Thoughts from Infusion with Jill & Carol, my oncology nurses…

I remember my first trip to Infusion and how horrified I was and how I was lied to by the oncologist I had at first… You know how people make promises to you most every day of your life and you also understand that half of them will never be kept. “Oh yea, I’ll take care of that” or “Oh I’ve got your back!” All of that, but when you are dealing with an issue like going for your FIRST Chemo treatment and your doctor promising that you will not have to go through it alone well, it’s a big thing! Well for me that day I was alone…

My post about caregivers gave you a picture of what it was like taking care of my mother and going through the motions with her and gaining some sort of an understanding of what she was going through but when it’s your butt on the line well, it’s another matter altogether. I must admit that after that first trip and the trip that followed at UAMS I was never comfortable with the treatments at all. In-fact, I was never comfortable in any visit I made to anyone at UAMS so when I finally made my decision to change I knew there would be great challenges along with many new thoughts where my cancer was concerned. I of course went to my primary care physician and told him just how I was feeling and that I had to do something now while I still had the time to make choices. He set me up a visit with the folks at Arkansas Oncology and man was I in for a surprise!

On my way to my first visit with my new oncologist I imagined it would be pretty much the same but I realized that I had no basis for comparison so I just tried to quiet my thoughts and drive. Well the first thing I saw was the building and I at once felt a sense of relief as this was a small office building with no large imposing towers, no emergency where you are a nothing and when I walked in I felt at home. It was a nice waiting room with a TV and some couches and chairs and the staff was so friendly. I was called in and an IV was placed in my port, some blood was drawn and I was sent back to the waiting room. This was odd as nobody used the port to draw blood before, only my arm and NEVER was an IV left in me for any reason… Well I was called in and the nurses got all of my information and I was seen right away by Dr. Thomas Sneed my new doctor. He was about the same as Dr. Makhoul but different in a way as well. We were both (or it seemed to me) comfortable around each other and the appointment went well. We decided to continue my current regimen and he only changed a couple of things stating that I was in good shape and that the chemo would continue to make a difference in my life. From there I went into the infusion room and was awe struck by the comfort of it. I felt totally different than I felt at UAMS and had no fear at all. Everyone looked good and they were happy and I could see no sorrow in any of the faces around me. I then met my first of the oncology nurses Carol and she removed the IV line from my port asking if I would be seeing them on my next visit. I told her yes and that I was amazed at the difference and asked how long treatment lasted in my case. She said it would be about 4 hours but they did some extra that UAMS did not do. Well I left there filled with hope and was so happy when I called Suzanne that we both rejoiced over the phone at my finding this oasis in the middle of my despair….

2 weeks later I returned for my first treatment and Suzanne accompanied me. We were still a bit tentative but after my story of the first visit we felt we were in good hands. Oh this turned out to be so true and we both spent the remainder of the afternoon in absolute peace while the vile poison was pumped into my system in an effort to enhance and lengthen my life. We enjoyed talking with everyone around us and again I was surprised by the attitude of everyone. We were all going through life changing treatment and we shared a happiness and hope that could be felt in the air. Suzanne was not only amazed at the environment but in the change in me as well. Gone was the fear and combativeness that overwhelmed me at UAMS and it was replaced with a calm that was just not natural for me in these situations. I had been so angry with everyone before and I did not know how to deal with it but all that was over now and we were on a new journey at last, a journey of healing….

Now I am a few months into this and am going to be taking my first treatment break to allow my body to heal 100% before we take off again. My CA19-9 count is way down and all is going well. I feel just great most of the time and I am able to work a little. The last time I was in the treatment room I took the opportunity to talk to my nurses about their thoughts on the kind of work that they do and its difficulties, difficulties which I know are many and how they deal with it all. As we talked I was a bit awed by the happiness they felt in their work and how dedicated they were to those of us lucky enough to have them in our lives. We talked about the many concerns people have during chemo treatments and how we all deal with the changes we go through. I could not help but to notice again that Jill and Carol went through these changes with us as if it were happening to them as well. Their tone of voice reflected the care in which they saw everything and how it was all handled and that I, me, Bill was a part of their lives as well.

The following are some of the subjects that concern me and things I wish my Legacy Foundation to address as we deal with others who are terminally ill. They are also the things which concern these ladies as they go about their difficult task of saving lives on a day to day basis…

When we are first diagnosed with cancer we try to find something, someone to blame for our affliction but after a time we, in some way or another come to terms with it. With me it was my family, my blood that I tried to pin the blame on. Oh my mother and sister both died of cancer so it had to be the blood that we shared that caused this!!! Well not necessarily, it is really the way in which I have lived my life and all the things I have done that caused it. It’s a great thing to look back and say I shulda, woulda, coulda but it does not work that way. We must play the hand we are dealt and do the best we can with it. I do realize that heredity does factor in with cancer and it did increase my chances but all in all if I would have taken better care of myself it might have turned out different so, blame? None exists. Jill and Carol both told me of patients who for the longest time blamed others for their affliction and some who never got over it but I myself know better and will not spend the remainder of my life blaming anything for my short comings…

After talking to the ladies for a bit another subject was brought up, one that went in line with the foundation I was to begin building just a few days later. We were all born with a purpose in life but some just don’t get it. They search and search but never really grasp what it is they were called to do. I know I spent many years just working, coming home, eating dinner, watching a little TV and going to bed just to do it all over again the next day. Day in and day out this went on for years with nothing really to show for it but the material possessions we all accumulate over time. Now don’t get me wrong here, it’s great to have a home and a car/truck and have all the stuff to go with it. Video games, sporting equipment, tons of movies to watch and just all kinds of junk but in the end when faced with a life changing experience you wonder just what to do with all the stuff. You begin to understand that old saying, “you can’t take it with you” and you become afraid. I had written before how I had felt that I had done nothing with my life that really mattered; now I did raise a daughter who has turned out just great but her mother and I failed in the end at marriage. I had had a few relationships since but nothing that really came to be much. I have had really good jobs in my life and my family was just great but again I had not really done anything. I guess it sometimes takes a “wake up call” to get you thinking about it but hell, getting zapped with a cancer diagnoses was just too much. Jill and Carol pointed this out to me that most of the people who come into infusion for the first time are somewhat lost because of their lack of purpose and some never do find it but for the most part many of us do and believe me, we are truly the blessed ones. I could not imagine just giving up and letting the disease take me like so many do. I won’t say that I don’t understand because I do when it comes down to the pain and discomfort we feel every day of our lives now but for me to call in a Dr. Kevorkian or some such person would be unconscionable. So for me it was prayer that led me to my purpose and Carol said that for many it is the same. We look to God for an answer and find out that we are not done yet, that we are only getting started. In my case it was the alleviation of my fears and the desire to help others like me that gave me purpose. For some it’s to rejoin with old friends and family making amends for the past and developing new relationships. Oh there are just so many things a person can do with their lives it can be overwhelming. But now you see what Jill and Carol meant when they said that some just lack purpose and give up. You know, you don’t have to be dying to find yours and you should just maybe start looking in the right place…

A good place to start is God! The ladies told me that in all that they have seen they find the most completeness in the people who have turned their lives over to God as without this, your soul will simply wander and you may very well be lost. Being spiritually lost is simply living day in and day out. Having no fuel in your soul tends to cause a person live without living and in doing this we rob ourselves of that completeness our soul searches for from the start of our lives. I remember when my daughter was born and that feeling of being a father was born inside me. What a fantastic feeling that was the night I drove home from the hospital; it was the first time in my life that understood “Having a Purpose!” Today my purpose is to live and tell others what it is like to have a sincere relationship with Jesus Christ and to let them know how He has helped me overcome my fears of loneliness and death. How he has helped me understand suffering and how to deal with it on a day to day basis. I admit it is sometimes hard especially when I am by myself and the pain sets in but you know what, all I have to do is pray and I know that I am not alone and that my suffering has been noticed by the author of life and that He will do something about it. Yes, what a wonderful feeling, what a wonderful life!!

I myself remember a time in my life where I lived with No Spirituality and that time in my life though fun, was indeed empty of any real importance. Today my life is very different as I think of this the better part of every day. Jill and Carol tell me that we, the dying think differently than others and though that may very well be true I kind of like it this way. I know that there are many times during each day that I look at those around me and think to myself, what are they doing today to bring themselves closer to God, to become a better person and be of help to those around them? I know too many people who only pay lip service to others who are in need but very few that act. In fact, just today I received a letter from an old friend who is serving time for something in his past but instead of looking at him in that light I saw him as only a friend who is reaching out, trying to gain comfort from those he trusted in his former life. What would you do today if you were confronted with the need to reach out to someone dying or imprisoned? I know what it says in Matthew 25:40, “Amen, I say to you, whatever you did for these least brothers of mine you have done for me.”

Ok, with that all said I must give credit to Carol and Jill for awakening many things in me that I guess were always there but needed to see some daylight. My wish today for all of you is to befriend some people like this and don’t wait until you are dying. Hell, you never know, it just might save your life!

Good-bye for now and God Bless you all!!!!

Bill K.

February 8, 2012

My grandson Jack’s 4th Birthday!!!!

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  • ive been reading for a long time, with no heart to add to everyones storys, but today i feel i have to add,maybe to help others with pc,or anyone else like me with hubby with terminal pc,last yr my hubby was diagnosed terminal pc,with secondrys to liver and stomache. prognosis was 2/3 mnths t the most, we were shattered, went private, worse senarou was less than a year, and so he started his palative chemolthat was in may 11,finished in dec 11,followed by upper gi scan,only to be told the liver cancer was never cancer,,,was a fluid filled syst, how the hell did that happen, and also the seedlings of the stomache had toally gone,yipppeeeeeeeeeeeee, we were over the moon, tlking to oncologist we asked well how come the tumour of the pancrus hasnt changed,, he looked and measured and said well i wouldnt lie to build up ur hopes but it lookes like there is a small change,, i could see if only minute, we left on top of the world,,chemo done and an appointment made for end of april 12,,john still works every day, even having chemo in the afternoons of one da y.he got up 6am the following and has never missed a days work since..i admire his fight and that is all it is,its keeping him going,i look at him and sometimes think god they have mixed my hubby up with someone else,if only this were true,now i have the nerve to tell u all something about my dear hubby i hope i have given others a little hope .. because from last may we were given notime at all,nearl a year on and we do everything as normal john is a ray of sunshine,a true legioned in his own right,hoping the scan in april will be good, we will see,i cant give up hope,i love him to much, and while he is fighting i will be as well,we are now in process of funding the pc in any we can, if only we knew the symptoms were so alike to diabetis,thats what they said he had with no symptoms at all apart from feeling tired,and treated for a whole year, we could have asked for more help, but not ever hearing of the pc, how were we to know, now we urge everyone to lobby your mp,. get the cause going,,

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