It’s Gonna Be Worth It

The Video says it for me….I can’t add much to what the song says.

Everyday, as I, in fear and trembling, leave the sacturary of my home to face new people with serious illnesses, it is this song that comes to my mind.

When I am so tired that I don’t know if I am going to be able to force myself to get into that old car and drive an hour to my first stop, I have to recall that “It’s Gonna Be Worth It”.

When I look into the faces of children and into the faces of the aged, my heart breaks for them and the betrayal of their bodies that bind them into a shell of the life that they once knew, I hear the melody and words that says, ” I don’t understand Your ways, but I give you my song, give You all of my praise…”

I especially don’t understand the pressure cooker of events that seem to befall me as I deal with the greatest loss my heart, mind and soul has ever known. I just know that I must not fail to live. If I fail, then who would take my place to tell of this man who was taken too soon from those who loved him.

But, most of all, there is only one way that I know that I can survive this crushing pain that consumes me body, mind, and soul. It is through my faith that I look past the hurt of my heart and cry out to my Lord…

I especially identify with the lyrics that says that He is using my pain to pull me closer into His ways….and if I must walk the rest of this life alone, I want to see His face. I want to see the Mysteries that my husband now knows.

He would quote the verse that says, “I would see Jesus”.

That was his goal. He wrote in one of his prayers that He wanted NOTHING between him and his Lord…I saw with my own eyes the smile on his face when he left this earth. The only thought I had was that he must have just seen Jesus…

I would see Jesus and I shall give him my “song” and all of my praise…because He is pulling me closer and bearing my pain…

For today, that is all that I need. I no longer live in my tomorrows because my days are full of bringing a little hope to those who are hurting in ways that my heart can understand. It is my hope that I am a “light” into their world and that they are God’s light in mine…

So as my weary heart, soul and body cries out in pain, I play this song and remind myself that Heaven is a little sweeter because my husband is there, but more than that, Heaven is my Hope and seeing Jesus face is worth it all…

In that I have absolutely no doubt….

 

 

 

 

 

 

 

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“Thank You, Lord For Another Beautiful Morning”

I found this post this morning. It was dated in June and I don’t know why I failed to post it. I decided to post it now. It is a reflection of the man, the mature and completed man, that came out from all of the troubled youth and adult life that he led. It shows how the terminally ill come to value the next morning. He knew that he lived on borrowed time for the last 2 1/2 years…and he was so grateful for each day.

My husband is a morning person and I am not. He has always risen early for work, sometimes at 3 AM, so to take whatever load to its destination and to get back home in the early afternoon. He says that he feels his best when he first wakes up. How I envy that quality.

I am a “second shift” kind of person. I naturally wake around 8 AM, that is if I went to sleep before midnight. I like to take a hour or two to fully wake up and drink my several cups of coffee. I don’t like answering questions or making decisions until I feel that I am fully awake. By 10 AM, I am usually ready to start doing things around the house and get my day started. That is my natural biorhythm.

When I hear my husband up and about, I make myself get up and check on him. I want to know if he is up because he wants to be or if he is up because there is something that isn’t quite right. After I determine that he is OK, sometimes, I lay back down. It is then when I hear his morning “talk” with the Lord.

Usually, the first things he says out loud is, “Good Morning, Lord. Thank you for another beautiful morning. Thank you for letting me stay for another day. I am yours, you know and I am waiting to see Your Hand to save my life, but if it isn’t to be, it is OK….”

There is more, but I feel that I am eavesdropping on a very private conversation and I try not to listen. Sometimes, I go back to sleep or then the other times, I hear his prayer for his children, grandchildren, parents, and for me.

The tears roll down my face as I think back to the days when I didn’t have a husband who prayed for me. My first husband was at best an agnostic and at worst, an atheist. I had prayed many years for this man to come to know that there was a kind and loving God who knew his name.

When the day came that my first husband wanted to leave me after 17 years, I finally let him go. One of the main reasons was that I knew that he would never share my faith or my love for God.

Three years later, my present husband came into my life. As a son of a minister, there was no doubt as to his faith. He didn’t always practice what he had learned at his grandmother’s knee (she also was a minister and a female Evangelist). He had his rebelliousness, but there was no doubt that he knew that there was a God.

As I hear his prayer, I am so grateful for a husband who prays for me. Many times, we have dropped everything to hold each other and pray for the situation that we were in at the time. Many times we have laid in bed and talked about God and about His Word. We have laid in bed and sang the old old hymns blending our voices into one voice lifting the melody heavenward.

We sang together when we were teenagers. The tember of our voices complimented each other beautifully and it was the harmony that was felt between us that made our voices as one. That has been the nature of our relationship. Harmony.

This morning, I join him in his prayer of Thanksgiving for another day, another beautiful morning with the sounds of summer as our personal symphony. I am so grateful that he is still here with me. I know that whatever this day brings, it has been ordained by Heaven and in that knowledge, there is peace.

So, I echo, “Thank You, Father, for another beautiful Morning, for this day and for all that You have ordained in our life. Thank You for all that surrounds us and is for us. May we always be grateful for all that this day brings. For now and always, let us give thanks….”

In light of what I am about to write regarding his early teen years and his young adult life, I wanted there to be a comparison of the “finished product”, of the man that he became before he died. Like many who have many talents, his path in this life was a difficult one. But, in the end, he did find peace, joy and love…and so did I.

Finding this draft of a post again brought tears over the loss of a man who prayed for me daily. I miss sharing our faith and praying for each other. I have to believe that he still prays for me. Now, the prayers that he offers for me, his children, grandchildren and all those he loves are in heavenly places….and, yes, I am still grateful for his life and for our life together and I do give “Thanks” for having him for the years that I did.

Shadows of Joshua

Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9 NIV

I found the beginning of this post. I do not know when I began it and I can’t recall what my train of thought was when I quoted this verse. I suppose it is one of those things that I was to find “after the fact” for encouragement.

The words of the verse are exactly what I needed to hear. My reality is that I know that I need  “strength and courage” at this very moment. I am walking into a new job and I am not familiar with all of the “ins and outs”. That always makes me nervous.

Tomorrow, I see my first clients and I am anxious to meet them. I hope that I like them and they like me. It is my adventure into home care and I know that I must be at my best as a nurse and as a person.

It is the words of the song that seems to impart the strength that I need to face my tomorrows. It is a reminder that there were never promises in this life that excluded disappointment, pain and even suffering. The promise has always been that we don’t have to face them alone, no matter how alone we feel. We are not….

 

The songs says everything that I want to say, but I think it does a better job…it is my comfort.

For those who aren’t into Gospel Music, here are the words to this song….

So many times I’ve questioned certain circumstances or things I could not understand.      And many times in trials, weakness blurs my vision and then my frustration gets so out of hand.      Oh, but its then, I am reminded that I’ve never been forsaken and I never had to stand one test alone. That’s when I look at all the victories and THE SPIRIT rises up in me and its through the Fire my weakness is made strong.

Chorus:    He never promised that the Cross would not get heavy and the Hill would not be hard to climb. He never offered our victories without fighting, but He said, “Help” would come in time. Just remember when your standing in the Valley of Decision and the Adversary says, “Give in…”, Just hold on. Our Lord will show up and He will take you through the Fire again…

Bridge:    I know within myself that I would surely perish. But if I trust the Hand of God, He’ll Shield the Flames again…again…

Chorus….       

 

These Are My Shadows

Long Shadows of Seasons

    Until July 1, 2008, I walked this journey with my husband. It was his Valley of the Shadow of Death. It was mine to share with him and I have no regrets that we walked the last steps together.

The moment that he left this world and entered into the arms of Glory, I began my own journey. I began trying to find my way out of these shared shadows. After yesterday’s melt down after filing for the Death Benefit, I realized more than ever that the Shadows that belonged to him are now my own to dwell or to dispel.

Even though, I understood in my mind that this journey is not over, but entering into a level that requires me to move alone through this Valley, I am finding the grief and the pain deepening. Each day, I awake to this trial and I don’t know if I have the strength to pull through this darkness.

After coming home from the Social Security office, I was struck by the visual illustration that was laying on that desk. As I viewed these documents, it was a sobering moment. I saw his worn and tatered Social Security card, my social security card, birth certificates, marriage license, death certificate, his and my drivers liscenses,  all of these document were silently stating that he had lived, loved and died. As a collage, these fragments of time, was illustrating how terribly short that our life together was.  Most of all, it brought my loss of future, my loss of happiness and my feeling of despair to a new level.

All of these pieces of paper were necessary so that the agent could certify that I was entitled to a death benefit.  It was the essence of his existence that was missing from the inanimate paper. It was a hollow ring of a bell that I heard in my head. It was the realization that it wasn’t just his life lying there in a scrambled pile, but it was my life there laying in random order. My birth certificate, my marriage liscense, my social security card, all of my life events were represented and presented with a death certificate. The full weight of understanding that my life was over as well.

Irish Cross

For the first time, I realized that life as I had known it died on July 1, 2008. All of my dreams that were once shared and were a part of my very fiber are as gone as he is. My future has been consumed with dark shadows and total emptiness.  I was born, I loved and married this man, and I remain as his beneficiary. That is all. That is my sum total at this moment.

I realized in that instant, that I had no hopes and no dreams that were outside of him. I had no secret desires of self promotion that excluded him. The shadows of my future lost was bearing hard against me.

My feeling of being so cheated and short changed was hitting me like a tital wave.  As statistics, I was so impacted by the lack of substance that our lives are. For a moment, I understood that I was as dead inside as this death certifcate states that he is physically.  My future, my hopes and dreams, my other self…all gone.  I was not prepared to endure this stark revelation and another deeper wave of grief blindsided me that at that very moment in that setting. I felt the panic rise inside me and I desperately wanted out of there.

It was a revelation that began to grow and it was overwhelming my soul. As I sat in that chair in a gray and cold cubicle,  I felt my life with my husband reduced and diminished to the point of extinction. It is over. It really is over…my dream of loving him and growing old with him is over.

I made it out of those sterile offices and got in my vehicle. For the first time in a long time, I wanted to drive to the nearest bar and get totally drunk. I wanted to make this pain stop…I hadn’t had that thought or desire for years. This was an old shadow that I thought that was eliminated, but apparantly not.

As I struggled with this strange need for obliteration, I decided that this temptation was one that I could not allow myself to bear alone. I needed help and I needed to call someone that understood what this kind of desire brings to a soul.

I called my brother in law. My husband’s brother has known this same temptation and I knew that I had to hear words from someone who knew how deep this desire goes and how dangerous it is to give into it.

At this darkest of moments, I recalled how my husband told me that he knew that I wanted to “check out” but I had to stay because my grandsons would be devastated and I told this to my husband’s brother. Until this very moment, I explained to him that I never had those thoughts on a conscience level . I knew that I was in deep, deep trouble.

The pain of the finality of all my hopes and dreams, the realization that this life as I knew and needed it to be was lost. Being reduced to a few pieces of paper was almost more than I could bear. I didn’t know how to make a life without his brother and I didn’t want another life without him in it….the pain was so deep and raw that I wanted to just go somewhere I didn’t feel it for a moment. I needed something to break this overpowering hurt that seems to build on a daily basis.

As I knew he would, his brother began to pray. He prayed for my release of this torment and he prayed that this terrible pain would pass as quickly as possible. He also reminded me that my husband has joined several people that are friends who have unexpectedly and recently passed. He reminded me that they are a part of that “great cloud of witness” that is talked about in Hebrews.

He said that he truly believed that all of those who love us and that we love are concerned with the things that take place with their loved ones. He reminded me that they see with a clear vision as we only see as in a “glass darkened”. His words began to fill what was so empty a few minutes before and I began to feel this terrible pain inside subside.

It isn’t that I didn’t expect this kind of emotional devastation. I knew that this loss would reduce and diminish me. But, no one can help you understand the potential pain that becomes a force in and of itself. It looms over your very existance to kill your heart, steal your future and destroy your soul. At this moment, my feelings were not only my shadows, but they were becoming my enemy. Ones that I could not allow to take control.

What frightens me more is that I know that this pain isn’t totally fulfilled. I know that I have yet to experience its total intensity.  I know this in my head and  it paralysis my heart with great fear.

These are my shadows. They are as dark a time as I have ever known. I know that I must make a new path but I am frozen here in this deep well of pain for whatever time is…

I have to learn to deal with its intensity. I have to also know when to not push and to rest.

I am in the deepest of forrest surrounded by dark and deadly obsticles that purpose my fall. I am so tired and weary of the emptiness yet, I realize that this is the beginning and there are many more trials ahead that are just as painful, if not more so, than my present pain.

 I am also afraid of the next

revelation.                                                                                                                   How much will my heart be able to endure. How long before I begin to find my way out of these shadows?

 I have no answers, just a slight glimmer of hope that has no source, but God, Himself.

Thou, Oh Lord, Are A Shield For Me

So far, things have been going in the same direction as was started on the day my husband died. It seems that it is not “when it rains, it pours” kind of thing. It feels like a 100 year flood type of scenario.

As I wrote in another post, my lawn tractor blew a head or something. I must buy a manual because my son, who was a helicopter mechanic in the Marines is at a loss as to what this engine is missing. He said that something wasn’t put back together correctly, so he needs a manual to try and find what was done when the old man that we bought the tractor from rebuilt the engine…no one knows and should we ask the old man, he may not remember…I don’t have a clue what the parts will cost after we find what is missing…it is a worry. In the mean time, the grass grows higher and higher…

This morning, I went to church. I didn’t feel like talking to many folks (most are family) so I purposefully went late and I was one of the first to leave when the dismissal was given.

When I got into my car, it refused to start. Now, I know that this car has had it self almost rebuilt one piece at a time. The last thing that was changed out was the starter. All it would do is click…that is the sound that a celinoid makes when it is refusing or unable to engage.

 Because it didn’t “zing”, I knew that the Bendix in the starter wasn’t the problem…it was acting like it was the celinoid wasn’t able to unengaged or  it was stuck on the flywheel. It didn’t matter.  It is the starter.

As I sat there turning the ignition key and listening to the useless clicks, I remembered how difficult it was for my husband to put this starter on in April. My husband was trying to prevent what was occuring at this very moment. The tears started  to well up and I told them to “dry it up” because people’s pity is more than I can bear right now.

So as in all things refurbished, something has decided not to perform. One of my many cousins walked over and asked what was wrong. I asked him which part of the car did he suggest that I kick first…he smiled and said, “pick one”. No help.

I knew that when the celinoid gets stuck, you can tap/hit it and sometimes that will make it unstick, so one of the congregationers went to his truck and got a balpine hammer. Both my cousin and this kind man were trying to find a way to get to the hammer on the starter, but that wasn’t easy due to the location of the starter in the engine compartment.  Getting a good swing and hit wasn’t going to be easy… 

Almost everyone that was in the parking lot had left except us. I was almost resigned that someone was going to have to take me home when I said, ” Hit it again, guys.” That time, the starter engaged the engine roared to life. I was so relieved. I made a mental note to myself. “Don’t leave home without a hammer and jumper cables.”

I don’t know how long this thing is going to act up, but I can’t stop driving this car. The other vehicle is a diesel Ford F-250 pickup truck. It has the wrong gears in it for fuel mileage and I can’t afford $4.73/gallon. That is the price for diesel fuel today. Earlier in the week, it was over $5.00/gallon….without income, these vehicles are going to leave me worse off than I am already…buying anything newer is out of the question. Cancer has destroyed any ability for me to have credit. Besides, I don’t need a payment of any sort at this moment.

As I was mulling all of this worry, stress and concern in my mind, a song came into my head. I didn’t recognize it at first, but the melody became so strong, I started to hum it…then I stopped and thought to myself, “What is that song????”.

When the I got to the chorus of the song, I began singing the words..It was a song from the Brooklynn Tabernacle Choir CD that my husband and I listened to a lot…the words are something like this….it is based on Psalms 3:3…

“Many are they increased who trouble me.  Many are they who rise up against me.

Many are saying of me, “There is not help for you in God”

But, Thou, oh Lord are a Shield for me, my glory and the Lifter of my head.

I cry unto the Lord with my voice and He heard me out of His Holy Hill.

I laid me down and slept; I awaked for the Lord sustained me…

 But, Thou, oh Lord, are a Shield for me, the glory and the Lifter of my head…..”

The melody of the song is thrilling and somehow, the words have infiltrated that emptiness that seemed to  attach itself to my every waking moments. I don’t have a clue as to how all of these troubles that are increased against me will be resolved.  I don’t know how I will overcome this terrible hole that is in my soul. The “wheres”  and the “whys” shall remain unanswered. But, at this moment, I know that I am being sustained by my Heavenly Father who hears my heart’s cry.

There is a stirring inside of my being that tells me not to worry about the loss of security that my husband’s passing  placed in my heart. I only need to remember that it is ” The Lord God Almighty that is my Shield, my Glory, and the Lifter of my head…

The part that has invaded my soul is that God is my Shield, The Lifter of my head so that I will not be ashamed or pitied. He has taken my husband’s stead and has become my Protector.

Since the Soc Security money was taken from me, I fear the cost of everything….I don’t know how  all of these “troubles” with the mower, the car or with anything else that decides to become an unwanted surprise will resolve,  but, at this moment, I am realizing the protection that far outreaches that of any husband.

God knew He would be receiving my husband so He has made His Provision for me. My God has become my Protector/Shield. I must learn to relax a little and trust that My God will be there to provide what I need when I need it.

 To relinquish control to God is not an easy thing for someone like me. I truly like being the “Project Manager” and controlling production/time tables, but right now, I am totally out of my comfort zone which translates to being “out of control”.

I have a choice. I either trust in my faith and allow the same faith that got my husband from this world into the next to do what is best for me, or I can stress over everything and begin to unwind as a jeweler watches the spring unwind in an old pocket watch.

I choose the first option. I know the Hand of God when I see it and it has moved on my behalf in the past. I must remember the mighty things that He has already done and I must do all that I know to do. Bu,t when the troubles increase and they are more than I can manage, I must let my God be my Shield/Protector, my Glory and the Lifter of my head.

Cheating…

It is dawn (around 5 AM) and we are up…normally, I fail to see many sunrises. I am a sunset person as most of you know…but we are awake and it isn’t by choice.

I have just spent the last few hours trying to clear my husband’s PEG tube. It is the tube that was surgically placed in the stomach so that he would not have to have the NG tube down his nose all of the time. And, right now, I am scared and mad as hell.

It seems that my husband added dehydrated onions to his clear diet last evening. That means that these bits of onions swell up and return to a solid piece when they are in liquid….and at 4:30 AM, he woke me up to tell me that the PEG tube isn’t draining and he feels a lot of pressure.

I didn’t know that he “doctored” his soup. I think that he did it when he knew that I wasn’t around. I know that he wants food and he feels so deprived because he can’t eat anything solid. Clear liquids leave a lot to be desired if you have been someone who loved to eat. I can understand that in my head, but cheating like this can be disastrous and I am angry.

I irrigated the tubing and it was definitely plugged with something. When I saw the onion bits return through the tube, my husband confessed his crime. That only made me angrier. I told him that if this thing plugs, there will be a pain that makes all of the other pains look like a walk in the park. I know that frightened him, but I also know that what I said is true…and I know all that was done to get this tube in place and it is all undone over an ONION….

I feel so guilty when I get upset with him. I feel so bad because I know that he feels that this cancer is robbing him of everything that he loves. But, I am still his wife and his nurse and I am afraid for him and the pain that he has caused himself over the sake of “flavor”.

In some ways, ignorance is bliss, but this time, ignorance has the potential to harm him so. It isn’t because he didn’t know in his head that eating things would cause problems. He was instructed. I have instructed him and told him what would happen. It just isn’t real to him until now. Now, may be too late to save the PEG tube.

If this tube fails, he will have to have his NG tube down his nose and I don’t know if they can remove it again. The other risk is that the tumors have grown and closed off the way to the surface of the abdomen and in that case, there is no other options….but if it is an onion problem, then he will have to bear the guilt of hurting himself and me…

I can see him outside walking in the morning mist. I know that my words have hurt him and they also scare him…I know that he is praying and asking God’s forgiveness. I also know that he is trying to walk around to stimulate movement in the digestive track.

Cheating seems so minor at the time. It was too great of a temptation to pass up. But, as in all things, cheating costs a greater price than what is discerned at the time. Ask Eve.

I know that I am thinking of myself, too. I know that if this tube fails, that his care escalates to a higher level. It isn’t that I can’t care for him at that level, it is just more time and more work for me. It is a selfish point of view, but it goes to my desire to keep things at a minimum as along as possible.

We would be at this point at a later date. The tumors can grow and block the tube’s way to the surface of the abdomen and we would have to go to the NG tube to decompress the bowel, but we didn’t have to go there just yet. We could have more time that is unencumbered by all of the tubes and equipment. We could keep things as normal as possible for a little longer.

Now, his grandson, who is coming here for Father’s day will be afraid of him. That tears at his heart.

I don’t know what to do. I have done all that the hospice nurse would do for him…I irrigated the tube with Coke so that the carbonation and the acid would dissolve as much as possible. I hope that he doesn’t become nauseated. That is a sure sign that the PEG tube is closed and will not function….

Time will tell. I can’t go back to sleep now. I will have to keep watch and make sure that I can get to the doctor quickly. I am praying that he will not have to pay the price for cheating. I am praying that God will forgive my anger and my selfishness. But most of all, I am praying that the tube will become unplugged and this worry and frustration will lift off of me and my husband…

 

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….

 

What Next?

I find myself thinking about this a lot; what is next? I have an idea, but I still feel clueless.

The first question is, ” How much time is left?” It is the same question on his mind. Everyday, the day starts out by him telling me, ” If it were not for this big belly, I feel fine.” But, as the day goes on, the pressure of the girth and weight of the tumors begin to wear him down and it is clear that he feels sick.

Today, it was the same. The mornings are like a new beginning. He is refreshed and he has a list of things that he wants to get accomplished. A few hours later, the pain has increased and he is sitting in the recliner contemplating how much he failed to do. All too soon, he is out of energy and the list in his mind gets longer.

The second question is, “What is next?” Is it going to be another bowel blockage where there is nothing that works to decompress the bowel? Or is it going to be a blood clot that forms and doesn’t dissolve before it lodges in a vital organ? What is the next “shoe” to fall on us?

The third question is, “How bad is the pain going to get?”. Today, he was fine until he had a really bad stabbing pain that almost brought him to his knees. The fear on his face was clear. He was wondering if this was the kind of pain that was coming to him as he approaches his end of days. I understand his fear. It is the same as my own.

I can tolerate most everything that goes along with caring for him. The part that is the hardest is when the pain is unmanagable. The helplessness that I feel comes when I have given him everything plus all that will poteniate the effects of the pain medication and it is all for nothing…it demoralizes me and brings me to my knees.

Lately, I feel that I am living on my knees more than not. It is on my knees that I pray for guidance. It is on my knees that I pray for mercy on both of us and it is on my knees that I beg God to help relieve the pain and the stress of this way of  living.

There are times that I wish I knew what to expect, to know what is next, but then again, I don’t think it would help.

When I was younger, I always thought if I could see something coming or if I had a forewarning, I would be better prepared to deal with this incident or circumstance…In truth, nothing can prepare you for walking this path. Knowing exact details about what is directly ahead would do little to alievate the heartache that looms ahead. Maybe in knowing the immediate future,  it  would overwhelm us. There is mercy in being ignorant.

So, whatever is ahead, whatever is next, we are as prepared as we can be. In reality, we are as unprepared as anyone can be. It is a path that has egg shells everywhere and we tred so tentatively. Wondering if the next step will set all sorts of unseen circumstance in motion. Then, the thought is that I wonder if I am strong enough to handle them.

I know that I need to talk to the funeral director but I just can’t bring myself to do this. It isn’t that I am afraid. It is that I feel that, by doing so, I am giving up on his living…I can’t give up, not yet and most likely, never…It is foolishness to not do this. Foolishness or not, I am not ready for this next step….

I will just have to keep wondering; what is next?

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…

In The Shadow of Valentines….

The family doctor entered my husband’s hospital room. He wore a smile and when his gaze met mine, I knew that today was a day of small victories..He commented that we had to stop spending our holidays this way. He was referring to last Thanksgiving being spent in the hospital and now, Valentine’s Day.

Earlier, when I entered into his room, “Happy Valentine’s Day”, was the first words out my husband’s mouth. I fought back the tears as he apologized for not having anything for me. It was the first Valentine’s Day in 19 years that he hadn’t gotten me a card or gift.

Instead, I remembered the first Valentine’s Day present that he sent. He was the first man that ever sent me flowers. On a late Saturday morning I was busy doing my chores when my mother called me out of my bedroom. When I came into the kitchen, a bouquet of red carnations in a green vase was setting on the kitchen counter. My mom was smiling when I asked if they were for me. I ran to the front room window in time to see the florist’s van pulling out of the driveway. I ran back to the flowers and searched for the card. Deep in the bouquet, I found a it. I recognized the handwriting and I was enthralled because it was from him….

After lunch, the doorbell rang again. A different florist brought a couple more deliveries but I wasn’t very interested in those flowers even if one was from a  “secret admirer”. I only had eyes from those carnations. They were from “him“…

That what I was thinking when I gave my husband a big kiss and told him that I had all the Valentine’s Day gifts that I ever wanted. All I wanted and needed for Valentine’s Day was that he was feeling better…

I reminded him that we had a nice dinner at one of our favorite restaurants last week. I mentioned at that time that it was probably our Valentine’s Day dinner. I don’t know why I made that comment, but that is what I thought. Maybe I said that because it was such an enjoyable evening or maybe deep inside I knew that our likelihood of having a Valentine’s dinner was slim, I don’t know.

The rest of the afternoon I sat and read to him. Usually when I read to him he falls to sleep. I was pleased to see that he drifted off. While he was sleeping, I went over to see the Integrative doctor about my husband receiving his weekly IV of Vitamin C. He was coming out of the door and said that he was on his way to my husband’s room.

He visited with my husband and checked him over thoroughly. He agreed that Vitamin C IV would be benfitial and that he wanted to check out his Vitamin D level as well.

He reiterated the need for my husband to not become stressed or concerned over anything and as he was getting ready to leave, he called me over, held my hand and my husband’s. He closed his eyes and prayed. He thanked God for bringing my husband and I into his life. He gave thanks for my husband’s life and the good that has come into this world because he was in it.  He expressed his gratitude for being chosen to be my husband’s doctor and asked God to help my husband to not stress over any relationships, any finances, or any hurts or pains in his present or past. As he said, “Amen”, he gave us both a hug and told us to be well.  Tears were rolling down my face and my husband’s. It meant the world to us that this quiet man humbly thanked God for us….As he turned to leave, you could feel a sweet peace and a loving presence in the room. It was a wonderful Valentine’s Day present….

The shadows on the hospital wall said that sunset was approaching and I knew that I needed to get fuel before I went home tonight. I gave my husband a kiss and I told him what I needed to do and that I needed to go before it got really dark out.

He told me that it was alright and that he just wanted to go back to sleep. I sat on the bed and said that I wanted him to call me if he needed me to come back and spend the night with him. I told him that I wanted to be with him as long as he needed me…He reassured me that he was fine and all he needed was to go back to sleep…

As I was leaving, the lyrics of a song came to me. I had to think for minute exactly from where or which songs were these words. Then I remembered. It was a song that I sang for my audition for the IU School of Music summer camp. (It got me in the camp) It was the same year of high school when my husband sent me the Valentine’s flowers. The song is from the musical “Oliver”…I purposed to go home and find the song. It surprised me to find that Melinda Doolittle sang it on “Idol”. She made the song come alive. (Please, overlook all of the “Idol” blather.)

This song expresses my heart on this Valentine’s Day….