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…… 

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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.

When Rain Comes To the Valley

Tonight the rains are filling the skies and  I am listening to the drops on the house. It has a bittersweet sound. We need the rain. The summer with its blistering heat has dried and cracked the ground. The grass had an unfamiliar crunch as I walk on it. My feet find no joy. The grass has withered and left it with a straw like quality. My heart knows this feeling. My heart feels the dryness and the deep cracks that the burden of this cancer has left me. 

All of this summons my thoughts of fall and the melancholy feeling of knowing that in the Autumn’s splendor there is a promise of biting winds, frosty mornings and bone chilling cold. It is on it’s way. The doctor today tells us that his days are approaching the coldness of death and the end of this journey is on our horizon. My heart feels numb from the bone chilling reality as these words tell of a changing season. A season of loss, of mourning, os change, all of this begins to seep deeper into my consciousness.

Fall time has always been a time for mixed emotional anticipation. As the with the beginning of Fall, the hues of brilliant leaves’ color captures me in a moment of wonder at the Creator’s artisitic creativity. As the autumn progresses, the joy of the crop’s harvest, is anticipated. It becomes a time of frenzied labor. Working day and night to bring it in, the days are full of busy preparation for the rewards of the hard earned planting of spring. Fall is concluding and a longed for and hard earned rest is awaiting. The earth needs it’s rest as does the laborers. With this rest comes the Fall Festivals and the holiday of Thanksgiving. And then it is the promise of Christmas’ coming and it’s lightening speed approach.  Fall should have a subtitle; Season of Change.

Tonight, the melody of the rain, causes my thoughts of change that is coming for my husband and for my life. For my heart, it is fast approaching  winter in this Valley of the Shadow of death. Tumors are becoming like huge pumpkins. Their size are encroaching onto every organ. These giant “space” monsters are crushing him from the inside out. They are consuming every inch of the abdominal cavity and no one can stop their growth. They are bringing a harvest of death.

The family doctor asked if our oncologist discussed the ending of days. This discussion has not happened. So far, we have found the oncologist forthright and always compassionate, yet she seems unable to broach the details of “The End”. Our family doctor has proven to be a true friend and he knows my husband well enough that he  proceeded to give us the unwanted but needed details of this journey’ conclusion. 

I tried to appear strong for my husband’s sake. Inside, my heart was trying to close my ears to the words of conclusion. I cannot bring myself to think about this horizon without another dawn. All of our years together will yield a premature harvest without the reward of comfort in my “golden years”.

Tonight, I am filled with thoughts and sleep doesn’t come to me. I am caught up in the details of the approaching end of this journey. I suppose I am not ready to view the final destination even though it is in sight. Somehow, I have grown accustomed to this Valley. Cancer has brought us a lifestyle that we didn’t want, but we  adapted to CT scan, tests, blood draws, pain management, office visits….it is surpising how this kind of living slipped into this way of life.

In the days after the diagnosis, all I wanted was a normalcy. Any glimpse of the life that we once lived was welcomed and appreciated. I wanted conversations without cancer as the topic. I wanted to go for a visit and see friends that did not have this sad pity that I saw in their eyes. I longed for simple things like going to dinner and enjoying it as a  “date”. 

 Without even realizing it,  the past two and a half years introduced us to a new normalacy such as chemotherapy, CT Scans, blood draws, pain management, office visits. Doctors and nurses became our new circle of “friends” Of course they are no substitute for the social activities like going to friends houses for cards or even general conversation of grandchildren and the their latest antics. We have lost the joy of planning for the holidays with Thanksgiving dinners and Christmas shopping. Somehow valley has overshadowed the simple pleasures. It has become a strange kind of “home”.

Now, the end of the Valley is not far ahead. We just don’t know if the coming to the finality is a falling off of a cliff into a endless abyss or is a plateau the leads into the last sunset. Is is climbing a precipice and leaping into the unknown. The Valley always seemed to stretch forever before us.

When the doctor said that the end would be kidney failure or occlusion of the bile duct in the liver, he didn’t hint if there would be loss of consciousness, days of intense pain, or a morphine induced semi conscience state of existence. Will my husband be aware of those around him? I believe he will hear everything but his body will become a trapped state of existence. I want to stop right here because I know that he will be upset to think that he may not be able to respond. It is the unknown that is hard to bear in this suspended animation.

My husband believes that to be absent from the body is to be present in the presence of Jesus. It isn’t fear of death that causes him concern. It is the final steps to this journey that causes him concerns. No one can tell him how painful kidney or liver failure will be. I can’t answer his questions because every one is so different. I don’t know.

I have held onto hope for his healing and I have envisioned his waking up and discovering that the protrusions in his belly to be down with a gradual shrinking taking place. That was my summer season. Laboring in prayer and standing on the “substance of things not seen”. But, today the words that were spoken became the reality this has been the season of drought. The desert like conditions ensure that there is no harvest for the labor. All of the treatments, surgeries, alternative therapies, all are drought with no hope of harvest. We are in a famine and starvation of hope is progressing.

How will I deal with the realization that this fall, harvest, autumn is without hope and the realization that the chill of the winter is approaching quickly?I am not prepared. I don’t know if I can ever be prepared to be without the love of my life. The bigger question is will I find the desire to go ahead with life without him? Will I be able to call this “living” or just trying to fulfil my numbered days? I have little desire to live without him in me right now and I know that is dangerous. Because we are one in almost everyway, I am experiencing a death inside of me; my heart is failing to thrive.

Approaching death manages to cause us to take an inventory of our living. We must live with our regrets. Even though  he and I dated when we were young and married other people, we have always been the bonded as one life. It took 25 years for us to find each other again. Regret over the wasted years of giving undeserving people the years of our youth to those unappreciative people is a hard regret. Our only harvest for those lost years are the children produced by those unordained unions. These children will be good fruit of those terrible mistakes…..again, it is the thoughts regarding the children and grandchildren that bring the melancoly. These grandchildren are the seed for the spring harvest. These seeds of the future are the true harvest of our lives. In them, there are no regrets. Now the fall rains have come and this change in season is signaling that our harvest is lacking, other than our children.

Fifteen years is not enough for our lifetime together. I feel the full definition of the word melancholy, depression of spirits : dejection . I truly feel cheated and I want time to stand still. But like the fall rains that strip the trees of their brilliant colors, I am loosing my glory and the summer of my days. I am being stripped of the love that only he brings to my life.

I feel like my tears are the drops that are falling outside of the window on this cold dark night. I am not ready for the change of this season, not the end of this Valley of the Shadow…..I am not prepared.

I am mourning the days ahead. It is the verse in Isaiah that brings me small comfort, but I will take the smallest comfort right now. This is my personal paraphrasing, but it is my hope.

” To all who mourn….He, my Heavenly Father, will give a crown of beauty for ashes, festive praise instead of despair….

I will be like great oaks the the Lord has planted for his own glory

My heart will rebuild the…. ruins…

My God will revive me though I have been deserted….

Instead of shame and dishonor, I will enjoy double share of honor…

for the beauty for ashes, a joyous blessing instead of mourning…”

 

 

 

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 54th 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

Journey Into The Shadows Part 4

talk about a low blow…. so far, the last 24 hours were real stinkers….we needed to go home. We had phone calls to made to the children….

     When we arrived  home, we were exhausted from the emotional roller coaster that we had been riding all day. In the last 24 hours, we endured the physical ravages of “drug fever”, the emotional effects of the decision to stop all chemotherapy, and the utter shock and confusion of my husband’s father selling cemetery plots out from under us. It was overwhelming.

      It was my intention to call the children and update them as to the events of the past 24 hours, but instead, I called a couple of our friends and asked them to organize a prayer meeting for my husband’s healing and my sanity. We had been living in a twilight zone in the past month and it was time to stop and find direction as to how we were going to deal with all of this.

      My husband’s brother and father were pastors of a local church. Of course, the church had immediately gone to prayer when the congregation was informed of my husband’s diagnosis. But I saw, that without a consorted effort involving sincere, faith believing and dedicated people to help us pray, we were not going to deal with all of these events that had changed our lives in a blink of an eye.

      After the decision to stop chemotherapy, we had few options and prayer was the only resource that I believed was an effective option. From a medical perspective, studies have shown that prayer was instrumental in helping patients to handle pain. Praying people had better results with all kinds of treatment because they usually had a feeling of hope and their physical results were better than those who didn’t meditate or pray. Beside and most importantly of all, my husband and I were Christians and we believed that we were to go into ministry, but how could this be now?

      I knew that we needed prayer to help us understand and deal with the emotional fall out of my husband’s father selling the cemetery plots. This had been an emotional blow from which my husband was reeling. He didn’t understand why his father would deny him this request and he also knew that his father was not in a position to purchase another plot. He also wanted to spare me from the ordeal of purchasing this symbol of death. He was devastated to say the least.

      In a short amount of time, my friends called and said that there was a group coming to the house in a couple of days; would be available on this particular date. I told them that we were born ready and the sooner the better. Above all else, we needed God. We were holding onto the 23 rd Psalm,

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

Journey Into The Shadows Part 3

In my mind I was screaming that we had to find another way to fight this cancer.But, how?  I didn’t want to accept that this journey had so little time. In spite of the cancer, my husband was strong in body and, as always, stubborn of will. As John Paul Jones said, “We have yet to begun to fight!”

There had to be another way….there just had to…

 In the doctor’s office, the oncologist stated that there was a different therapy that he could give my husband. It was called “Fol-Fury”. It was the same regimen, but the main chemo drug was different.  My husband was adamant, he was not going to take anymore chemo. He said that he did not want to spend his remaining days vomiting and lying in bed and that was his final word on the subject. It was clear, that without a supernatural intervention, we would be having a funeral in the spring. The oncologist saw my husband’s resolve and said that he wanted to see my husband monthly, with or without chemo, so we made an appointment for October and left the office.  

We stopped at his parent’s house. They lived in the same town as the oncologist. While my husband was resting in the spare bedroom, there was a phone call. I overheard his father say that he would meet this person to show them the grave sites that he was selling. I was surprised to hear this because I knew that my father in law had promised my husband cemetary plots a couple of weeks ago.

About 2 months ago, prior to our knowledge of my husband’s cancer, my father in law offered to give us two cemetery plots. He had purchased these plots for himself, my mother in law, and their adopted, mentally handicapped son several years ago. My in laws decided that they were not happy with the policies regarding ornamentation of this cemetery so they purchase additional cemetery plots at a different location. With that purchase, they had 3 extra plots.We initially declined the offer because we didn’t think that were in need of them and we weren’t sure that we wanted to be buried so far away from my family. After the diagnosis, my husband asked his father if the offer was still good regarding the grave plots. My husband offered to pay his father, but his father refused.  By taking care of the grave site, my husband was trying provide something that he knew would be difficult for me; I was grateful for his thoughtfulness. We were bombarded with so many things to contend with after learning of my husband’s stage 4/terminal cancer. 

Now, I was worried. What was meant by my father in laws conversation that he would show these strangers the cemetery plots? Were these the same plots that he told my husband he could have? After my father in law got off of the phone, I asked him these questions. He became very uncomfortable and he said that he was going to sell the grave plots that he gave my husband and if the time should come that my husband needed aplot, then my father in law said that he would buy one….” He would buy one” ONE….that was unacceptable. My husband wanted us to be buried side by side and when you purchase one plot, there is no guarantee that another space is available at a later time.

I felt sick. At first, I was confused, next I was deeply hurt by what I perceived as thoughtlessness by my husband’s father. Then I was deeply disappointed that my father in law would go against his word.He was a minister of the gospel. After it sunk in, I was just plain angry. I was so angry that I didn’t know whether to spit or go blind!!!

I had to get out of there before I said things that I would be sorry for later. I told my father in law that these cemetery plots were his to sell if he needed to do so. I told my father in law that I would take care of it. It was clear that either his parents were extremely callous or they were in denial that their son was dying. I didn’t know which it was at that moment. I would have to find a way to take care of my husband with or without my father in laws help. As it looked, it was going to be without. No one thought how my husband’s heart was going to be hurt by what appeared to be the desire for money over the need of a dying man, their own son. 

What now? My husband wasn’t going to take chemo and maybe he had only 6 months to live. I had no place to bury him and no money to buy cemetery plots elsewhere. This was just what we needed, more stress and uncertainty….. talk about a low blow…. so far, the last 24 hours were real stinkers….we needed to go home. We had phone calls to made to the children….

The Journey Into the Shadows, Part 2

The most difficult thing was the fact that I knew that the allergic reaction meant that the sliver of hope regarding the chemo was gone.The Shadows were deepening……..

With Ibuprofen and the prayers of friends and family, we went into the night. His temp stayed in the 102-103 range and I knew that if it continued to remain that high, we would finish the night in the hospital.I crawled into bed next to him and held his head. I prayed that we would not have to go to the hospital and that this “drug fever” would pass. I fell asleep next to him and when I woke up, I noticed that several hours had passed.I took his temp and it was down by a whole degree to 101. Yeah!!! Praise God. I was so thankful that we weren’t going to the hospital this night. He was sleeping and I hated to wake him, but I knew that he needed to take the Ibuprofen. He was in pain and I gave him both the anti-inflammatory and his pain pill. He returned to sleep, but I couldn’t.

I got up and turned on the TV. It always amazed me that in all of the hundreds of channels, there was nothing on TV that could take my mind off of this.

For over a month,  my husband had undergone blood tests. CT scans, colonoscopy, biopsies. This enemy called Cancer had captured our whole life and we were being consumed. The doctors were puzzled as to the original site of this cancer.The colon and lungs were negative for cancer. (That was amazing in itself. He smoked for over 35 years and the lungs were disease free!) The biopsy of the tumors in the abdomen told us the type of cancer, which was mutinous adenocarcinoma. They knew that it was a metastatic cancer and not the original cancer. The primary cancer continued to be a mystery and the oncologist was sending all of the findings to his colleges and pathologists at IU Medical Center.

As I sat in front of the TV, I recalled my husband’s emergency laproscopacy in 1997. He had terrible pain that landed him in the ER.  As I watched my husband walk across the floor, I knew that he had a “hot appy”; appendicitis. The ER doctors couldn’t determine if my husband’s pain was from a kidney stone or from the appendix, so they needed to do emergency surgery. It was a total surprise when the surgeon came out of the surgery suite and announced his findings.

 

The surgeon stated that my husband’s appendix had calcified and attached itself to the back wall of the abdomen, He added that the appendix was gangrenous. He also said that when they removed the appendix, the calcification broke and the contents of the appendix had seeped into the abdomen. My husband was going to have a rough way to go because the contents of the appendix would set up peritonitis The surgeion said that as few as five years prior to this, my husband’s chances for survival from peritonitis would have been slim. It had been in the last five years that new antibiotics were developed that would help overcome the massive infection that would develop in his abdomen. He said that my husband would recover.  My husband did recover, but it was rough because he developed complications from all of the high-powered antibiotics. He had to be readmitted two weeks after coming home from the surgery. The appendectomy experience was why my husband hated the thought of going into the hospital last night. As I pondered this, I wondered if the primary site of the cancer could be the appendix. It was highly unusual for the appendix to be calcified and gangrenous and I wondered if the cancer was the cause of the appendix’s death.

At seven in the morning, the temp had returned to normal. It had taken 12 hours for the “drug fever”, allergic reaction, to subside. I called the surgeon’s office and asked that a copy of the pathology of my husband’s appendix be sent to the oncologist’s office. The surgeon’s nurse said that she would get a copy to us, however that it would be a few days. Because the appendectomy had been performed over 8 years ago, all of those records were stored off site from the surgeon’s office. It was bizarre to think that my husband could have had cancer all these years and not know it. How did he survive this long without any treatment?

I called the oncologist’s nurse and told her about the unusual appendectomy and that the report would be coming from the surgeon. I told her that I believed that this might be the original site of my husband’s cancer. Later in the day, I received a call from the oncologist and he said that he would advise the pathologists of the findings from the appendectomy for their consideration. He also scheduled us for an appointment later in the day.

The oncologist was going to recommend another type of chemotherapy; I already knew that my husband was not going to take any more of these lethal drugs. I wondered what we were going to do. I had no clue as to the next step in this Valley of the Shadow of Death. According to the doctor, without chemotherapy, there was no hope for survival more than a few months. In my mind, my husband’s refusal of chemotherapy was accepting this death sentence How was I going to accept that this man was leaving me?

 

In my mind I was screaming that we had to find another way to fight this cancer.But, how?  I didn’t want to accept that this journey had so little time. In spite of the cancer, my husband was strong in body and, as always, stubborn of will. As John Paul Jones said, “We have yet to begun to fight!”

There had to be another way….there just had to…