In The Shadow of Valentines….

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

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

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

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

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

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

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

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

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

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

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

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

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

With Each Passing Shadow

The days are settling back into the familiar routine. It has been a week since the Renewal/Ceremony. The doctor visits, the trips to the infusion center, the mountain of forms and mail that chokes out any conceivable space on my desk….

The Wedding/Renewal seems like a lovely fairy tale now, yet when I catch a glimpse of the dress hanging on the back of the door of our bedroom, it seems that there should be bit of fairy dust still clinging to it…

My husband isn’t feeling so well, now. He seems to be trying to catch one of the many viruses that is abounding in the doctor’s office. We have to go there at least once a week because of his blood work requirements. I hope that this isn’t the result of going into the germ infested place.

His hands seem paler lately. They are often cold to the touch and he complains of being chilled. So, I crank up the heat and swelter. No complaints….

This change in his overall health may be from the fact that we had to work outside the past few days to begin cleaning up the mess after the night of tornados. No one saw the source of the wind. All anyone could see was massive darkness, but the wind had to be over 100 mph to blow the old chicken coop off of its foundation.

The next day the winds blew almost as hard so the coop started to collapse on everything inside. We knew that we had to get things out of there or we would loose the things that we needed most in the spring…

Spring…oh, how I want it to come. In January, my husband said that he didn’t think that he would be here after March. Somehow, I am holding onto getting through March and if we get through March, then we should be able to get through April, that is when the new grandson is coming, then May and June…I want to hold onto every month and say, “See, you thought you wouldn’t be here, but now that you are, it is time to plant and look, there are the flowers….”

But, no matter, I see things are changing. My husband and I have always been a team. We play our instruments together. When we sing, we are perfect in our harmonizing and when we work, we are a team in everything that we do…

He wanted desperately to get the building off of the lawn tractor. We  need the lawn tractor. When the old tractor  finally broke down for the last time, I push mowed these 2 acres and I thought that I was going to die!!! Something that normally took a few hours, took me half of the day and I had to stop quite often to rest, but I did push mow the lawn and it looked good. So, saving the lawn tractor was top priority in rescuing our things out of the broken down shed.

Now, as we tackled everything in tandem, it was me that took the lead and it was me that came along side to pick up something that he normally would have handled easily. He would tire so easily and I would stop for a break, not because I needed it, but because he was out of breath and looking so very weak and tired.

As we toiled for the next few hours, I could see in his eyes his realization that he was loosing ground as well as muscle mass. I told him that I would start him on the protein drinks that body builders use. He said that might work.

On through the afternoon, we picked up trash, pushed and pulled lawn equipment and slowly made some headway in cleaning up this mess that was left in the wake of the storms. Then, we noticed that the shadows of evening we coming and we had to have help to get this done before darkness set in.

Before, we could call anyone, a neighbor stopped on his ATV and asked if we needed help. My husband nodded. It was a slow nod, as if it was a terrible admission of guilt. When the neighbor returned, there was in tow a younger man with him and then another neighbor next door came with a chain saw and another showed up with a tractor….

By the lengthening of the next shadow, the dead tree limb that nearly hit our truck was down,  cut up and hauled away. All of the tractors and garden equipment was out of the old, tired and worn shed and stored in the barn. Everything that needed attention was pretty much wrapped up and my husband had a smile of gratitude that would have lit up the early evening…everything was done by the beginning of twilight.

Later, he said, “Baby, we still are a great team.” I agreed. We always were a great team when it came to working side by side. Then I thought to myself how we had always worked as a team in the businesses that we owned, in the parenting that we did and in every area that really mattered.

I have always appreciated how we have worked as one. But, with each passing shadow from night till day, I seem to see him fading. Sometimes, when I look at him, it is as if I am watching him become more transparent.

Maybe it is the color of his skin that is fading or maybe it is the body becoming weaker, I don’t know. There are times when I look at him, I can almost see through him as he sits in the recliner. Yet, it is his will that never seems to fade. 

 It is his will that wants to see the face of his namesake grandson. It is his will to stay so that I don’t have to tackle the aftermath of the storms and the mess that they leave behind. It is his will that says to me, “I don’t want to leave you. But, I know that I am loosing ground.” If it were up to will, cancer would not have a chance in his life. His will is as strong as it ever was…

It was his will to have our celebration and it was a wonderful testament to his love and his desire to have something beautiful to remember. I believe that it has always been his will that has kept cancer at bay…yet, I know that it is the prayers, ours and others, that join with his will to live that has kept him past the time the doctors said he would be here on earth.

But, yet, I know that we have to yield to the Will of our Father. I am praying that it is His Will that will grant my petitions and prayers so my husband can stay and so that we can continue to be this great team…These are the prayers that begin the day and end with each passing shadow…it is the prayers….

Strange Shadows?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1.      Being threatened with a knife by your wife.

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

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

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

5.      Declaring bankruptcy

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

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

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

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

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

 

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

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

Walking Toward the Final Shadows

I was going to continue with my posting about my anger with God, however, my husband’s condition has worsened. He is in ICU with a bowel obstruction and he has low O2 saturation. Low O2 sat means that his blood isn’t being oxygenated like it should. The doctors are looking at blood clots in the lungs as one of the reasons for the problem. I am afraid that the problem is the tumors. They have taken up all the available space in his abdomen and there is not room. The tumors are pressing in on all of his organs. He is dying.

I need to write more, but I cannot. I haven’t had much sleep in the last 24 hours…..I need to write so I can sort all of this whirlwind of emotions. They need an outlet or they will be the same as the tumors and displace my sanity. I need to complete my thoughts about the Dangerous Shadows, but, for now, I need sleep. I need to return to the ICU before the doctors make their rounds. I need to be with him. I need to watch him breath. I need him to know that I am there with him and he is not alone.

In spite of my anger with God, I still need My Heavenly Father, the Lover of my soul.

I need God, Abba to hold my hand.

These shadows are so dark. I cannot see my hand in front of my face or feel my heart beat in my chest. I don’t know if I am breathing or not at this moment. I am numb.

In this darkness, I see my husband’s face. It is full of worry and pain. He is wondering if he is approaching the moment when he leaves me and this world or is it the time that we see the Hand of Living God suspend the laws of cancer by His Mighty Hand. My poor husband’s body is being ravaged by pain and he just wants to live. He wants to see the face of his unborn grandson. He wants to look into the child that will bear his name.

Oh, my Lord and Savior, reach forth you Hand in mercy. Please, be our Gentle Shepard and lead us with Your comfort that You speak of in your Psalm. Teach us to trust You more and to hear your voice as our hearts cry out in desperation.

Please,preserve his life, Father. Please, preserve his faith. Please preserve our hope.

In the name and by His authority, Jesus, the Christ I implore You,

Amen.

Journey Into The Shadows Part 9

This would be a 12 hour procedure with a two week recovery in the hospital. This was major surgery. This was life saving surgery and this surgery was going to take place in 10 days.

     While I am writing this, I have to come to the present.. Yesterday, I just sent off two CT Scans asking the IU surgeon to look at them and tell us if there is a chance for another surgery. So, two years later, we are where we started. My husband wants these new tumors out. They have grown back bigger and they are not like jelly, they are hard tumors. I don’t hold out hope like I did two years ago. I was so full of hope then. I remember that time of our one chance to grow old together…..

      We were without income. My husband’s disability insurance was a cruel joke. It took 3 months to get it and it came in one lump some. By that time, our living expenses swallowed the money up like it was nothing. Thank God for those wonderful people who came along side of us and walked the financial troubles with us. However, when it came to money for transportation or lodging while my husband was there for the surgery and recovery, we had nothing to spend.

       I contacted the social services at IU Med and found that there was a program with the Westin hotel that would pay for three nights stay for anyone who was having surgery for cancer. That was wonderful and the lady took our information down and sent me vouchers. I contacted another local agency and they gave us a gas card worth $50.00. That took care of getting us there.

      The weather report came in saying that on the day of my husband’s surgery a hefty snow storm coming into the city. When I spoke with the social worker at the hospital at the beginning of the week, she urged us to come the night before and that way we would not be caught in the weather. So that is what we did.

      My husband’s brother drove us over to the hotel and we checked in early on the day before the surgery. By this time, my husband could feel the tumors dropping into the lower part of his abdomen. His abdomen was getting larger and I could see the muscles in his arms and legs wasting. The color of his skin was a grey, death like color. I knew that this surgery couldn’t come fast enough. Without this surgery, I don’t think that he would have made it another month.

      When we registered and went into the room, my husband laid down onto the bed and went to sleep. He slept from around three in the afternoon until the next morning. I had the afternoon and the evening to think and fret over the future. I was questioning whether this was my life because I didn’t recognize any part of this life at all. I was not to be a widow nor was it to include this kind of drama. We were to work the next 20 years to overcome the losses that we had in business and we were to retire back to the little family farm and enjoy our grandchildren. It would not be a easy life, but it would be the “golden years”. He wasn’t suppose to die and I was not suppose to be alone. We had been married just 13 years and we had been married to other people and missed our youth. God, where are you????

      It was a time of terrible loneliness and I was afraid, yet I knew that he was not to die. I did pray this prayer and that was that if God could see that he was not to overcome this cancer, then let him die in surgery. That was my fleece and even though I wasn’t prepared for him to leave me, I knew that I needed this sign and somehow, I would be at peace.

      The morning came and we were to be at  the hospital by 6 AM. His brother came to pick us up and he took us to the registration. When we walked into the lobby, it was full of people waiting to be registered. I wondered how in the world would we get through with all of this before the time of his surgery, but I guess this was normal. In relatively short order, they called his name and we were on our way back to the surgery prep area. He said that he didn’t feel good, but that he was glad that the surgery was now.

      He got into the hospital gown and I took his clothes with me. We were allowed to wait with him until they were ready for him. His brother had prayer with him. My son was with all of us and I was remembering my prayer. I didn’t sleep well and I womdered if last night may have been my very last night with him.

      Little did I know until after the surgery, my husband had prayed the same prayer as I prayed. He asked God to take him if he wasn’t going to be able to overcome this cancer. All I knew when I watched him walk through those double doors into the surgery suite that it was in God’s hands and I had released the love of my life to go…… 

Journey Into The Shadows Part 8

Waiting for the appointment day felt like an eternity. My husband was feeling the tumors growing and falling down to the pelvic floor. At the same time, his color was changing and his weight was starting to drop. He looked at me and asked if I thought that he would be strong enough to survive the surgery. At that moment, I didn’t know, but in faith, I looked at him and said that he would be. I knew that the only way for him to survive this surgery was through prayer. 

I called the ones that were at the prayer meeting and updated them about the surgery and the details. They organized a prayer vigil so that prayer would be on a 24-hour basis. These people were amazing. Not only did they pray, they brought food, fruit and scriptures that were of hope and miracles.

There were two couples that said that they were instructed by the Holy Spirit to help us monetarily. This wasn’t just a one-time kind of gift. They knew that we had no income and that we would not be receiving disability benefits for another 4-5 months. They supported us until the time that the disability checks started to come.  They did not know us personally. They knew us through my husband’s brother who was their pastor. They knew Christ and they were our “brothers and sisters”. These kind and willing people took us into their hearts at a time when we needed friends…true friends.

The generosity of these folks caused me to understand why my husband and  I were brought to live in this little town. God is so very faithful. He knew moving to this depressed and oppressed little town was not something that we would  choose. All of the circumstance that caused us to move and then here began to sense now.  We would not have had this kind of support had we stayed where we were living.

Finally, the day of the appointment with the surgeon came. We drove the hour’s drive in silence. I was wondering how soon the surgery would be scheduled. My husband’s thoughts were of survival. It seemed like the interstate was stretching ahead of us forever.

When we arrived at IU Med, there was construction of the new cancer center; it was a maze of blocked streets and one way drives. Finding a place to park was the first obstacle. I think that we parked in the wrong place because  to go into the correct entrance, we had to walk about two city blocks. It was no better one the inside. The next step was to find the “clinic”. It was in the basement. There were three sets of elevators but only one took you down to the basement. Once in the belly of this building, I didn’t know if I would be able to find my way out of this labyrinth of halls and steam rooms.

We had to wait for an hour and a half to get to a room. Once in the room, then all of the current third year med students came in to examine my husband’s huge belly and then they asked a million questions. My husband’s history was very unique and very rare. They may never see another patient like this, so they were very interested.

At last, the surgeon entered. He was a kind man with much compassion. He said that this was the second patient he had with PMP or “Jelly Belly”. He wanted to perform this surgery ASAP. That was welcomed news. I told him about the DC surgeon wanting $25,000 for performing the surgery and that the surgeon wanted to remove all of the colon  when it was clear that my husband did not have colorectal cancer. I told him about the allergic reaction to Oxcaliplatin and that I was concerned about the chemo drugs being placed directly into the abdomen.

The surgeon was shocked by the amount of money that the DC surgeon wanted. Of course, I made it clear what I thought of that request. The IU Med surgeon was very gracious to us and wanted to assure us that the money was not his requirement, nor was the massive unnecessary removal of organs. He stated that my husband’s cancer was very unique and he comment that my husband’s case was the second one in the past month. At least I knew that he wasn’t “rusty” because he had just performed this surgery recently. He also answered my concern about removing all of the bowel on the belief that the cancer would develop there in time so it needed to be removed and a colostomy needed to be done. He said that he didn’t  believe in removing organs that were not effected by the cancer. He also said in his opinion, he didn’t see that the intra abdominal method was more effective than IV therapy.

I breathed a sigh of relief. I knew that my husband would have a difficult time emotionally with having a colostomy and I was fearful of an allergic reaction of the chemo in the abdomen. How would you treat a contact reaction if it was all in the abdomen?

The surgeon was very forthright about the need for the chemo after surgery.He told my husband that if my husband was not going to do the followup chemo with a different chemo drug then he wasn’t going to do the surgery. The surgeon told of a case where the patient refused to do the chemo after surgery and returned to him in less than a year and the abdomen was larger than before. My husband agreed to the after surgery chemotherapy.

Because the spleen was going to be removed, the surgeon wanted my husband to have vaccinations for flu and pneumonia. He wanted my husband in the best health possible and he wanted preventible complications eliminated from these viruses. In all, my husband was having his spleen, gallbladder, right side colon removed and the entire abdomen and pelvis debulked of tumors. This would be a 12 hour procedure with a two week recovery in the hospital. This was major surgery. This was life saving surgery and this surgery was going to take place in 10 days.

Journey Into The Shadows Part 7

As we were wrapping up all of the questions,  the woman said that we needed to pay the surgeon $25,000 dollars up front before he would do the surgery. Twenty five thousand dollars!!!!! Why did we have to pay the money before the surgeon even laid eyes on my husband.  She might as well said a million…How outrageous!!!!  

I was shocked. I said that we were under the impression that our insurance was acceptable. She proceeded to say that the surgeon did not accept any insurance payment for his services and that he required this amount of money prior to seeing any potential client.

I explained to this woman that we had no income at the moment and that we had filed bankruptcy just 2 years earlier because of the failing of our three businesses. Those two factors eliminated any borrowing of money for the procedure. We did not have anything but the insurance. She suggested that we should go to the trucking company that my husband worked for and see if they would cover the cost.

I thought how presumptuous!!!! How arrogant!!! It was clear that this doctor and woman had no clue about how hard it was to be in the trucking industry. Because of our businesses, we knew how terribly hard it was to have a bottom line in a small business. We knew that this suggestion was pure presumption and greed. There was absolutely no way any employer, even a willing employer, could do this for an individual employee. Should my husband’s employer pay this money for my husband, it would obligate itself to do the same for the every other employee or the company would be open to a discrimination suit.  My husband’s company was very good to us and quite sympathetic towards him, but they could not do this and I was not about to make them feel uncomfortable by asking them for the money.

I just couldn’t believe what this surgeon was asking of us. It wasn’t just the money. The questions that this surgeon asked made it clear that  he wasn’t going to accept just anyone who had PMP. He had specific health requirements i.e. age, overall good health, non smoker, (they made an exception for my husband) and the questions went on and on. These questions revealed that the surgeon had an agenda. It became clear to me that the surgeon was making careful choices in regards to on whom he would perform this procedure. He was looking for patients that would support his proposed survival rate for his FDA clinical trial.

From a medical and scientific point of view, I understood exactly what the surgeon was doing. This was the medical example for squewing results for a particular benefit.  In teaching, it would be teaching towards the test scores to retain or obtain federal funding. In research and development, it would be throwing out data that didn’t support the marketability of the product for the purpose of getting it on the store shelves. It was no mystery as to why this surgeon accepted my husband as a patient. It was not because his life depended on this surgery. It was because he was young enough and strong enough to prove survival and he would not risk the FDA outcome that this surgeon was trying to meet.

Because I have been in the medical world through my nurses training, I understand the “why’s and wherefore’s”, but this was my husband, the love of my life, a father to children and the grandfather of unborn children. To this surgeon, my husband was valued but not for the reasons that really matter. The true meaning of this man’s life was without merit to the surgeon. Did I want the hands of such a callous heart holding My husband’s life? Absolutly NOT!!! This surgeon was very suspect to me and I was convinced that he lacked the kind of ethics that I required in a provider for my husband’s care.

 The hope and joy that I had felt just a few days ago was beginning to plummet. I was devastated. I was angry. How dare they treat this man’s value in terms of their benefit!!!!

 What we were going to do now? I called the oncologist to tell him of the conversation with the surgeon. He was shocked at how unreasonable this surgeon was in regards to the amount of money required of us. The oncologist was in disbelief that a doctor would be so audacious, yet when I stated that I believed that the DC surgeon only considered my husband because he would further the procedure’s acceptability towards the FDA goal, the oncologist seemed uncomfortable with the statement.

“Brothers to the end” was the phrase that came to my mind. I saw this stance many times while I was nursing. Doctors would not police themselves or set in judgment on positions of ethics. Even when they knew that there was a “bad apple” in their “brotherhood”, they would do nothing because they were “doctors” and they depended on each other’s silence when it came to matters of mistakes or wrongdoing. All of this just re enforced the reasons as to why I left nursing 20 years earlier. It was this very set of circumstances, this devaluation of the patient, this lack appreciation of the patient’s life in terms of quality that caused me to leave and to go into the business world. I expected this kind of “cut throat” behavior in business, but not in healthcare.  While I was nursing, I loved my patients and I was a very good nurse to them, but I could do nothing about the doctors who would walk into the room, drop the bomb of diagnosis and leave in their wake the patient to a state of dispair and hopelessness. Please understand, I am aware that not all doctors are like this. In my experience I saw enough to realize that patients needed advocates. As a nurse, I could do little to be that advocate. Thank goodness, the patients know that they do have rights and it is in the patient’s best interest to be the one in charge of their own care.

 But, what were we going to do? I could see my husband’s abdomen increasing at an alarming rate and we had nothing with which to fight this cancer? Our oncologist said that he was going to call the IU surgeon that he had originally mentioned to us.

 In a few days, our oncologist’s nurse called to say that we had an appointment at IU Med at the end of November. Not only did the surgeon at IU Med agree to take my husband as a patient, but he agreed to accept what the insurance would pay and not charge us anymore than the insurance payment. The DC surgeon wanted $25,000, but the IU surgeon was willing to accept $4000 for a 12-hour surgery. I was so grateful.  I believed that God heard our prayers and I asked that God bless this man for his kindness.

          Waiting for the appointment day felt like an eternity. My husband was feeling the tumors growing and falling down to the pelvic floor. At the same time, his color was changing and his weight was starting to drop. He looked at me and asked if I thought that he would be strong enough to survive the surgery. At that moment, I didn’t know, but in faith, I looked at him and said that he would survive. I knew that the only way for him to survive a 12-hour surgery was through prayer. Prayer was the only way that my husband would stay on this earth no matter what the medical treatment. My husband was going to live because we believed in an Almight God and the people were praying.

Journey Into The Shadows Part 6

A response to the doctor’s question said that there was a surgery…..A SURGERY…..I stopped reading because I had almost fallen out of my chair. The oncologist told us that there were no surgeries for this cancer. Right in front of my eyes was a doctor who said that there was a surgery. There was HOPE!!!! 

           I could hardly contain my joy. I quickly printed the screen and went back to the site. Right in front of my eyes was  the exact same medical history of my husband. It was looking at a reflection of my husband’s case….appendiceal  cancer with  metastatic mutinous adenocarcenoma…. expanding girth….yes, this is the same as my husband’s cancer. Best of all, there was a surgery that was called, “De-bulking”.

            In the online case history, the patient had the right side of the colon removed as well as other surrounding organs that could be removed. The gelatinous tumors were scooped out of the abdomen by hand. There were pictures of the procedure and the site noted that the procedure was being done at the University of Texas, Galveston.

            I was setting out in my mind how we could get to Galveston Texas. But first, I had to call the oncologist and ask him why had he not known of this procedure and why had he not recommended it for my husband.

            At that moment I was full of every emotion that a body could experience… joy, elation, hope, did I mention joy,…then the negative emotions hit me. I was angry, no I was passed that emotion, I was enraged. Whatever trust that I had in the oncologist was totally shot. I couldn’t wait until morning to call his office and set an appointment. I wanted answers and I wanted to know why had he not spoken of this surgery.

            The next morning before calling the oncologist’s office, I decided to go back to the site and make sure that I had all of the information contained on the web site. I went back through the history on the computer and when I clicked on the URL address, it displayed the message that this was a secure site and, unless I was a professional with a registered password, I would not be allowed to enter. What!!! I was just at this site less than 12 hours ago and now I was not allowed to enter.

In that moment, I was so glad  I printed off the screen and I was in awe. If I was not allowed access today, then I was “allowed” to be on that site last night by something or Someone. I knew who allowed me on this restricted site. I knew that God was allowing me to find this information because this was what we had been praying for in that prayer meeting. There would be many who would say that this kind of thing happens all of the time and it was just a glitch in the security of the site. I wasn’t going to listen to anything other than my God, my Prayer answering God had heard my cry and made a way when there was no way.

I gave up on finding a way into that site and called the oncologist office. My husband’s appointment was set for two days from now and I couldn’t wait. It couldn’t get here fast enough for me.

I called our friends who had been praying and I called the kids to share in this moment of joy. I was beginning to learn that when these remarkable things happen to rejoice in the moment. There would be no guarantees that my husband would be able to get the surgery and I knew that was a real possibility. But after having day after day with hope slipping from us, I was going to relax, rest and rejoice in this wonderful moment. The lesson learned through that moment has sustained me. Today, no matter what the circumstances, I try to find “joy in the moment” kind of things. It goes a long way in helping with sanity. My folks would call it, “Counting your Blessings….name them one by one….”

The day finally arrived for the appointment. I made sure that I had the printed information from the “Doctor’s Only” site. I was looking forward to seeing the oncologist’s face when I showed him the printed information. I wanted to see and hear how he was going to explain not mentioning this surgery as an option for my husband’s treatment. It was the first thing that my husband had asked for at our first appointment. He specifically said  that he wanted these tumors removed.

In retrospect, the oncologist didn’t say that there was no surgery, but he said that the chemo would act like surgery by reducing the size of the tumors. I couldn’t  understand why he would keep this procedure from us. Maybe he thought that we couldn’t afford it and it was possible that we may not be able to afford it, but, nonetheless, we should have had the option presented to us.

By the time of the appointment, I wasn’t as angry and upset as I was when I discovered the surgery. We sat in that sterile like room waiting. My husband sitting on the table and I with the paper in my hand, the doctor came into the room. I felt immense pleasure when I handed that paper directly into the oncologist’s hand. I felt like I had handed him the keys to a miracle.

I explained to the oncologist that I had done some research and I found this web site with this information on it. I stated that we wanted to pursue this surgery and the sooner the better.

He looked kind of funny. He said that this was a controversial surgery and the oncology community was not convinced that this procedure was effective. I stated that we had nothing to loose. My husband’s allergic reaction had removed chemotherapy as an option for us and that he had wanted surgery from the beginning. Why was this not available to him?

When the oncologist saw our determination, he said he knew of a surgeon an IU Med that had been trained in this procedure. He said that he would call and see just what were the possibilities. Of course, we thanked him and left the offices. I felt like I was walking on air. We were one step closer to a medical form of hope. We went home to wait for his call.

In about three days, we received the call from the oncologist for which we had been waiting. Instead of IU Med, the oncologist said that he contacted the surgeon who pioneered this surgical technique and he had sent all of my husband’s information to him in Washington, D.C. The oncologist stated that my husband looked like a good fit for the surgeon’s study and that his office would be calling us. The oncologist’s nurse had called our insurance company and she said that this surgeon accepted our insurance. I was elated. I began working on a way for my husband to get to Washington D.C.

I found a service offered by people who owned private planes. They would fly cancer patients on their planes to treatment centers at no cost. The closest airport for these services was  Chicago. Indianapolis didn’t have the kind of traffic to support the service. That wasn’t a problem because we were 4-5 hours from Chicago. That covered the travel part of the quest for my husband.

The next thing on the list  was accommodations. My son is a 100% service connected disabled veteran and part of his benefits is housing for medical treatment. This included himself or members of his immediate family. My son and his wife were preparing to meet this part of the problem. My son was finding out which base was closest to the hospital where my husband would be having surgery. My son and his family would be coming with me to DC.

Working on the logistics and accomendations helped to keep me from waiting minute by minute for the phone call from the DC surgeon’s office. Finally, the call came a week after our last visit to the oncologist’s office. A woman identified herself as the surgeon’s nurse and wife. She explained that she needed to qualify my husband to determine his eligibility for this surgery. She explained that they would be removing part of my husband’s colon. We expected this. She then said that my husband would have to have a colostomy. I asked why would he need a colostomy without knowing whether there would be enough bowel for an end to end anastomosis. She explained that it was the surgeon’s policy to remove as much of the bowel as possible. I said that my husband’s tests showed that there was no cancer in the colon. She said that the cancer would invade the bowel so the doctor eliminated it as a possibility by removing as much as possible.

I didn’t like the sound of that. I didn’t believe that you would want to remove an organ because of a possibility that it would be invaded by the cancer. For quality of life, would you not want to keep as many non affected organs so as to remain functional? What this woman said next was something that I liked even less.

     The surgeon’s wife said that we needed to pay the surgeon $25,000 dollars up front before he would do the surgery. Twenty five thousand dollars!!!!! Why did we have to pay the money before the surgeon even laid eyes on my husband.  She might as well said a million…This was outrageous!!!! It was impossible!!!!

Journey Into The Shadows Part 5

Above all else, we needed God. We were holding onto the 23 rd Psalm,     

                     “Yeah, though I walk through the Valley of the Shadow…  “

     The meeting with our friends for prayer for my husband’s healing was held two days before the birth of my husband’s grandson. There were about 8 people around our dining room table, two men and six women. They were sincere and it was a comfort to have those that we knew well and some we didn’t know well to unite in prayer for the purpose of asking God for my husband’s life. I wish that I could say that there was a reassuring confidence that our prayers were heard and we were assured of my husband’s life to be spared, but I didn’t feel that. I felt that everyone understood that this was a fight and it would be a hard fight. Nonetheless, these good people were ambassadors of hope, God’s hope, and I will always be grateful for their support at that time. Even today, I know that if I need that kind of prayer, it is but a phone call away.

     I didn’t mention anything about the cemetery plots at the prayer meeting. The shock and frustration I felt would be a detraction from the purpose to why they gathered here. Even though I felt that this blow was almost as devastating as the diagnosis I wanted the focus to be on God and my husband.  I did mentioned it to a few close friends and they were as perplexed as I was. Sometimes, you just need to see the face of a friend when you tell them something like this. It is in their face that you can see if you are being silly or whether it is as bad as you feel that it is, and by their facial reaction, it was bad.

     I made the call to the children to keep them abreast of the “drug fever”; their father’s decision to not take any more chemo, and the prognosis. I could tell that they were trying to take all of this in, but it was really not registering. It was just a news bulletin. I knew that the reality just hadn’t hit them as yet.

     As with most cancer patients, in the mist of the shock of hearing that cancer is robbing you of life, you immediately turn your thoughts to your children. It is the realization that you will not be seeing the milestones of your children’s lives as well as the remaining milestones of your own life. As bad as it hurts, it is the loss of watching your children’s lives grow and develop like a new rose that stings so deeply. The feeling of injustice can not be helped at this time. It feels so unfair. When my husband was told of the diagnosis, his oldest daughter was weeks away from delivering her first child; my husband’s first grandson. In fact, my husband was receiving chemotherapy through a pump while she was in labor. He didn’t feel very well, but he wasn’t about to miss his grandson’s debut. It seemed surreal that the threat of death was in the same room as the beginning of life. I know that he was feeling grateful in between the waves of nausea to be able to see this very moment.

     Recently, we were told that a new grandchild is coming in the spring. I could see it in his face that he had mixed emotions. Normally, he says very little, but it is the furrow in his brow the gives it away. When he has that on his face, I know that he is processing something and he really doesn’t want to discuss it with me. That is when, right or wrong, I tell him that it does absolutely no good to keep it away from me. I already know what is on his mind. Then he looks at me and says, “OK, what am I thinking?” When he said it this time, I said, “ You have mixed feelings about this baby. You are happy that there is another grandchild coming, but you are afraid that you won’t be here to see it.”The tears began to roll down his face. He was feeling how unfair it was that he didn’t have the expectation of seeing this wonderful baby. How cruel it is to the grandchildren that they may not have any memories of him like the ones he has of his grandfather. He is only 53 years old and he should be able to see the birth of his grandchildren, He should be able to see them begin school, watch them play little league or soccer; and watch them walk down aisle to Pomp and Circumstance at their graduation.  That was the reason for his tears. It was joy in the midst of pain, a bittersweet moment of life.

     With each passing day, we could see his abdomen growing. He looked like he was pregnant, and in a sense, he was. It wasn’t life that was waiting to be born, but it was death encroaching on his life. And, the time was drawing near for delivery.

     I began to live on the Internet. I was researching this rare cancer, the treatments, the research facilities and anything that could bring hope to us. Hurricane Katrina hit New Orleans on his 54^th birthday. We had filled up the vehicles with fuel in anticipation of the shortages. We bought food with what we had left from his last check from work. We knew that this was a kind of devastation that would have lasting effects and it would reach up the Mississippi to where we lived. No one knew just how far reaching it would become.

     It was while I was online keeping up with the hurricane that I discovered a web site that informed me of a surgery that was pioneered for this kind of metestatic cancer. I had put PMP or psuedomyoxoma peritenia into the search bar. It took me to a site like nothing I had seen before. It was a message board where doctors posted inquiries about treatments for their patients. On this site, a doctor stated that he had a patient who had appendiceal cancer with metestatic PMP and he was asking if there was treatment other than chemotherapy for his patient. There was a response to the doctor’s question. It said that there was a surgery…..A SURGERY…..I stopped reading because I had almost fallen out of my chair. Our oncologist told us that there were no surgeries for this cancer. Right in front of my eyes was a doctor who said that there ways a surgery. I could not contain myself….There was surgery…..there was HOPE!!!!

AS HOPE FADES INTO THE SHADOWS

I see it in his face. I feel it in the atmosphere of the home. Even though he is not talking about his feelings, I know that the loss of hope is growing and I know that no one survives life in any form without hope.

I have felt over the past week such a feeling of loss. It began with that dream which left me with the realizations that, should my husband die, I would have no one to comfort me when the night terrors strike. Such a pervasive feeling of dread swept over me and affected my mental state for days. This emotion was so intense that I know my husband was affected by my state of despair and that in turn, affects his state of hope.  I know my recent despair hasn’t been the only thing may have caused this change in him. There have been other events that have affected his outlook.

Because of the rarity of my husband’s cancer and the lack of research on appendiceal cancer, we have always known that the medical profession was limited in their ability to offer treatment. But, lately, we feel that my husband has faded into a place that most terminally ill people find themselves and that is a place called “Limbo”, the proverbial “crack”.

I define this kind of existence as a place where the doctors have exhausted their best efforts in treatment and they have nothing more to offer. In many ways, I liken it to falling off of a crevice into a deeper part of this Valley of the Shadow. In this journey through cancer, my husband was a patient of value and he was involved in an intense treatment program with routine doctor visits that noted his progress. He was followed with CT scan, blood tests and other ways to measure how he was doing. Over this extended period of time, he became familiar with staff and other patients that evolved into a social structure All of these visits added value to his life more from the socialization than the physical treatment.  After the realization that there is nothing more to be done,  all of the treatments, progressions and the social values have become a fading presence in his life. He seems to begin to fade from the doctor’s focus. The lack of his body’s response to the therapy has caused the doctors to relinquishes their efforts. This loss of  focus by the medical profession intensifies all of the other areas of loss in his life. It is the loss of hope and the feeling that, because he isn’t responding to any medical treatment, he is of less value than those who are responding to the treatments. He is in Limbo as to how to proceed forward and even though the doctors aren’t pointing him in a direction, he desires to go forward.

I witnessed this Limbo with my mother who also was a cancer victim. She had multiple myeloma. Like my husband, she, too, was in the advanced stages of the disease when she was diagnosed. But her treatment was not aggressive. They gave her limited treatments and focused on keeping her out of pain. How ironic that one of the most difficult debates with the doctors was over pain.  At the end, the doctors debated about the value in setting her broken arm. They saw little value in setting the arm because they believed that she was just a month or two from death. I remember bringing to their attention that 1 to 2 months is a long time to suffer with bone pain from a broken arm. They saw no value in giving her any treatment. It was not the families request, it was their attitude regarding the need to do anything for a terminal patient. It was a quality of life issue and it was offensive that they devalued her life in that manner. The doctors expected my mother to degenerate and they didn’t expect to treat her because she was approaching death. Until the time of her demise, she was “out of sight, out of mind.”

Recently, the land of Limbo was revisited when my husband and I experienced an awkward tumble into the abyss of the proverbial “crack” when we were referred to an oncologist who practices in a top facility in the state. This facility is nationally recognized for its oncology department. (They treated Lance Armstrong’s testicular cancer and are credited with his remarkable remission). To make a long story short, it took over 5 weeks to procure an appointment with the specialist. This wasn’t because of an over crowded, overbooked  schedule, but it was because no one in our oncologist office remembered to be persistent in following up when there was no response to messages left on the specialist’s answering machines. When the appointment was finally set, it was an additional 2weeks (that is 7 weeks) from the time we last saw our oncologist. Two more weeks have passed and we have not heard anything from either oncologist.  It is going towards 9 weeks since all of this was begun and still no discussion of treatment. After calling our oncologist for the past two days to determine the status, one of the staff set an appointment with our oncologist, We still do not know if there has been any discussion between the two oncologists. When we are seen finally seen in our oncologist’s office, it will be 10 weeks from when we last saw our oncologist and we still have had no communication regarding possible treatment or planning on how to proceed forward. This is not acceptable.

Why so long? It would seem that we are out of sight, and therefore, easily forgetten. I confess, time slipped up on me and in disbelief, I had to think how long had it been since these visits. This kind of neglect on everyone’s part sends clear messages to my husband and to other patients that find themselves outside of active treatment, but not ready for hospice. The message may sound something like this, “You are a fading life force and you remind us of our failure. We want to forget just how powerless we are over this monster called cancer. We forget that you are still here in spite of our inability to give you treatment. We really don’t know what to do with you, so why are you still here?” These words would never be spoken to a patient, but it doesn’t mean that the communication isn’t made through their neglectful lack of perseverance.

Why is my husband still here? It is because we never lost hope in the healing ability of God, in our love for each other and our trust that even cancer serves a purpose in our lives.

Because of this, I know that fading is a great danger as you Walk Through the Valley of the Shadow. One misstep into the crack of complacency can cause hope and life to be lost. Lord, please help us  to not acquiesce to other’s neglect. Lord, forgive them; they truly do not know what they may be doing by stealing hope from those who need it most.  And Lord, help us to find a way of keeping hope alive because we know that You are our hope and nothing else. Amen