The Search

Of everything
There is so much more than a name
There is so much more than an age
There is so much more than what you see
There is so much more beyond me

Tuesday, November 8, 2011

Finding Strength Part I

Mom & Dad on a trip taken in about 1975

This has not been an easy piece to write – emotions come to the surface as if they happened yesterday…. A situation that would be bad enough under normal circumstances, but with some controversy in her choice of treatment among “the family” this saga became a little more complicated. Because of It’s length I will post it in two parts….

My Mom’s “cancer life” could be described as Broadway play, expertly produced and directed from the beginning…. Looking back I watch it unfold, time and time again… I say that only because as I was in the middle of it, I feel like everything happened as it was meant to be….

During the years of her treatments, I went with her many times to Colorado Springs… driving her down or going to pick her up and bring her home, or sometimes when we as a family could get away, just to visit. There are many stories of driving in all sorts of weather from downpouring rain to raging snow blizzard, wonderful moments of time to visit with other….or sitting in the waiting room while she took yet another dose of radiation. She reminded me over and over again to just look around at the others who were there and to count our blessings…..

A couple of things she said to me driving in the car are still as fresh in my memory as if she were sitting next to me right now….. There were special songs where she would reach over to turn up the radio, her thoughts on life and love, and her memories of childhood….As depressing as it could be, I loved our trips because we could spend time alone together…

Chemo was relatively new in those days for her type of cancer anyway, non-Hodgkin’s lymphoma. “Standard” treatment for lymphoma was radiation on the new tumors when they appeared… Chemo was kept as the “last reserve” type of treatment and was totally and completely feared by anyone who had to go thru it in those days…..The day came when she had received all the radiation she could have and Chemo was the next treatment of choice….

It wasn’t until 1976 when she started on Chemotherapy….. If I remember right she had several treatments of Methotrexate. It was given intravenously. I’m thinking 4 to 6 in total…. She did not have a “port”…. I don’t remember her being given the option.

Along with this they also prescribed Leucorvorin as an antidote to lessen the effects of the Methotrexate. Leucorvorin was given as a shot and I was instructed by a nurse how to give it.Returning home after her treatment for a certain number of days I had to go to her house and give the shot.

Earlier in that last year Mom was hospitalized to have yet another procedure of some kind…. The day before surgery I was “summoned” to her room…. She had called the motel and just said she needed to talk to me with no one else around, I went immediately. Mom was in a zone I couldn’t quite enter. She gave me a piece of paper and a pen and told me to take notes that she had some things she wanted taken care of….. I did as I as told, puzzled. She needed to talk about if she died… She gave me instructions as to who would do her services, who she wanted to sing, etc…. what she wanted done with certain items, etc. When she was finished she simply said “I know I can trust you to complete all of this and make sure it’s done” I gathered my notes and left. I left like I arrived, feeling puzzled more than anything. I kept the notes she had made me take tucked away in my purse…

Throughout the 4 years of radiation and now facing chemo, “the family” which consisted of her Cousins, brother and sisters, questioned her decision to stick with conventional medicine.One of her cousin’s in Oklahoma had a son who was dealing with the same disease, a young man in his 30’s. His family had decided, due to some acquaintances of theirs, to take a different route and look outside of conventional medicine and into an unproven drug, a holistic type of treatment. They traveled to Mexico several times a year for checkup’s and to purchase of “Laetrile” a drug that many in the 70’s bought into.

The history of Laetrile can be traced back to the mid 1800’s becoming better known by Laetrile’s grandfather in the early 1900’s you can read the entire history of the drug on this website:

Studied by Dr. Ernst T. Krebs Sr., and his son Ernst Jr. so called the father of laetrile, begin to market this as an anti cancer medicine around 1940….. Dr. Ernesto Contreras, MD of Tijuana Mexico, entered the picture in about 1960. The “Laetrile Movement” ran out of steam following a Supreme Court ruling.Anyone considering an alternative form of cancer treatment should read this drug’s history….

Mom stuck with her doctors in Colorado Springs, even as many in “the family” encouraged her to try the other route.

Later in that year, (1976) following one of her treatments, I went over that afernoon to check on her and she was in bed, …She was in a great deal of pain. I wasn’t sure what to do for her, I needed help as well as her. I called Dad who was at work, he suggested I call her local doctor. I did, he was out of town, his replacement was no help. Mom refused to be hospitalized there.Dad’s brother who lived in town and had a small plane offered to fly her she and I to Colorado Springs the following day….. Dad had to stay and take care of the business, it was their only livelihood and they needed the income….Someone needed to be with her…. I was designated Mom’s caretaker while he handled the store…..

She told to me then that her “cousin” had called and offered to send one of us to Mexico, pay for the plane flights provide a place to stay and pay for the drug. Mom said “What we’re doing now does not seem to be working and if it would make “the family” happy, I am not against giving it a try”… and that Dad agreed. Could you make the trip she asked?

I talked with Jim about it that night and we both agreed that I just needed to do whatever needed to be done in order to support her and Dad and help where I could….. Jim said he could handle the kids and things at home and help Dad as he could however long the trip took.

I was given instructions to call the cousin and do whatever he said. It was decided that as soon as we got her to Colorado Springs and got her settled, I would leave from that airport, meet the cousin’s son’s wife Jan, who would be on the plane from Oklahoma, and we would travel together to their “connections” in California who would keep us at their home and transport us to where I would meet with the infamous “Dr. Contreras” in Tijuana.

Mom had a rough night and my uncle came to the folks house the next morning to take us to our local airport…. Dad came home to help and we loaded her in the car, he set in the front seat, Mom was bedded down in the back seat and I crotched down on the back floorboard to be next to her….. I’ll never forget as we pulled away from the house she ask for help to raise up for what I now know was to take one last look. We got her loaded on the plane, Dad & brother nearly carrying her, and before I knew it we were in the air headed for the Colorado Springs airport…. My uncle had rented a car, he and I got her loaded in that…. Finally we got her to the hospital where they took over…

I had went thru this day completely “blanked out”…. Everything I did seemed automatic…. But my mind was numbed.

Mom was in desperate need of help….. the hospital personnel got pain relief started quickly and put in a call to her doctor.The uncle left Mom and I there, I was on the phone with Dad constantly calling with any news or he calling me to make sure we were doing ok. I just stayed by her side and slept in the hospital that night. None of us realized how bad she was, only she knew. The doctor came in the next morning and simply said it seemed that things had blown up on them and there was not a lot they could do but keep her comfortable.

I called my sis and ask if there was any way she could come and help….or take over the store so Dad could come…. I felt so alone. She and Dad agreed that he needed to be at the store and it would be better if my brother in law could drive Sis to the springs, help us get settled in a motel and put some organization to this whole ordeal. Everything had happened so quickly….. I ask myself what was happening.

Sis arrived we found an old motel not far from the hospitsl.….Dad drove down just a couple of days later. He left their car with us, and his brother flew him back home. Everything was finally falling into a routine. Sis and I would get up early in the mornings and set with her through the day at the hospital.When Dad came which was as often as he could, we would leave and take a break while he was there with her, Mom was not doing any better slipping in and out of consciousness. within a couple of days Dad suggested I call the “cousin”….

With one phone call the plans were made, “the family” was happy that we were accepting their offer. Sis took me to the airport then returned to stay with Mom. Dad and I visited with the doctor before I left…. We told him I was going to Mexico for other medications…. The doctor told us he understood that there were no other options left and if it was him he might do the same thing. I picked the ticket up at the airport where it was waiting on me, boarded the plane and was escorted to first class and seated beside my 2nd cousin’s wife Jan. I was glad to see a familiar face but I was scared to death…. She assured me at once that she had done this many times before, their connections were wonderful people who would take care of us, and we would be fine…I felt that all I could do is go along with the next direction….. I questioned many times where the strength would come from.....

Please continue to "older post" for part II

Finding Strength Part II

Soon we were landing at at the airport in San Diego. The family’s connections were there to pick us up. They were an American couple, a man and his wife, indeed very nice, and welcoming.

We drove many miles thru low sagebrush over rough hilly roads… I had no idea where I was at….or where I was going. To this day I could not tell you where I was. I was just a passenger traveling thru time, worrying about Mom, Dad, Jim and my kids.

Reaching their home I was shown my room, taken out to supper and was told that arrangements had been made to see Dr. Contreras at the clinic in Tijuana Mexico the next day…. I don’t believe I shut my eyes all night….

After we arrived in Tijuana at the clinic, I was led inside to a waiting room, and eventually into a large, beautiful office. Dr. Contreras soon came in, Jan was with me. Introductions were made and in very broken English he ask me questions about my Mother…. After further conversation he then said “You have waited too long, I can not help her”. He then picked up his telephone and spoke to someone else, hung up, wrote the name and telephone number of another doctor on a slip of paper…. He said this man has a new drug, it is a good drug, I think he can help you.

Jan took the paper and we went to another area of the clinic where she picked up another supply of Laetrile for her husband.

Back to the car, our connection’s called the 2nd doctor’s number and we were off on another journey, we were driving to the town of “Tecate”. I remember as we pulled into town there was a guard station with a man in it, he was holding a machine gun… we stopped, a few words were exchanged, directions were given and we went to another clinic, this one not so large or so nice.

I went into this doctor’s office by myself. I repeated the conversation I’d had with the first doctor. This doctor told me his drug could save her… The name of the drug was “Tekirena”. One week’s supply cost the same as the Latril, $500. I excused myself, went back out to the car, and explained the situation. The male connection came back into the office with me, a few words were exchanged in Mexican street language, and we left, headed back to our connection’s house…. Again we stopped at a little restaurant for a bite to eat. I remember the dirt floor, two ladies making tortilla’s by hand, and the best Mexican food I had ever eaten in my life.

Returning to their home, we rested and visited, then about 11:00 p.m. we drove to I know not where… It was a large parking lot full of cars behind a warehouse. We parked and set for a few minutes. Two rows over was a car that flashed his lights twice. Jan gave me a paper sack, I was told to get out and hand it to a man who would hand me a paper sack in return. What I had in my paper sack was the $500.

We met half way, the exchange was made, I went back to our car and slumped over in the back seat…. I was drained of everything….all energy, physically and emotionally. I couldn’t think, I couldn’t move, I could not acknowledge my own presence. Jan took the bag and looked in it and showed me about 10 small viles, plus a piece of paper with dosage instructions written on it. There were two more flashes of the head lights and the other car left. We returned to our connection’s home, and I slept fitfully out of total exhaustion. I was more tired that I’d ever been in my life.

The next morning very early, my orders were to put all of my luggage on the back floor where it was obvious with the “drugs” laying at the bottom of my purse with everything else piled on top of them. I was told to smile like a tourist and act natural… We had no problems crossing the border and the guards did not look twice. Waved on through, I was then taken to the airport…. I was told not to be concerned about the drugs, the airport would probably not even check my purse…and they didn’t. Jan was staying another day so I was dropped off and I was on my own….

Standing in line waiting to board, my heart was beating fast and loud enough I could hear it and wondered if others could. On the plane I was seated beside a little girl about 5 years old. She told me she was going to see her Daddy in Colorado…. As the plane took off she reached over and took hold of my hand. Little did she know that she was giving me as much comfort as she hoped to receive from me…. I kept assuring her “we” would be ok and to just hang on.

Returning to Colorado Springs, Dad was there to pick me up at the airport. He took me to the motel to reorganize. I told he and sis my story – Mom was still hanging in there but she was failing fast…. I visited her that evening for just a while - I was so tired, sleep was no problem.

Dad went back home the next day and I studied the instructions and begin to give Mom her new medicines. Other than the Leucorvorin, I had never given a shot in my life. I had went to the local drugstore that morning and bought some diabetes shot.

The Director of this production was giving me every move, every emotion, guiding me through each step…. Instructing when to be brave, when to let down, when to cry and when to smile for other’s sake….

.The shots were to be given twice a day… x number of cc’s each. We followed the doctors orders… Her door was closed, sis held back the covers, watched the door, and held Mom’s hand while I gave the injections. Finishing, I would go out of her room and just set and shake for about 30 minutes to calm myself down. Her kidney’s had stopped at this point and she was very close to death. 24 hours after the first injections her kidneys started again… Was this reason for more hope?

Again, Dad returned on the weekend, I had given Mom shots for about 3 or 4 days…. The doctor called a meeting with us… Dad, Sis & Myself. He told us, you can not continue with your medicines, that we were all losing ground as each was fighting the other…. He said “It is your choice but I think you should give up, she is not going to make it.” I told Dad I just could not go on and keep injecting her, it was too hard on me….. Dad and Sis agreed, it was time we stopped.

I remember there was a ledge by the window, a huge window wall looking out towards the majestic Pike’s Peak, just to the west of the hospital…. I set on the ledge and stared at the mountains and sobbed…. My heart was hanging bloody and torn outside my body… it would not ease it’s torture on me…. I was totally raw and wished I could go out the window I was setting beside….

Dad spent another day or two – my memory fails me at this time, but after he left Sis and I pretty much moved into the hospital with Mom spending night and day….

Approximately 3 weeks after I had taken her to the hospital, in the late evening of Thursday, September 2nd, 1976 she passed away…We called Dad the minute it was confirmed by the nurse. There are some moments in your life too private to share, but finally she was without pain and at peace.

Sis and I set with her body until the mortuary arrived, we returned to the motel late that night, we couldn’t sleep so we packed, made the three hour drive for home about 2:00 in the morning.

I dropped sis off at her house, went to Dad’s, we set for few moments and cried together then I drove to my house. It was about 6:00 a.m….. I took a shower, got the kids off to school and the day passed. There were phone calls to make, plans to be made, Dad to be looked after, a trip to take her back to Kansas and a long list of painful emotions to deal with… somehow we survived it all. My Dad’s brother got all the necessary permits and flew Mom’s body and Dad back…Old friends met them at the airport along with the mortuary. Sis & family and I and my family took the minister and drove back…. We stayed at Mom’s sister’s house…. Returning home after the services, life resumed, but I couldn’t…. there were the holidays to get through….. Where could I ever find the strength.....

The director yelled “cut” and the curtains came down.