Seeing Beyond The Veil…Part I

four-generation1There are so many mysteries that we can never know while confined to this existence. I have always been fascinated by mysteries and now I have one that has had my attention for the past few days.

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

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

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

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

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

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

autumn-mystery1From that time to this, Mom has walked farther down the road of dementia and so has Dad. It is a surreal world that they live in. Many things are a sad comedic situation to watch. Yet, they seem to find contentment that is derived from each other’s presence.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Another Embarks On This Journey Called Cancer

Lately, it seems that the incidents of cancer are popping up all over. Our doctor made a comment not too long ago about the increase in new cancer as a diagnosis in his patient population.

Yesterday, when I went in to grab a few things at the closest convience store, the lady that works there has become a new aquaintence and she has voiced support for me and my husband over the past year. As I was paying for my milk and other things, she asked me if I could do her a favour. I responded that I would do whatever I could.

She asked if I would write down questions that she needed to ask her doctor. This coming Thursday she is going for her first visit with an OB/GYN oncologist and she wanted to make sure she asked the right questions that would produce the most information.

I was stunned. She was diagnosed sometime while my husband was in the hospital and I was unaware that she was told that she had cancer. Another one in our age group has cancer! Another one without insurance to cover this catastrophic illness. Earlier this month, my cousin buried her husband. He died of a rare form of cancer of the kidney…She is a widow at 48 and so it goes. It seems that my generation is being plagued by this terrible disease. The numbers keep growing.

So, this afternoon, I must sit down and try to figure out the best questions for her to ask her oncologists…Oh, Lord, God, I need Your help.

I know what I would be asking, but what if that isn’t what she wants to know? I think that I will write out a guideline that will help her form her own questions and that way, she will still be the one asking the questions. I also will tell her that I may be able to help in deciphering all of the medical jargon that goes along with doctors and cancer treatments.

 

It saddens me greatly that this wonderful lady must begin this frightening journey. It is long and arduous. It is full of ups and downs, twists and turn. That is just the emotional part of this journey. Then there is the physical… 

 It is like walking in a rocky place without the benefit of moonlight…                                                   

 

I really hate cancer, I truly do hate this thief that kills, steals and destroys!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Advocate

So much has happened. My husband’s hospital stay, holidays, loss of Internet service, catastrophic weather and just the everyday routine of things…all of these things seem to bear down on us and cancer marches on without taking note of anything else but its own agenda.

There have been some wonderful victories that are offset by set backs and the growing realization that his condition has stepped into a new level of deterioration. But, we will take the small victories that keep hope alive.

He is happy to be home and I am relieved to have the support of other nurses with the big relief of being able to reach a doctor on weekends. It has been a huge adjustment to hospice care but we are making the changes with more comfort now that we are in our second week.

The last hospital stay was more than enough to convince both of us that we didn’t want to have to continue going there for intervention for his bowel blockages…The ER visit was the clincher.

In the past, we have always followed the standard protocal which consists of letting him off at the Patient Entrance, I park the vehicle, I rush back to wheel him into the ER Registration area, give the clerk the information they need and then we wait.

It depends on how full the waiting area is, but we usually have to wait from 15 to 30 minutes before the triage nurse takes us back and they go through standard question regarding his history and we explain the complicated and difficult history.

Finally, after about 30 to 45 minutes, my husband goes back to a room and we wait a little longer for the nurse to come in and about another 30 minutes, the doctor comes into the room. An average, from the time we make it to the Patient Entrance to recieving medication for pain, can be 45 minutes to an hour.

All things are subject to what is happening in the ER. If there is a car accident or a small child that is very ill, it can be longer. We are at the mercy of circumstance and other’s illnesses. Cancer victims usually do not rate a high priority with triage. The assumption is that the patient is dying.

By the time my husband decides that he cannot take the pain any longer, he is well past waiting this kind of time to be seen in the ER. We have been through this so many times that we try to consider the waiting factor when we decide to go in to the ER. This last time, we didn’t have that kind of time.

This last obstruction seem to come on him quickly and the pain was at its highest level ever, so the thought of going through the ER protocal was weighing heavily on my mind as I drove into the hospital.

I decided that he couldn’t wait in line as usual. I decided to drive into the ambulance bay to get him into the ER area directly. In the past at this hospital ( I worked here in the past) , this was done especially for  more severely injured patients coming by private cars. The wheel chairs were staged between the outer doors and the double inner doors. I made up my mind that I would go in and get a wheel chair and wheel him directly into the ER. I would then go to the registration desk and get the paper work done.

Registration wasn’t going to be an ordeal because I was going to request that the clerk pull his records from his last hospitalization just 10 days ago. Nothing had changed and it was the same as before. That was the plan.

When I pulled our diesel pick up truck into the ambulance bay, I got out of the truck and went to the outside doors only to find that the doors didn’t open when I stood in front of them.

Thankfully, a maintanence man was standing outside the doors and offered to let me in. That was my first indication that a major change had taken place. I thanked the maintanence man and went into the area where the wheel chairs normally were staged…no wheel chairs.

I entered the inner double doors and walked toward the nurses station. A blond nurse met me and I said that I needed a wheel chair. She replied that they didn’t have any wheel chairs back here.

I must have given her a look that conveyed that she must be a few bricks short of a full load.  I repeated that I needed a wheel chair for my husband.

She said that I needed to follow protocal and go to the opposite side of the hospital. She continued on and said that I needed to go through Patient Entrance. Before she went through the whole speel, I said that I understood, but I needed a wheel chair for my husband now. Again, she reiterated that I needed to go throug protocal and she proceded to go through all the details.

I interrupted her and said that I understood the protocal, but my husband couldn’t walk,  he was in severe pain and I needed a wheel chair. She said that a bed may not be available right now and he would have to go through triage and be evaluated. By this time, I was thinking that if she said the word, ” Protocal ” one more time that I was going to tell her to put this protocal ” where the sun don’t shine”, but instead, I held my composure.

I happened to see the ER doctor that treated my husband the last 3 times he has been admitted through ER. I said to “Nurse Protocal” that this physician had treated my husband and he knew my husband’s condition. I totally ignored her and I began speaking to the doctor directly by telling him that my husband was completely blocked and in terrible pain.  A male nurse who attended my husband on his last visits recognized me and he immediately went to the front of the building and retrieved a wheel chair.

As the doctor and I were continuing our conversation, “Nurse Protocal” interjected a bed may not be available. I interrupted her and said that my husband needed his port accessed and this procedure could be done sitting in a wheel chair. I then began telling her what kind of Huber needle he needed and all of the other things that he received when he was in this situation. She turned on her heels and allowed the doctor and I to finish our conversation.

When the male nurse returned with a wheel chair, I followed him out to the truck to help my husband. As the male nurse and I assisted my husband out of the truck and into the wheel chair, I seemed to slip into my old patterns and told him my husband’s vital, his allergies and his last pain medication. I stated that I would move the vehicle so as to not block the ambulance bay and I would register my husband up front.

By the time that I registered my husband and got back to the ER area, my husband was in a room, his records from the early May visit were there and the orders were being used to get things going. my husband’s port had been accessed and he was receiving his pain medication.

Finally, the pressure was off and I was breathing again. My husband was out of his level 10 pain, he had stopped vomiting and was more comfortable…..

It was a long wait for a room on the usual hospital floor. We were in the ER from 9 PM to 4 AM. During this long wait, Nurse Protocal refused to look in my direction, she totally ignored my husband’s call light or sent someone else into his room when he needed assistance.  You could have frozen ice on her compassion. It was at that moment when I decided that my husband and I didn’t need this kind of hassle any longer. This episode was it….we could manage at home if I could get my hands on the things and medicines that he needed, we were never going through another night like this again.

Even though my husband’s emergency was not of the caliber of “life or death”, it was just as valid of an emergency due to the pain level. I know how triage works and because my husband is a terminal cancer victim, he would have been pushed to the back of the line had there been a more “immediate” emergency enter into the ER. This is not acceptible.

I am my husband’s advocate. I am his voice when he is racked with pain.  Many times, patients such as he can be overlooked because of the cancer.

No one admits to this kind of thing happening, but it does. After this incident, I decided that we would find a better way to deal with this kind of situation. If ER was our only option, I decided that I would make a formal complaint against the ” Protocol” and Nurse Protocal.

That incident was our jumping off point on this journey with home health care/hospice. It was time to avoid this kind of stress and the ends to the means would be a this new route. Not because my husband is in the final stages toward death, but because of this lack of understanding of cancer patients in an ER setting.

I sincerely hope that others in our situation never have to experience those few minutes where I was insisting, in plain English, that I needed a wheel chair. I fully realized that I am my husband’s advocate. I am his voice when others rely on “protocal” over care. When he is at the mercy of an insitution that abides by a chain of command, much like the military, I am the one who will have to “break ranks” and insist that he gets what he needs and not rely on the medical professionals (excluding Nurse Protocal, of course).

It is my voice that has to be heard above the routine hospital roar. Had my request for a wheel chair and immediate care not been heard, I was prepared to enact the scene out of the movie, Terms of Endearment, when Shirley McClaine circled the nurses station yelling at the top of her lungs for her daughter’s pain medication to be given ….it ismy job to get whatever attention my husband needs when he is in crippling pain.For me, in that scenario, there is no one else’s loved one, but mine in that hospital ER. At that moment in time, to me, he was the only patient in the ER.

That is not my usual perspective when we go into healthcare institutions, but it became my position once it was clear that he was going to be overlooked. I can not allow hospital protocal, processes or procedures to take precident over his pain. It becomes their working procedures vs my advocacy for my husband and I will not back down.

For those who are walking in my shoes on this journey of caring for a loved one with cancer, don’t be shy. Be as courteous as you can be (because they will call Security if you become too aggressive), but stand up, be counted for your love one and when all else fails, take your loved one out of that place, call 911 and get them into an ambulance just outside of the hospital ambulance bay if necessary, but by any means, get that cancer victim seen….and out of pain.

Well, that is enough of that adventure. There are others to follow…but this was the beginning of finding our way back home. And with home health and hospice we will never have to go through ER again….

I don’t regret anything I said or anything that I did that night. I will do it again and again and again if I have to….I am his Advocate….

A Painful Conversation Part 2

It is quiet here for the first time in 2 days. Everything seems like a blur since arriving home. We have had family, friends, nurses and, today, the hospice doctor in and out of the house from the moment of arriving home until a few hours ago. I feel fortunate to find these few quiet moments to sit here in front of the computer.

Yesterday, was tough because of my unfamiliarity with portable IV pumps, their connections, the connections to drain tubes and wrangling all of the lines that are feeding into his port. Whew…it seems that I have been walking and on my feet for 24 hours straight.

Yesterday, it seemed that if something could go wrong, it went wrong. At least 3 times, the connectors from the PEG tube to the drainage bag came apart allowing all of the contents to soak the recliner, the wool rug or the bed. It isn’t anyone’s fault but the designers of the equipment. The equipment must have tested well on everyone but us.

When this would happen, my husband would be embarrassed and become irritated with himself, with me, the equipment and anyone or anything of which he could think…I can’t blame him. It was frustrating, but there is no way for a softer plastic to stay attached to a connecting end that is made of smooth harder plastic.

Today, when it came undone again, I said that these episodes had to come to an end, so I got my trusty roll of silk tape and began securing the ends. I even placed a paper towel over the area so that we may have a little bit of warning. If we notice that the paper is getting moist, we have enough time to discover the failure and prevent another soaking…So far, so good.

The doctor visited today and asked what the purpose was for all of this “bandaging” of the tubing and I said that the tubing was staying together one way or another. He smiled. It is just another “fix” with tape. At least it isn’t duct tape. Not this time, at least.

It was a hard day, yesterday, from the leaking of the drainage tubes to the weird curve balls that the IVs would through us. Most of the difficulty was the fact that the IV connections that are used in home health care are different from those used in the hospital. After a few hurried phone calls and simple explainations, I was up to speed. Then there are the pumps…

I am so “old school”. My experience pertains to pre pump days. I know how to time an IV to run at the ordered rate with a watch. Of course, the problem with that is some people have positional placement of the needle in the vein and the fluids can run in faster than desired. “Threading” the line through a small pump with a computer chip that beeps at you for any little thing is “new” to me, but these pumps are old technology to those who are in this field, so I feel like a dinosaur. The only hope for me to show my accomplishment is for the power to fail; I don’t need to prove myself.

There was so much to absorb when we first came home that a lot of the instructions didn’t stick when it came to how to program the pumps, so I either called before I did anything or I waited until the nurse came later today….

Today was much better and both my husband and I felt more at ease especially after our painful conversation. In the early afternoon, my husband was fussing over the IV tubing, his drainage bag, the pumps and how I was mixing the medication for the next bag of fluids. There wasn’t anything wrong; he was being picky. His hypervigilence was getting on my last nerve. Our usual easy going way of relating was being strained to say the least until I finally asked him if all of these concerns about the medication were his job.

He answered no. I said for him to let me do what I need to do and leave all of the tubes alone. He apologized and I apologized to him. Then it struck me that he must be worrying about something in particular, but he doesn’t want to come out with it.

So, I asked him what was bothering him. He asked me if I remembered the night that my favorite aunt  died. We had spent some time with my aunt, uncle and cousins at the end of her battle with colon cancer and we were present the night that she passed away…

Of course, I answered that I did. He asked me if I realized that my aunt was “helped” to pass on. I know that I gave him one of my, “What are you talking about” looks. I asked specifically what he was referring to. He explained that he believed that someone may have given my aunt too much pain medication for the purpose of helping her pass on. He then asked, “You wouldn’t hurt me like that, would you?”

“Good God in Heaven, NO!!!…I would never do anything to hurt you, nor will I allow anyone else to hurt you.” My heart broke. I realized that what I mistook for hypervigilence and doubt in my ability to do the IV medication was really an unspoken and misconceived idea that my aunt died by someone intentionally overmedicating her.

I tried to explain that I didn’t know that anyone did anything to “help” my aunt pass on. I explained that I  cared for patients who passed on after receiving pain medication because the bodyfound relief and in that relief, they found release, but I couldn’t say that I knew anyone who was euthenized.

I asked him how long he has had this fear in the back of his mind and why did he not talk to me about this sooner. He said that this was on his mind since things changed from home health care to hospice. Secretly, he has feared that a form of gentle euthenasia was another name of hospice…

How my heart ached!!! This is a terrible fear to struggle with and it broke my heart that he didn’t feel comfortable enough to plainly speak of it, but now that he had, we could talk openly about this fear and the situation. I told him that I would never knowingly do anything that would harm him or cause him to leave this earth before God says it is time. I also told him that I would never allow anyone to do anything like that to him, either. I assured him that I was his advocate and it is my responsibility to do as he wanted. I reminded him that no one could get to him without coming through me first. No one will ever get passed me, not now, not ever.

As he relaxed in his recliner, he seemed as if a heavy load had been lifted. For the first time since coming home,  he was at peace. Now, it was my turn to feel tense. Ever since the conversation, I have been tormented by his fear and how much this has troubled him.

I knew that he had questions about hospice, but I truly thought that I answered them adequately. How did I fail to comfort him? Was it my own needs that I was thinking of? I know that hospice is the only way that I could get him home and out of those four walls of the hospital room. I know that it is the only way that he will not have to go back into the hospital and it is the only way to avoid another ER drama..(I will write about that drama tomorrow because this post is too long already)

I did not just say words to satisfy his fears. I meant every word that I said to him. I will not allow anyone in the health care profession or family to harm him. He is in charge of his life and God is in charge of his days. I want him to feel safe and secure here at home and with hospice.

Maybe tomorrow I will recover from the emotional stress that this conversation brought me, but as for as this night, I will have to find a way to calm myself down. I don’t want him to see me cry. He must not see me cry. Should he, he will ask why I am crying. How do I tell him that I am crying for his fear, for his vulnerability, for the hours he has agonized over someone hurting him….

I can’t seem to stop crying tonight. Maybe, I just need to cry over the painful conversation and everything else that seems to keep going wrong. No, I don’t need to cry now. Like my mom said, “Crying never changed anything, so why do it?”

You got to love that good ole stoic German stock, huh???

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….

 

The Fight Continues

Today is Day 4 and my husband is no closer to coming home. He has improved, but it is not to the point that would allow him to come home without all of the tubes and hydration equipment.

He is  so weary of being confined to bed. He has 5 lines into his portacath. Three for hydration, antibiotic and potassium and 2 more for nutrition. Then there is the NasoGastric Tube, and that makes 6. Taking a walk down the hall isn’t an option.

Yesterday, I sat in the hospital parking lot. I was returning from going for a meal. I sat there watching the holiday traffic. This hospital stay was one of many that found us in the hospital on some sort of holiday. It has become a running point of humor with our family doctor.

In 2005, we spent Christmas and New Years at IU Medical Center. In total, that stay was 30 days. We didn’t have to go into the hospital until Thanksgiving 2007. The next stay was over Valentine’s Day in February 2008 and, if you count Cinco De Mayo, we were in the hospital then. Now, we have covered Memorial Day…Let’s hope that we won’t have to spend July 4th in there….

It isn’t disappointing to be in the hospital on holidays. It is just being there at all that is bothersome. Having him in the local hospital is better than having him at IU Med. That was a hard stay for me. I would have to sleep in the recliners in the waiting room, at least that is what I remember about that Christmas Eve. Recliners are good for naps, but they suck at being a bed…trust me.

At least, I am just 5 miles away from the hospital and I can come home if I want to sleep in my own bed. I also can take care of things at the house.

On Monday, we reached a turning point.  For the first time, my husband told me that he is so very tired of fighting. He is so weary and he didn’t think that he could fight much longer. I told him how brave and strong he has been. He has survived this terrible disease longer than anyone would have guessed.

I told him that I didn’t want him to suffer like this. I told him how much I admired his courage and that it was OK to lay this burden down. It was alright if he didn’t want to fight anymore. And it is. I can take many things, but watching him suffer so much in pain and disappointment is more than I can bear…

In July, he will have reached surviving cancer for 3 years (In reality, he has had cancer for 11 years. It began in 1997 but it was diagnosed in 2005). We initially were told that he had 6 months to 2 years if the chemotherapy had an effect. He didn’t take all of the chemotherapy and has followed an alternative program. He has lived longer on that particular therapy than anything that the medical community could perscribe.

It is amazing that in clinical trials, a drug company only has to show the FDA that their chemotherapy drug can cause an extention of life by 4 1/2 months to win approval. Survival is all that is necessary. They do not factor in anything for quality of life. They presume that you are dying and your quality of life isn’t the objective. They are so wrong…Quality of Life is the objective to living.

On my husband’s high dose Vitamin C IV and oral therapy, he has surpassed the findings on the clinical trials for Oxcaliplatinand the other drugs. He not only survived longer than 4 months, he was active and living with a wonderful quality of life, but no one makes money, or I should say, the amount of money on a simple vitamin…so, insurances are not a forthcoming in payment and oncologist fail to take this therapy seriously.

Even now, the effects my husband receives from this therapy will help keep his skin from breaking down and there are so many other things that he receives from this kind of regime.

Please pardon my “soap box” moment. I am passionate about alternative care and having the medical community to look at the whole person instead of the pathology, and then the person. It is my personal crusade.

Our family doctor is going to be contacting hospice today. We will have to go through the consulting process. I have no clue as to what to expect.  I am sure to be better informed after the Hospice Doctor comes into the picture.

Hospice is the only way for him to be able to come home with the tubes and all the other equipment. It is the only way that he will not have to go back into the hospital again.  That is the movtivation behind going on hospice. He wants to be home.

I told my husband that we will find a way for him to go outside. I reminded him that we have a 100 foot electric extension cord that can reach around the house if necessary. He will not be in as much confinement and we will find a way to accomadate whatever we have to.

I am hoping that he will be home with or without the equipment by the end of this week.

Thank all of you for your kind words of encouragement and your prayers…

We may have accepted that my husband is loosing his battle, but we continue on. We have hope in a kind and loving God who hears our prayers for mercy at this time. We believe that there is always a purpose in everything, even in suffering. We also know, that much can be learned in these dark shadows and there is an ending to the Valley in which the shadows live.

This is the Final Walk. These are the days where my husband will find his release from pain and suffering. I am resolved to walk with him as far and as deep into these shadows as I am allowed. When he finally walks into the Sunset of Life, I will live on for both of us.

To what end, I haven’t a clue, but I am purposed that his life will not be in vain. He will live on in me…so the fight continues.

 

Days Run Into Nights etc….

There are moments when it is difficult to know when one day ends and another begins. That is how it feels regarding this last week.

Last Thursday, we were in the ENT Specialist office. He took CT Scans of my husband’s head and sinuses. He examined the mouth and he concluded that the origin of this massive infection was in the teeth rather than in the sinus. That is not to imply that the sinuses are not troublesome, they are. It appears that the teeth may have been the original problem….or conversely, the sinus, may have caused the dental decay.

It is the old question, “Which came first, the chicken or the egg?”. Things are so murky that we don’t know which came first, the infection of the teeth or the sinus infection that has infected and affected the teeth. The debate could be the basis for MRI’s, CT scans, ultrasound, on and on it goes….Regardless, he has a massive infection that has overpowered his immune system.To completely irradiate the infection, the teeth must be extracted and that is not a simple procedure.

Because of my husband’s history with pulmonary embolisms (blood clots in the lungs), he is on a blood thinner as a precautionary measure. Surgery on someone who has treatment to thin the blood makes any kind of surgery “tricky”. So, our family doctor must coordinate and manage the dosage until the PT/INR is at a “safe” level for surgery. At the same time, things must be managed to continue to prevent his body forming any clots…. This is a difficult situation. Bleeding or blood clots can present a life threatening scenario.

After seeing the oral surgeon, I withheld his Coumadin and a blood test was taken on Friday afternoon with a repeat blood drawal on Monday. Friday’s results showed that my husband above therapeutic level (exactly where he needs to be to prevent clots), but too high for surgery…

Today, as my husband got ready to go into the doctor’s office for the re check, he had a terrible incident of pain. In the past few days, the tumors seem to go into a massive spasm which causes him to double over with pain. He is horrific abdominal pain for a few minute. These minutes seem like eternity.

I immediately go into “nurse” mode and start pulling all the pain medication that I have for his pain and I potentate it as best I can. The bowel seems to “cramp” and the next few minutes do little to relieve the pain or the cramp. It takes 15 minutes at a minimum for him to begin to feel some sort of relief.

As he holds his stomach and cries out for Jesus to help him, my mind is working double time to make sure that I haven’t overlooked anything that may help him get through this situation. It is in these moments that I sense his fear. I know he fears that this can develop from an infrequent situation to a continuous.

My fear is that I cannot get the pain reduced and I will have to “fuss” with him to get him into the car and on into the hospital. He is so adamant that he does not want to go into the hospital, now. It seems that I have to wait until the pain gets severe enough to overcome his resistance. Those few minutes seem to stretch on forever and I am without recourse until the pain wins.

It was clear that he wasn’t going to be able to go into the doctor’s office to get his blood draw, so I called the family doctor and explained what was happening and that we would be in there for the blood draw. It is very important to get a PT/INR because my husband is tenatively scheduled for extraction of all of his upper teeth.

Before you think that it is too many teeth to take out at one time, I should explain that my husband only has 8 teeth on the top and 14 teeth on the bottom. He has inhereted his mother’s propensity toward lousy teeth. His mother lost all of her teeth in her twenties. My husband lost the majority of his teeth in his early 30’s. I suspose he is fortunate to have this many teeth left.

Now, the next question will be how to pay for an upper plate. Teeth and dentures are not covered under Medicare. The majority of this episode is directly out of pocket. The problem is that there is a hole the size of the Grand Canyon in both pockets…we have no money for this expense.

This situation reminds me of my mother and her final days of cancer. My mother had multiple melonma. (I doubt that I spelled this correctly). Her kind of cancer was of the platlet cell and she was in the terminal stage when she was diagnosed. A month before she passed away, her forearm broke and the doctors and my father were debating as to whether her arm should be set and placed in a cast. At that time, the major consenses was to do nothing because she was failing fast and it was doubtful that it would “knit” back to gether.

Needless to say, I wasn’t happy with my dad for allowing the doctors to talk him into not setting this broken arm. I explained to my father that ends of broken bones will touch each other which set up terrible bone pain. I was very upset that the attitude was to leave her in pain because it would be a waste of time and material because of the cancer.

This attitude was prevelant at the time with cancer patients. If they were not going to live past a few months, save the money and let things ride. I told my dad to put himself in Mom’s shoes and see how he would like this kind of neglect and state of pain. I asked him how he would like being discriminated and treatment withheld because he was a cancer patient….My mother’s arm was set with in the next 24 hours.

In my husband’s case, no one said anything about not working on his teeth and not buying dentures because he has terminal cancer, but I know that it crossed their minds because it crossed my mind. I was prepared to fight all of them if anyone hinted that this was a lost cause and he didn’t need dental care…

Besides, this situation maybe indirectly tied to the cancer metastaticly. It doesn’t matter to me if he has a week to live or a month or another year. No one needs to suffer with infected and abcessed teeth that causes pain.

On Friday, the oral surgeon called to find out the results of the PT/INR. I suggested that we tentatively set the oral surgery for Tuesday. That way, we will not have to do and “on call” situation where the surgeon’s office calls and we have a few hours to get up there. That is just too hard on anyone, not to mention someone who never knows what the morning or evening will bring…

So, he is set for oral surgery tomorrow afternoon. He was unable to go in for the PT/INR today because of the pain situation, however, we have over 8 hours before surgery that can accomidate obtaining this blood work….then we had another complication today (Monday afternoon).

As I was hanging up the phone from leaving the message that we would be in Tuesday morning for the PT/INR, my husband was holding his chest. He looked pale and  his respirations were not right. He told me that he was experiencing all of the symptoms of having a blood clot in his chest. He had pain, breathing changes, he was eating “Tums” like they were candy.

Of course, I said that we had to go to the hospital now if he believed that he was having a PE (pulmonary embolis). Much to my frustration, he refused to go. He said that he only told me because he knew that I would be upset if he didn’t tell me about it.

Absolutely, I would be upset, but how much more frustration can I endure if he refuses to go to the hospital…..He told me that he needed something to calm him down and he wanted his anti-anxiety medication.

At this time, I thought that I was the one who needed that medication more than he did, but I did as he asked. He is so determind to not go to the hospital. I had visions of him standing in the doorway one minute and the next minute, he is hitting the floor with a sickening thud. He can be such a mule.

Then, I rethought this situation. Would I rather die quickly from a pulmonary embolisim or from the cancer that is causing me this kind of pain in the “gut”. What would I want?

I made an “executive decision”. (That is a left over term from when I was president of the family’s small company). I gave him his anti anxiety medication and double the dosage of the blood thinner. If he can’t get his teeth pulled because of this PT/INR, we just wait a few more days while he is on his high powered antibiotic, regroup our thinking about this turn of events and procede as the doctor’s advises.

That is a “rouge” decision, but it is the only option that I could think of should he be throwing a clot.There is little that I can do if he is refusing to go to the doctor’s office or the hospital. I also gave him pain medication for his “break through” pain. I knew that he was heading to sleep from all of the medication that I administered. I would re evaluate the situation when he woke up….

I asked him if he was alright with me going out to mow the grass. It was clear that he didn’t want me to hover over him like a hawk. I knew that I would come in and check on him frequently and I would take this situation from that point, but I was not about to argue with him and cause a high blood pressure situation that could aggrevate the possible blood clot in the lung.

So, that is what I did. I mowed grass with a push mower. I reasoned that physical activity would work off my anxiety and I would not have to sit on pins and needles as I watched his breathing or waiting for him to get over his stuborn spell.

I trimmed around all of the obsticles that the yard offers and then some. I needed to work to get my mind off of his potential death from his refusal of medical care.  An hour later, he had no further complaint about chest pain or abdominal pain. He was sleepy.

After pushing that mower, I cam in the house. I noticed that I could hear my heart beat in my ears and I decided that my blood pressure, in all probability, was elevated. I remembered my B/P medication so I took my meds and I laid down on the couch in  hopes that my B/P would decline. In the next few minutes, he was asleep and before I knew it, so was I.

We slept from 3 PM to around 7 PM. When I got up, I noticed that my husband was making coffee. I didn’t think that it was unusual. I thought that I could use some coffee. There are times where I make coffee in the late afternoon or early evening. I didn’t think anything was wrong until my husband asked me about the time we would need to leave to get to the family doctor’s office for the PT/INR. I answered that we would need to leave about 8 AM tomorrow morning.

My husband got a paniced look on his face and he said that we were already late and I needed to call the oral surgeon that we would not be able to get to his office on time. After a few seconds, I realized that he was confused.

He thought that it was 8 AM, day of surgery. He believed that we had slept all night and it was the morning of the surgery…I looked at him to try an evaluate as to whether he had a slight stroke.  I didn’t see any drawing of his mouth. His speech was slow, but I attributed that just waking up after taking the pain medication. I asked him to squeeze my hands so as to evaluate any neurological weaknesses. I began asking him things that required short term and long term memory…

Everything was alright except for the loss of time and his believing that we were late for the oral surgeons.Then he spoke out what I was thinking…”it is the medicine, isn’t it? It is the pain medication. It does this…doesn’t it?

I suspect that it is, but I also know that he has done this long before he had cancer. I reassured him that he was resting very deeply and things like this can happen outside of medication. That is a true statement, but I also know that, in his situation, it is more likely to be the medication.

He finally settled down. I asked about the pain in his abdomin and in his chest. He stated that both pain areas were below a 5 on a pain scale. I couldn’t help but think, “Mission accomplished. Out of pain and no trouble in the respitory department. Color is better, skin is not as cold and clammy. He is appearing improved. I was both relieved and frustrated. Now, he will never consent to go into the hospital tonight or any night when he is able to “beat” this kind of situation….

We were lucky, this time. But, for now, and for the expanse of time that he is on this powerful pain medication, days will run into night and night into day…he will continue to have to be oriented to day and time and possibly place.

I don’t mind orienting him to place and time when I know that he can grasp the correction. I am not looking forward to the day when I tell him the time and place and he argues with me…I suppose, I need to begin taking the local newspaper. That is the only thing that will give the correct date…

He will have to  figure out that the night ran into day or the day ran into night. Either way, we didn’t oversleep and miss our appointments…it is at the oddest times that scripture comes to me. “As long as it is called ‘Today’….” it is the day of salvation…

As long as it is called today, the pain medication failed to steal a day from him or from me. We are greatful for the small things. We are greatful for even the smallest things, like knowing the actual date and time. As long as it is called “Today”. We will not worry that we missed anything important.

 

 

 

The Other Shoe…

In my last post, I asked the question, “What’s Next?”. This morning, it became obvious that the other shoe was about to drop on us…My husband’s face was swollen on the right side all the way up to his eye.

As he has aged, he has inherited his mother’s “bags” under his eyes. This morning, these loose folds of skin were full of edema. Around his nose, the swelling was the worst. It was such a shock because, last night before I went to sleep, his face was normal. I didn’t see this coming.

The week prior to his last hospitalization, he complained about three of his front teeth. He said that he thought that they were loose; he could move them without effort. Because we do not have a dentist in town, presently, I didn’t try to find our old dentist who is in the National Guard. He is the last person to look at my husband’s teeth and that has been several years ago. I thought that when the old dentist returned from duty, I would make an appointment. And last week, my husband went into the hospital. Because he was on antibiotics while in the hospital, I did nothing more regarding this complaint. I dropped the ball.

This morning, after seeing his face, I immediately called our family doctor. We do not have dental insurance, however, if this is related to an infection, Medicare may possibly stand for the billing. If not, this kind of problem can totally drain every penny that we have left for this month and we need groceries.

When I called our family doctor, the receptionist said that there wasn’t any openings. I explained that this couldn’t wait and we had to see the doctor today. On Wednesdays, after our doctor finishes with his patients for the day, we usually go for my husband’s relaxation session, so I knew that we would see him.  I didn’t want to wait until then and take the risk that all of the office help would be gone. By all rights, this needed to be an billed office visit.

The receptionist came back on the phone and said that we could come in at 3:30 PM. I agreed with a feeling of relief, but I wondered if we didn’t need to be seen even sooner. This infection and swelling appeared in spite of my husband taking a high powered antibiotic. It was clear to me that this infection is not a “run of the mill” kind of “bug”.

It is either a very virulent strain, or it is a “super bug” that has developed from all of the antibiotic use over that past few months. Either way, cancer patients succumb to infections much sooner than complications related to the cancer. This is a life threatening situation.

When our family doctor got a glimpse of my husband’s face, the expression on his became very grave. He immediately called a dentist friend of his and an Ears, Nose and Throat Specialist. We anxiously waited for these doctors to return his calls.

The doctor asked my impression and I told him that for the past 6 months, my husband has had to take an antibiotic for a chronic chest congestion condition. I told him that I thought that this may have been a sinus problem and the drainage from the sinus may have caused the problem in his chest. I suggested that over time, the chronic “bug” and my husband’s body, may have become resistant and now we are looking at an all out sinus infection with a “super bug”…The doctor thought a minute and said that my scenario was very plausible, but we could not rule out the possibility of an abscess setting up in one or all of the three teeth.

After the doctor and I discussed things a little further, he ordered the nurse to give my husband a Gram of Rocephin ( a very powerful antibiotic used for cellulitis and soft tissue infections) and he wrote a prescription for a different antibiotic to be taken orally.

Finally, the specialist called back and our doctor was able to get my husband an appointment for tomorrow around noon. Our doctor stated that he asked for a morning appointment, but noon was the earliest opening. The specialist will determine whether my husband will be admitted into the hospital. This hospital is located in a town that is 20 miles away. It is all depending on whether the specialist has to drain an abscess in my husband’s sinuses or not.

For anyone with a normal immune system, this would be a big “bother”, but there would be no fear or question as to a recovery. For my husband, there is no such assurance and this infection is very serious as to his survival…

At least, tonight, we are at home. My husband is sitting on a hot water bottle to help with the pain at the sites of the massive injection. (Both buttocks were targeted and my husband has complained about the pain ever since). I am writing this to help relieve some of my anxiety. Please forgive me for giving a detailed account.

I will pack a bag to bring along to the appointment just in case my husband is admitted.  Gas prices are too high to drive the 40 mile round trip every day. I don’t know what I will do about our little dog. I suppose I will  ask my cousin who lives down the road to look in and feed him…

I am so weary right now. I am scared, tired, and totally pissed off. I am not angry at my husband. I am angry at this cancer and its way of being in control. I am upset that my husband has to endure another area of pain. No matter what I am angry over, it doesn’t change anything. This is the other shoe…I suppose I was expecting it. I just didn’t see it coming in this form….

God, help me, I am so over all of this!!!! This is the first time that I have felt this level of frustration. When I get a little perspective, I remind myself that this is nothing compared what it can become “…so stop feeling sorry for myself and Buck up!!!”.

I suppose, I just need to take a minute and then I will “Buck up”. After all, I am an US Marine Mom. I am made out of tougher stuff than this..At least, that is my self-talk, talking…

This is just the other shoe. With God’s help, my husband will recover and I am determind to plant my flowers sometime next week, even if I have to do it the dark….

After my self pity party, I remind myself, there are more shoes to come and more that can drop…

Shades of Frustration …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

….ah….relief

 *smile*