Our First Date…Part II

This was beginning to be a little too much excitement. What was up with all of this? All I wanted to do was enjoy being on a date with a guy that I really liked?  I was beginning to realize that there was more to the Preacher’s Son than I knew. At that time, I was determined to not listen to what was being said about him. I didn’t like gossip and I didn’t appreciate everyone wanting to be in “my business”.

I also was realizing that ”breaking up” with the old boyfriend wasn’t going to be as simple as I thought it would be…what did he yell at the Preacher’s Son?

What did he mean, “I will see you later????”

It took 25 plus years before I knew what transpired regarding those words. After we married, my husband told me that the old boyfriend drove to the parsonage the next day.

The fight ensued. I think that was the first fight that my old boyfriend ever had and I am sure that he will never forget it. How can a boy from Cornfield County know how to fight someone who fought on the streets of northern Chicago? Needless to say, the old boyfriend learned alot about getting into fights over a girl that day.

I was oblivious to all of this. I had no idea what was being said or done outside of my little world. I didn’t know that the Preacher’s Son was told that he wasn’t good enough for me.

After we left the gym, we drove to the next town. There was a new Pizza Hut in Columbus and I was so excited to go anywhere but the old haunts of the home town.

We talked about Chicago and all of the “getting to know you” kind of things. He told me about playing the bass violin and orchestra. We explored our likes and dislikes of  music, family and church.

While we were waiting for the pizza, a song was playing on the PA and the Preacher’s Son began to sing along with it. I had never had anyone to just begin singing and he sang this song for me, just me. I was “smitten”.

I was so impressed with his voice, his easy way with a song that was not the latest hit. He was amazing.

Much too soon, my curfew was fast approaching and we were going to have to go back to my house. I didn’t want it to end…but, I also knew that my mother would be manning that porch light and I didn’t want to have to jump out of the car and go running into the house.

We arrived a few minutes early and we sat in his car. I really didn’t want to go inside. I was so comfortable with him and he with me. As I sat beside him, his arms went around me and I was enfolded in a place of warm and safety. I didn’t understand how someone’s touch could make me feel like “home”, but it did.

The windows on that old Ford began to steam up. The passion that filled that cold car was beyond my imagination. But, the foggy windows was a signal to my mother to start the blinking of the porch light.

The porch light was flashing like a neon light on the Vegas strip and, the longer that I ignored it, the more I knew that I would be punished if I didn’t get inside.

Relunctly, he walked me to the door and we said, “Good Night”. It was over. Our first date was ending. For me,  it was just the beginning of  “something wonderful” …

In the Midst of the Shadows, There is Joy!!!

In the midst of the pain and heartache of cancer, there is Joy!!!

Just a quick update. I received a call from my cousin asking permission to provide a Wedding Dinner/Reception following the Wedding/Renewal ceremony!!! What a surprise and a blessing!!!

There are more cousins and they are providing the music, photography and decorating. This is totally unexpected and overwhelming. In the midst of the pain and heartache of cancer, there is this unexpected “gift” of joy. I am overwhelmed with their love and generosity.

They seems to instinctively know that this is more than a renewal of vows and celebration. They understand that it is a wonderful memory that they are wanting to share in for me and my husband. This is a beautiful expression of love for us and I don’t know what to do or what to say that can express my gratitude.

I don’t know what to say other than “the Lord works in mysterious ways” and I am truly humbled by all of this….

My Beloved is excited and he is beaming when he talks about this Wedding. I am ashamed to say that I did not realize how much this meant to him. If I had known, I would not have resisted so and we would have done this earlier. But, I have to trust that this is the right time and the right place.

I am just speechless. WE ARE HAVING A WEDDING!!! How Marvelous!!!

Even In The Shadows, Love Never Fails

Tears filled my Beloved’s eyes. When I asked what was on his mind, he couldn’t speak. We had been talking about our anniversary when the tears came.

For the longest time, he couldn’t get control enough to say anything, so I turned to the computer and read to him my posting, “In the Shadows, We Are One”. When I finished, he looked at me and said that everything that he was thinking was said in my writing.

It was then I looked at him and asked if he wanted to get married. He smiled through his tears and his face beamed as he shook his head, “Yes!”. Talk about role reversals!

Fifteen years ago, he and I “ran off” and got married in a little mountain town called Jellico, Tennessee. In the snow covered village,we stopped at the Christian church on the town square. Once inside, we asked the secretary if the pastor was in and that we wanted to get married. She replied that the pastor was out to lunch and that it was his policy to not conduct a marriage until the couple had completed a minimum of three counseling sessions. That wasn’t going to work because we were combining a business trip with getting married and we had to finish our business before we went home. The secretary said that there was a Justice of the Peace over at the bank and we could see if he had the time to marry us. Off we went.

It was one of those old banks with marble counters and thick iron bars in front of the tellers. I had to smile at the setting. So many thought that my Beloved was marrying me “for the money” (*smile* That was the gossip around my home town because of the family business in which I was part owner) and here we were going to be married in a bank. How ironic!

The Justice of the Peace was eating his lunch at his desk. When we asked to speak to him and told him of our desire, he escorted us back to the vault, had a secretary be our witness and in the next 15 minutes, we were man and wife. 

We left town after having a bite to eat at a small restaurant on the courthouse square, then we were off to complete our business trip. Before getting back home, he and I decided to keep everyone guessing and took bets on how long we could keep the marriage a secret…If I remember right, I won the bet.  It was less than 24 hours before he called his parents. I then called my son, sister and father.

As the years flew by and the anniversaries added their numbers, my husband would ask me if I wanted to re new our vows and have a wedding in a church. After reacquainting himself with his Lord, he expressed that he wanted to re new our vows and have them blessed in church with friends and family present. I knew that having a wedding would suit him, it was me who couldn’t get myself down the aisle. I suppose it was a form of stage fright or something, but I just didn’t think that I could stop shaking long enough to walk down the aisle. It wasn’t the thought of being in front of all those people or anything, it was getting down the aisle without passing out…

So, it looks like we are going to have a wedding. We have no money to spend on the trappings of a wedding. I have a very beautiful dress that I wore at my son’s wedding, so I am going to wear that….as for every other detail, it remains to be worked out. We decided that we couldn’t afford a reception, so we are hoping people will not rush out the door.

My husband made all of the arrangements with the local pastor. We are going to be married in my home church which is where he and I met. His father was the pastor there when I was 17. It was in the sanctuary where we saw each other for the first time….How fitting.

When we finally were finished exploring the idea of having a wedding, he looked at me and said, “Some people would plan their funeral, but not us. We are planning a wedding instead”

I think that will be a true statement. This gathering may be what will be done in place of a funeral. Here, in the lengthening shadows of life’s ending, we are declaring a never failing love that will be with us for all of our remaining days together and for all eternity….

For a brief moment, as I looked at him, he wasn’t ravaged by this disease. He was the drop dead gorgeous young man that I fell in love with and I was that tenderly innocent 17 year old young woman dreaming of a life with him….it is never too late for love. Fifteen years is just not enough….

Shadows of Auld Lang Syne

The ending of the year has always been a melancholy time for me. I remember when I was about 11 or 12 years old when I realized that there was another holiday that followed Christmas. When I asked my dad about it, he said that it was just another day and that the only celebration that was going to happen was that we were going to sleep and we would be waking up in the next year…for a 12 year old, that wasn’t an explanation. I felt cheated.

As I got older, I realized the reason why my dad was not celebrating New Year’s Eve was because of the alcohol that went with the “worldly” celebrations. His drinking days were behind him and he didn’t want to remember his whiskey with beer chasers years. Those were the years before I was born. It was definitely against my tea sipping Baptist mother who had prayed many long and hard years for my father to give up his “good ‘ol ways”. No matter, there was as celebration of something special and I still felt cheated.

When I married at 19, the British husband that I had did nothing on New Year’s Eve. He rarely had any reason to  celebrate, or maybe it was that he didn’t want to celebrate with me. In fact, in the eighteen years that was our marriage, we never went out anywhere for any thing. Oh, wait, there was a Mac Davis concert. Yeah!!! NOT. That was the total of my social life with him. 

When I divorced, New Years Eve was a holiday that I added to my calender. I didn’t necessarily add the alcohol (that doesn’t mean that I didn’t drink). The alcohol wasn’t the reason why I wanted to celebrate the holiday. It was more that I wanted to go out and be around people in the midst of seeing something old out and something new in.

Years before, I began writing my thoughts about what had transpired in the year that was leaving and I wrote about the things that I wanted to see in myself and in life in the next year. In the time after the diagnosis of cancer in my husband’s life (not the Brit. he is a forgotten memory), I began  hoping that I had another year to have my love with me and this year, wondered if I would still have him with me this time next year.

As I reflected over the years since our marriage, my beloved took me out and we enjoyed symphonies and concerts, fine dining, holding hands and celebrating every event with love as the final act of the day, or in this case, the year. I had hoped that we could enjoy this special time together this year, but enjoying each other physically is becoming next to impossible. That is the one thing that hurts my husband the most. Our inability to be close to each other physically is like not being able to breathe to this sensual man. We miss each other desperately. Maybe God will grant us this special expression of our love just one more time this New Year’s Eve…..but it was not to be….

One of my favorite memories of  New Years was when we had orchestra box seating at the symphony. It was a Beethoven concert with champagne at our table. I wore my black velvet strapless dress with a bejeweled bolero jacket. He wore his black sport jacket with dress slacks. We were a very handsome couple. That is the evening that he told me that I looked stunning and, for a change in my self confidence, I know I did. We, as a couple, turned a lot of heads that evening. There were many whispers as we passed by. People were wondering who we were. I overheard someone ask if we were celebrities or something. I just smiled to myself. What was a rare compliment. Few, in life, every have that kind of  experience.

The symphony was wonderful and I felt so blessed to finally have someone with which I could share my love of classical music. I finally had a musician who soared with me into the heavens of beautiful music.

My husband is very  handsome and that night, he was confident and  a gentleman. He knew how to treat a lady and I had the honor of being his lady.  As we left the symphony, we made our way to a comedy club that was down the street. The comedian was like those who have little talent in the art of humor so they use bad language and lewd jokes to make up for their lacking. It paled in comparison to the wonderful sounds of the symphony so we didn’t stay long. We walked the short distance to the hotel where we had reservations and we finished the evening with champagne and chocolate covered strawberries. It was a real life fairy tale  for me. I felt like Cinderella finally being able to enjoy a princess moment. My beloved husband knew about the past neglect and lack of love in my life.  It was his desire to replace those bad memories of those years when I felt that I was nothing special with this dream of an evening. He wanted to overcome all the years when we were with others who didn’t love us. Our love seems to overcome those empty and lost years, especially that magical night. It was a valiant atempt, yet the lost time can not be recovered….on to the present.

Last night, we sipped hot chocolate, watched an oldie but goodie movie that we had never seen, listened to music, then as it become close to midnight, we called a few friends and his brother to check on his Mom and Dad. Before we knew it, it was Midnight. As the ball was dropping in Times Square, we were in each others arms dancing to Auld Lang Syne. As we gazed into each others eyes, we rejoiced in the fact that we made it one more year and we also quietly realized that this year brings  no guarentee for another New Year’s Eve. It was a precious moment that will be added to all of the wonderfully romantic moments that we have had in our short 17 years together….we wrote another page for our memory book.

He whispered, “You are the love of my life.” That is the first time he has ever said those words to me. In light of our past, these words are the  sweetest words that  my ears have heard. A few tears rolled down our checks as we kissed in the soft candle light….

The moment pasted when we heard somthing, a loud noise, outside the window and we first thought that one of the trees that are so close to the house had fallen in the gusty wind. Instead, it must have been one of our country neighbors setting off something that sounded like a canon. Some folks are just not right in their head!!! 

Our bedroom is on the west side of the house and it feels like the walls have holes that let  the cold seep through, so we decided to stay in the warmth of the living room to sleep.  We snuggled together on the couch until it was just too small for sleep. He settled in the recliner and somewhere around 4 am, we closed our eyes for our first sleep in the new year….2008.

Nothing loud or glitzy, no drunken spectacle, just soft candle light with soft music and the total enjoyment of two lovers so very glad to have each other for one more year. Together, we are hoping and looking forward to the next year that we have been granted. It was truly a Happy New Year for us.

These are the moments that seem to be the pages of our life together. The pages are full of trial and troubles, cares of children and love of grandchildren; there are pages of nothing more than pure contentment….we are blessed to have had the opportunity to write this memory book.

For those hours before midnight, the shadows of cancer lifted  in the candle light of a blustery night. We are still together….we are humbled with immense gratitude. Sometimes, we get caught up in the, “If only we could have had more time….”, but then we stop and appreciate each and every year of our lives….no matter what was contained in that year. We have the present and the past in the shadows of Auld Lang Syne….

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!!!!