Shadows of Change

It was late yesterday afternoon before the surgeon came in to release us to go home. There was a flurry of planning and obtaining final orders for the hospice/home health care. Everything had to coordinate around 3 doctors and the agency.

If my husband signed one paper, he signed 20. On and on the organizing went and just when we thought that he would be free of the IV lines, the home health nurse called to say that the medical supply company would be delivering the supplies to our house at 3:30 PM. There was no way for us to get there before this delivery…

This was the goal, but the enormity of it all was finally hitting me. Skilled nursing care 24/7 and I was primary caregiver. I knew that my skills were intact, but I was in the business world for as many years as I was a practicing nurse and the nursing field had changed so much since I last was responsible for so much care.

There is no regret. My husband is home. He will not have to go back to the hospital for the emergency interventions in regards to the partial or total bowel obstructions, but all of these changes will produce adjustments. There will be many people in and out of our home. I wonder if it will ever feel like it is just the two of us ever again.

I know that, in time, we will adjust to this new state of normal. It is always more difficult when it is the beginning. It is the beginning for schedules of medication, for tracking fluids, for dressing changes.

When he came home for the hospital in 2005, I had wound care, (his incision had opened and I had to pack it while the gauze was wet and then remove it when it dried. That treatment is to promote a healing process called granulation or filling in a space.), I had to INR drains to irrigate and record the amount of drainage, I had dressing changes of the incision and this went on for a month.

All of this was with the understanding that he would heal and resume his activity totally. This time, it is different.

He will resume some of the activities, but there is a major one that will not ever resume and that is his ability to consume remotely solid food. Of all of the daily requirements that my husband enjoys, it is eating.He relishes food and he enjoys the process of preparing a meal, the presentation of the food and the act of community that dining gives. But all of these, he loves the taste of food.

This is going to be a real trial and I don’t know if he is going to pass this test. He complained bitterly about the fact that watching TV was nothing more than a parade of commercials pandering the latest special at Captain D’s, Pizza Hut and their pasta offerings and even McDonald’s looked good. (He isn’t a fan of fast food) So, he just refused to watch TV after the second day.At home, he watches the movie channels that are without commercials. At least, he has a break in all of the temptation.  

Frankly, I don’t know how we are going to keep him from trying to eat something. I can’t sleep at night wondering if he is sneaking off into the kitchen…

Should he eat something solid, we have a high probability of loosing the benefit of the PEG tube and that will be so discouraging. Yet, who can blame him? I can’t, but I must do all I can to prevent this from happening.

I am hoping after the next few days, all of the flurry of activity will decrease and we can settle into our routine. I know that he will be in a better state of mind and I will be more relaxed, especially after having a few nursing skills reviewed with the visiting nurses…

These changes feels so shaky right now. I know that we will be alright, but with these changes come new challenges and I hope that we are up for them.

Right now, I am thrilled that he is home. Our goal is to advance back to where we were before last week, or at least get as close as we can to that. I want him to be free to walk around the farm and to enjoy the fresh air…

I also know that we will find new things that will be restricted from him, but until then, getting back to “normal” is enough of a task in and of itself…

Changes are upon us. With help, we will find a new way of living and not just surviving. That was the goal and that has never altered, even in the shadows of this leg of the journey.

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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.

 

Brief Update

My husband had to go into the ER at around 10 PM on Friday evening.

Things are progressing very quickly, it seems. The scan shows that he is totally obstructed in the area of the small bowel. This is not good. This is not good at all…

We have some very important decisions to make. I think that the only way to get my husband back home is for him to go onto hospice care.

He had tears rolling down his face. I asked him what was causing these tears beside the obvious pain and nausea. He said that he really hates it in the hospital.

I promised him again that I would bring him home. We will see what the doctor has to say this morning, but at the first possible opportunity, I will bring him home. I am afraid that it will be the last time…

It is time for a miracle. If one isn’t coming, it is the kind of times that try men’s souls…at least, this woman’s soul…I pray that I don’t fail this test….of faith or of faithfulness…Your prayers are greatly appreciated…

I must go for now…

 

My Apologies…

Sorry that I was unable to write the follow up to my last posting.

Today has been very busy. My husband’s son is flying in from Washington State this evening and we are thrilled, but my ability to manage my time is not as good as it used to be.

A quick thank you to all of you who commented on these last few posts…you comments do afford me comfort and I am very appreciative of you kind words…….

I will try to find a way to finish up the post on hospice care in the next few days…

Bye for now

A Painful Conversation….Part I

Because of the lack of sleep, I cancelled the oral surgery for yesterday. The night was long, but when the light of dawn approached, my husband was better.

At the height of my husband’s pain, he called my cousin who lives down the road. He asked him to pray  for the pain to be relieved. At that particular time, the pain was becoming unbearable. All the treatments that I administered failed to produce any relief and it looked like we were heading for the hospital.

After my cousin prayed with my husband on the phone, and we settled into the night to see where it would take us. Around midnight, there came a a knock on the door. It was my cousin. He had come to do as he did before when my husband was hospitalized. He was going to sit by my husband’s bed and pray…pray until there was either a release in his spirit or there was relief of the pain. It didn’t matter to my cousin if it took all night.

Since moving back to my here, my cousin and my husband have become very close friends. Their friendship is a two way street and it is an answer to one of my husband’s oldest prayers. He has prayed for a “true” friend for years. In these past months, God has provided a renewal of this friendship as well as renewed others with whom my husband had a friendship 30 years ago. It is “funny” that most of these renewed friendships are with my cousins. And, God has met this need when it counts the most.

As my husband, my cousin and I discussed the inevitable partial bowel blockage that was beginning , my cousin made mention of a procedure that he and his wife had used in the past and he suggested that we try it.

At first, my husband was reluctant, but what did we have to loose but a 5 day and night stay at the hospital. When I said that we didn’t have the equipment necessary for this kind of treatment, my cousin left. He went into the local WalMart and returned with everything necessary for this procedure.

On my cousin’s return, I administered the treatment, and witih in 40 minutes, the pain began to subside.  Around 5 AM, we were able to sleep.

In the morning, when I called the Oral Surgeon and explained what was taking place, suggested that we tentatively set a date for a Friday afternoon appointment; the doctor’s nurse agreed. So, tomorrow, my husband will have his port accessed in the morning to receive his weekly IV of Vitamin C, leaving the port accessed, drive 20 miles for the extraction, drive back to the cancer center so as to have the port unaccessed and then return home. The traveling will wear my husband’s strength down to a frazzle, but then to endure the additional pain and the checking for excessive bleeding (he is still taking a low dosage of blood thiner) will add our fatigue. It makes me tired just to think about it.

Later in the day, we went to our family doctor’s office for my husband’s routine time of relaxation. My husband always look forward to this time and it is a great way for our family doctor to keep up with the pace of my husband’s condition.

Of course, our doctor was expecting the teeth to be gone and was surprised to hear that we were battling another round of partial bowel blockage. To my surprise, he said that he needed to know how we were holding up under all of this.

The first words out of my mouth were that I am weary. I told him that I am weary in body, weary in soul and becoming so very weary in spirit. He looked at my husband as he nodded in agreement. Our doctor asked what we needed and I rattled off of quit a list. After hearing it, the doctor said my list sounded like what is provided through Hospice Care.

One of the guidelines to qualify for hospice care is that the patient has 6 months or less to live. It also stipulates that the patient is not taking any prescribed therapy for the purpose of fighting the disease. Hospice is totally palative care. It is designed to provide treatment and procedures that bring only comfort for the patient.

Our doctor said that he didn’t know if we would qualify for hospice because of the IV Vitamin C therapy. Because the oncology community doesn’t recognize high dose Vit C IV treatments as cancer fighting treatment, we may not be restricted from hospice. It is a “gray” area.

My husband asked if hospice required him to be confined to the home and the doctor said that it didn’t. My husband asked what would happen if he lived past the 6 months time limit and the doctor replied that hospice could be renewed or, if my husband chose to take a new chemotherapy, then he would be from hospice care.

I asked if he would be the primary doctor for my husband’s care and he replied that he would see us as we do now, but he would not be the doctor in charge of his hospice care. My husband’s hospice care plan would be directed by a different doctor… I asked who was the doctor in charge of hospice and he said Dr. So and So headed up the local program.

My husband got up and walked to the table. It was clear that he was over this discussion and he said he wanted to get on with the relaxation treatment. The next 40 minutes seemed to fly by and I didn’t do much relaxing. My mind was stuck on the conversation about hospice and I had some concerns.

When we were discussing hospice care, it was clear that I had mixed feelings. At the time of our discussion, I told the doctor that hospice care seems to be an admission and an acceptance that there is no hope for survival. I said that I know that my husband has not given up hope. It is the same situation with the prevailing attitude in the cancer center.

We struggle with the concept that, if you arefourth stage of cancer, you are dying and there is no hope. Mentally, the effect is a feeling of defeat and being defeated is something that we never embrassed. Even when I know from a medical point of view that my husband is 4thstage/terminal, his daily living does not reflect his resignation to death. 

My husband may conscienciouslyunderstand that he is loosing ground withhis fight with cancer, but he has never resigned himself to loosing thisbattle. The only time that this kind of thinking comes to the surface and out of the dark recesses of his mind is when he is in great pain or when he knows that he is being admitted into the hospital. All of this may be a mind game of sorts, or some would say that it is denial. Regardless the label, we know that a swift road to death’s door is to give up on hope. My husband has not given up his hope even when mine falters. I do not want anything to rob my husband of his hope and hospice seems to imply that. 

For clarification, I am not denying his medical condition to “play” along with him. I tell him the hard cold truth regarding his condition, however I never tell him that it is hopeless. Nor will I!

When my husband got up off of the table, he looked refreshed and he felt better than before coming into the doctor’s office. He was ready to go. I asked to speak to the doctor alone for a few minutes.

I know that my husband was surprised by my request, but, what I wanted to discuss was something that was not for his hearing. It was regarding the doctor in charge of hospice…

I am getting too tired to finish this post right now, so I am stopping until the morning…

Days Run into Night…Part 3

We were to go to the Oral Surgeon’s to have the teeth extracted. As usual, there was no vein to be accessed. The Oral Surgeon tried to access his port with a “butterfly” needle. That was disasterous. I hope the Oral Surgeon hasn’t done anything to hurt the portacath. Without the portacath, there is no way for my husband to take IV fluids; it is a lifesaver, literally. So, we are to go tomorrow and have his port accessed at the Cancer Center then drive 20 miles to get the teeth extracted and drive 20 miles home and hope that his Prothrombin Time is still at an acceptable level.

But, that may not happen. Tonight, we are dealing with all of the symptoms of a partial bowel blockage again. He is having no results from the procedures and the pressure is building in his abdomin. That means that the pain is building….I don’t know if we can take this kind of pain and wait until morning….we may have to go to ER.

It is another day that will run into night and when day returns, we will either be dealing with bleeding gums or we will be in a hospital room with the nasogastric tube decompressing the bowel again…

I will sleep with my clothes on so that no time will be wasted should we need to go in a hurry….I will keep vigil to make sure that he is able to tolerate the pain. I will watch his resperations so that they are even and he will continue to suffer until there is some sort of relief…

I think that it has been 10 days since leaving the hospital. Maybe it has been 2 weeks already. I don’t know for sure…

Again, I pray without ceasing and most of the time without knowing that is what I am doing. Again, the color of his skin has a palor on it. Again, I feel so helpless because I am not able to help him find relief.

Wasn’t it just yesterday when he said that he didn’t have much pain, or was that last week? I don’t know anymore what day it was. Was it last week when his face was so swollen? Yes, it was last Wednesday when we had to get into the doctor’s office because he woke up with the swelling.

I don’t know much right now…other than it is night and it will be a sleepless one. I don’t know if the dawn will be met here at home or in the hospital…I don’t know how much longer he can go on like this. He is weary and he is in pain. I am helpless and I don’t know what more to do…

Days Run into Nights etc…Part 2

In the first, “Days Run into Night etc” I touched on the subject of loosing track of time. There have been several incidents where my husband has lost count of days or he woke up from a nap and believed it to be morning when it is evening. This is happening more often.

He accused the pain medication as the culprit for this memory lapse and in all likelihood, it is the medicine.

The mind and body seem to disassociate when the pain becomes unbearable. His mind is effected by the pain and by the pain medication. His personality is changing as well. I see glimpses of this and wonder or ponder if this will be more of the man. Will I even recognize this man when he is racked with unbearable, uncontrollable pain?

Will my heart split as I must care for someone that becomes a person that I don’t know? These are just a few of the questions that I ask in the silence of midnight. 

He does his best to keep from lashing out at me. He will go to the bedroom for a while. I think that he is trying his best to not hurt my feelings. I know that irritability is part of pain. It is also an effect of some of the pain medication. I understand, but he is trying to protect me.

I want to tell him that I can take his unpleasantness, but then I question if I can. I ponder all of these things and I try to not think too much on them, but they are still there.

I know that his mind is being muddled by this disease. I know that he confuses facts and dates. Time and again, Imust double check his  accuracy and that makes him upset. There are too many times that he has not understood something. With medication and with test results, error is not something that can be tolerated…I do all that I can do to not intensify this feeling of hopelessness, but it happens all the same.

As one day flows like an endless river into tomorrow, a despondency creeps into our lives, my husband asks why God has not answered his prayers for healing. Why has God turned a deaf ear to our petitions? What purpose is there in having this disease? Why is he dying?

These kinds of questions make me feel that I have to defend God, then I stop. I do not have to defend a God who created all things. My words are powerless. Besides, I have no answers. I do not know why God seems to have forsaken us in our most dier time of need.

As he continues to ask, I have my own list of questions that have no answers…Nothing makes me feel more helpless than this very moment…I feel more helpless than when the pain medication fails to bring relief.

This kind of pain is of the soul. There is nothing that can anethesizes the soul when this pain is falling from his lips. My heart is breaking and my faith is also cracking under this strain.

I have no words of comfort. I am not about to tell him what some would say. There are some who would tell him that he and I do not have enough faith and that is why there is no manifestation of healing. I hope no one is so foolish to voice this thought. I don’t know if I can be civil in the presence of this kind of stupidity.

As his tears of disappointment and brokenness fall, I open my mouth and nothing comes out. I hold him as he sobs with the realization that a last minute miracle is not going to take place and deliver him from the jaws of death.

I tell him that I have a long list of unanswered prayers and I don’t understand the purpose of his leaving and my remaining.  I have no clue as to how to live past his life. I have no reassurances or scripture that comforts me.

I know when David wrote the 23rd Psalm, he was praising God. When he penned this passage, ” Even though I walk through the Valley of Death, I will fear no evil. Thy rod and thy staff they comfort me…”David wrote those words after the threat of death passed over him. David was praising His God for deliverance out of certain death. David praised God’s kindnessses and His power.

So many people site the 23rd Psalm when Death is approaching. They are making the Psalm fit the circumstance of Death, but it is not death that David is talking about. He is talking about his relationship with God. We make these verses a comfort, but they do not comfort. The part of the Psalm that addresses Death’s journey is the part that says, “Even when walking through the dark Valley of Death, I will never be afraid for He (my God) is close beside me….Loving, guiding all the way, He spreads a feast before me. In the presence of my enemies, He welcomes me, as a special guest. With blessings overflowing, His Goodness and Unfailing Kindness shall be with me all of my life. And afterwards, (After death) I shall live with Him forever, and ever, in His Home.” (my paraphrase).

David addresses Death after he has lived a full life; not a life that has been cut short by disease. The only comfort in death is being welcomed into God’s Home, welcomed to live in the Presence of God as a person of repute. How we misuse the scripture because we are uncomfortable in “defending God” when He fails to perform as we would will Him to…The only comfort that I could offer my husband as he cried the bitter tears of disappointment is that he will be with the Lord forever.

The only verse that comes to me is the one that Job said to his wife when she told him to curse God and die. “Even though He (God) slays me, yet will I trust Him.”

This verse brings nothing. No warm, fuzzy,feel good sentiment; or future hope of prosperity, just a bare statement of faith. It is a stark, unpoetic prose that states that in the face of calamity, in the face of pain, isolation and disaster, I choose to still believe in God. I still belive. No warm words of comfort…just a statement of faith in a God that would appear as One that has failed me.

I have to rest on the fact that my God knows all of our days and He knows what is ahead. I don’t. The reason why my husband has to die from this terrible disease is beyond my ability to comprehend.Even when all hope is lost in my husband’s healing, I still must hope in the God that I serve.

“Even though he slays me, even though he removes the man that is the other part of my very self, even should I walk my remaining days without someone to share my life….yet will I trust Him to have a more perfect way than my own….

In the mean while, days run into nights, Pain of the soul is lost in disappointment. Pain in my “Other Self” compounds and I am loosing my husband to disease and Death.

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…