, but he has been so hurt by people and life in general that he doesn’t trust easy. I think that the ER doctor was unknown to him and he did not understand nor did he trust. It was just a bad situation for everyone. But, it is over and we are on stable ground for now, this day, this hour….that is all we can deal with…. the now.

Strange Shadows?

Bizarre is the best term for this encounter. It was the last thing that I thought I would experience at that particular place and time. I am left with questions that have no answers, just more questions.

      These questions, so many are about me, about spiritual significance, about emotional and spiritual attachments; strange and bizarre questions about  strange and bizarre shadows or foreshadowing, They  just keep coming.

     All of these questions are based on the experience that I had one night at the hospital while my husband was in ICU. I had returned from home to spend the night with him.

He said that the nighttime was the hardest because in the darkness of night. In those shadows of the night, he questioned his salvation, his ability to survive this illness, or if he will go to heaven should he die.

      I asked him if he had all these thoughts during the day or at night. He said that he had them during the day, but they were worse at night. We decided it would help if I would stay with him at night.

      I returned to the hospital around 11 p.m. and as I was walking toward the automatic doors to the ER entrance, I noticed a woman sitting on a bench next to the doors. As I came closer, I noticed that this woman looked a lot like my husband’s second ex wife. This is the ex that has a certifiable diagnosis of bi polar disorder.

      This woman bears the responsibility for so many pains and sorrows in my husband’s life that she is the last person that he or I would want to see at this particular time. As I got closer, I still could not determine if it was she or not. Of course, if it was her, that would indicate that my husband’s daughter may be in the ER. That thought was disturbing.

     The woman was talking on her cell phone and as I got abreast of her, she gave me one of the most hateful looks that I ever received. The hateful look almost convinced me that it was the ex, but there still were doubts. So, when I got to the  front desk, I looked for a phone. When I located it,  I called the operator and asked for the room number of my husband’s daughter. Of course, there was no patient by that name and I was referred to the ER. I decided against calling there because that would cause me to make a decision as to whether to tell my husband that his daughter was in ER or not. I didn’t want to make that decision. Call me chicken or any other name, it was a responsibility that I didn’t want on my shoulders at that time under those circumstances, I went  up to the ICU. When I arrived in my husband’s room, I asked him to pray with me for protection. We prayed for the angels to come and be a hedge of protection around us and around his room.

      As strange as that sounds, it would make perfect sense if the history with the ex and our lives were known. It definitely is necessary to have protection from this woman and the effects she seems to carry with her…. I wish that I could explain it better than that, but those who know our experiences would know that praying for protection makes total sense.

     The question that came to my mind as I was trying to sort all of this was this, “What does this mean?” As soon as I realized that this question was underlying all of the deducing that I was doing about this woman’s identity, I stopped and realized how strange this question was. It was so removed from what was occuring in our lives this night. Why would I form such a question?

      On the heels of the realialzation that it was strange, I noted that I did not have the usual feelings of dread and in trepidation that usually accompanies being in the ex’s presence. I did not have the cold clamminess or nausea that are common when dealing with the ex or the daughter. Those physical expressions also accompany being in their presence. This was becoming more bizarre as I contemplated the totally situation.

      When I arrived in my husband’s room, I didn’t tell my husband about the woman on the bench. I decided that he didn’t need to stress over whether his daughter may have been in the ER or whether one of his granddaughter’s were there. Even though he has never seen these children, he would have been upset to think that they were that close and he could not see them or their mother. Why add more stress to his state of vulnerability.

      How peculiar to have an encounter like this at that place and at that time! What does it mean?

      There are so many theories as to the cause of cancer. One of those theories is that stress, prolonged hopelessness, post trauma sets the body up for cell mutation and that stress plays a huge part in someone contracting cancer. If that theory holds water, it definitely would lay blame at the feet of the ex wife and daughter. To give you an idea of the stresses, I will list a few of the most stressful:

1.      Being threatened with a knife by your wife.

2.      Sleeping with a gun under your pillow because your wife pulled a butcher knife on you before you went to bed.

3.      Hearing that if a divorce happened that you would never see your daughter again.

4.      Having all of the outstanding marriage debt made as your own personal debt

5.      Declaring bankruptcy

6.      Loosing your job because of all of the many and frequent court hearings

7.      Having the red dot from a laser scope appear over your heart when you came to pick up your daughter

8.      Being hit in the head with the stock of a rifle when you came to pick up your daughter

      That was experienced in a 24-month period of time…. So many more stresses followed over the next 10 years. Twenty years later, he still pays child support taken from his disability check…. injustice lives and finds a home inside his heart and mind.

      I suppose that, in my mind, I find the ex wife responsible for the cancer that lives in his body. Could it be that she represents death, hate, anger etc in his life? Is her presence the symbol or the shadow, forshadowling of his death? These are just a sample of what went through my mind after this incident. “What does this mean?”, still rings in my ears.

 

      How strange are the shadows of night! How great is the torment. of these shadows that are devoid of all light…Strange are the shadows that grow in doubt. Strange and bizarre are their account.

      What does it mean? Who can say? They are strange all the same.

He Did Not Leave Me in the Shadows

My last post was written on the night that my husband was admitted to ICU and no one, not the doctors, nurses absolutely no one knew if he was ever leaving that hospital and coming home with me.

He was so sick and in so much pain that it frightened both of us. He was angry because they poked him and missed the jugular vein in his neck. He didn’t really want to stay in the hospital that night or any other night for that matter.

After the botched job in trying to anchor a pic line, he began to pull out every tube that they had just put in. He was so angry and he told them all that he was going home. By the time that I got back to the hospital from collecting things from the house, he was trying to get his clothes on and he was leaving. No one was going to stop him. The doctor and nurse that were the focus of his rage had the “dear in the headlights look” because of his anger. It was touch and go there for a while because he was determind to go home.

At first, I wasn’t too sure if I was going to be able to persuade him to stay. I knew that I didn’t have a lot of time to get him to calm down. The only thing that I could think of that was going to get and keep his attention was his desire to see his daughter’s baby enter this world (The little guy is coming in the spring). That is the only thing that I knew without a doubt that would capture his attention long enough for me to reason with him.

That is what I did. I asked him if he wanted to be here to look into the face of that wonderful child and he calmed down and cooperated with the staff. I also explained that I didn’t have the drugs or the equipment that he needed at home (his O2 saturation was 88/89). I told him that I could not control the pain with the medicines that I had. The pain meds that we had at home didn’t even touch the pain.

By the time he was admitted into the ICUnit, he had quieted down and it demonstrates the strong desire he has to live and see that new grandson. In many ways, that grandchild saved his life. What an angel!!!

All total, he was in the hospital during the week of Thanksgiving. We gave God thanks for my husband’s recovery. We gave thanks that he did not leave this earth just yet. We thanked God for the hope that we felt and that we still feel.

His diagnosis read like a page out of the oncology section of a text book. He was diagnosed with the following

  1. ilius
  2. partial bowel obstruction
  3. ? pulmonary embolis
  4. atelexsises of both lower lobes of the lung
  5. pnuemonia in both lungs
  6. intractible abdominal pain

I think that covers it. And, the amazing part is that many didn’t think that he was coming home. I am sorry to say that I was one of them. I think that it is my fear of the unknown that is always under my consciousness. This fear causes me to not believe that he will come out of this trail and overcome the disease.

Oh, Lord, I believe, Help my unbelief….And thank you that You answer prayers even when I can’t believe for the answer. Thank you that You can and do work miracles in the face of those who are helpless in their doubt…..

Thank you, Lord for a great Thanksgiving….May I always be grateful for Who You Are more than for What You Have Done…..Thank You for showing my husband and I mercy and love in the midst of our fear. Thank you for hearing my prayers when I could pray. And Lord, bless those who were faithful to pray for him at that time and for the ones who pray for him all the time. Your loving kindness knows no bounds and I thank you that You love us. You are too kind to be so cruel.