NEVER GIVE UP HOPE AND  NEVER SAY DIE

                                                                                                                                                                               The Human  Body is a Frail Thing but the Human Spirit is Relentless

                                                                                                                                                                                                                                                                                                 Scott Stricklin  August 2004

An Early Perspective- late in 2005

I am a Non Hodgkin’s lymphoma survivor. From the beginning, I have never allowed my lymphoma to define who I am or what I could do. I have always seen my lymphoma as an invader that didn't belong in my life. Cancer is an interloper that I am determined to drive from by body. In the beginning  I told only one friend about my illness. I kept quiet about it not because I was ashamed of being sick, but because I didn’t want people to have pity on me or feel sorry for me. I was sick but I believed in my inner strength to survive. That inner strength was there and to this day it continues to be enough for me. After I had reached remission there was my family’s joyous response to what I had survived. I had survived cancer, chemotherapy and a serious and major surgery. I had a complete remission from my cancer. My family thought that I should be thrilled… Right! As I listened to my family I heard a lot about how I should just be happy to still be alive. I was happy for that, but they there was more to it and I knew that they really didn’t "get it". From my point of view something was still missing, my life was just still "not quite right". There was worry and fear and the memories of what I had just lived through. Those feelings never let up and they always seemed to be somewhere in my mind. After a few months I was beginning to wonder if those thoughts and feelings would ever change. Why couldn't I just find a way to accept what had happened to the life that I had once known? Why couldn’t I move on?

This went on for several months until one morning when I woke up with a different view of my life. I don't know how it happened to me, but I finally realized that while I had had lymphoma, nothing else was really that much different then before I was diagnosed. While there had been some physical and emotional changes in the way that I looked at my life overall -on the grand scheme of things- nothing that really mattered to me had really changed at all. The people that I loved before my illness still loved me. I still had my job-more fun than work. I still had my friends, who had been there with me when I needed a friend. Other than the emotional and physical hell that I had experienced my life was pretty much the same as it ever was. “Normal” was still there for me, just had to look a bit harder to find it.
 

Before I was diagnosed with lymphoma I had casually thought about the fact that I was at some point going to die. What had changed was that I had survived lymphoma and nearly died in surgery, and I now really understood how final death was. Before my diagnosis dying was all just a hypothetical thing that was going to happen to me sometime and somewhere. After being diagnosed with cancer, having survived chemo and surgery I had a different understanding of the way that life is. I now really do understand  that at some point facing what really is the end of life was the only reality. That is a reality that is hard to accept but it must be accepted. With your acceptance or without your acceptance it is going to happen to us all. I have already died once. Dying is like entering a black hole that you can never come back from. Learning to deal with that reality of that black hole in a calm way seems to be my next real trick. 

A Later Perspective- November 2006

When I was doing chemotherapy I thought that when I heard the words "complete remission" that would be the end of the bad times and all would be right with the world. I have heard those words and I am here to tell you that those words don't necessarily make anything right. While they are good words to hear, I have found out that being a Cancer Survivor is a very complex thing. I have experienced the  reaction from my family and friends. They seem to think that dealing with remission is easy. They are of the mind that because I have survived I should just be happy to still be alive. I have had time to think about that reaction and all I can say is that they will never really understand what I  have been through. They will never understand that the life I once had will never be the same. All the love that they have for me won’t help them understand that. I have accepted that they mean well. I just smile and accept their love and I don’t expect anything more from them. I just Love them back and I have gone on to find my own understanding about what I have been through and who I now am within myself. As a survivor I am feeling many emotions. I feel anger because I feel like my body has been violated. I sometimes feel worried about  having a relapse. I sometimes feel  fear as I think about how my dying will hurt the ones that I love. Those feelings are all a part of being a cancer survivor. I am beginning to  understand that I  can never go back to the carefree life that I had before I was  diagnosed. I can't go back; and looking back at what used to be  is a waste of precious time  I must somehow start to move forward. The way my life is and way that my future is going to be is really  up to me. The quality of my life tomorrow is what I choose to make it today.

I have spent some time doing some talk therapy with a therapist that deals with cancer survivors. It has been very helpful for me to talk with him about the last two and a half years. Through our discussions about my experience with lymphoma I can now look at life in a whole new way. I now see my life like it is a road trip. It’s a mental road trip where I can go anywhere and do anything that I want to do. I can worry about cancer or I can not worry about cancer. I can be emotionally up or I can be emotionally down because all things are possible because all things are really my decision. When you’re on a road trip like that you should, you must take advantage of it and enjoy the greatness that that trip can become. Just try enjoying the scenery that is here right now and don’t worry about the bridge that crosses the river 2500 miles down the road. There is that possibility that the bridge 2500 miles that is down the road may be out. However, there is no point in worrying about whether that bridge across the river being out until I get to that bridge. So I have decided that from now on I will worry about getting across that bridge when I get to it. In the same way, during my road trip with life after non-Hodgkin’s lymphoma, I may find myself getting stressed out about scans. I may find myself worrying about having a relapse. But as of today those things haven’t happened to me so there is no sense in wasting time worrying about them. Those things are like that bridge that is way down the road. If I should I have a bad scan, or should if I have a relapse, then I will cross those bridges when I have to. By looking at my situation this way I am finding that I have a better acceptance and control of my situation. That better acceptance is helping me to live a better life every day.

I still have a family, some friends, a job and a pretty good life. Every day I do the most I can to focus on those things and to be involved the what is happening then. That is not to say that I still don't get anise and worried around scan time or before an Oncologist visit. I am learning to have faith  that whatever bad health crap may be coming it will take care of itself. I know that in the end, I have no control over when the end of my life will come. All I can do is do the most to enjoy what I have today.

In life, bad things happen to all of us. Sometime there isn’t any reason for it and why it happened to us doesn’t make sense. I could spend the rest of my life being angry about having had NHL and asking "why me”? I could do that but where would that really get me? I could spend every minute of every day worrying about bad scans and having a relapse but my worry won’t stop a relapse from happening. The cold hard truth is that we are all going to die from something. I believe that dealing with our own death is what is at the root of the emotional turmoil. Dealing with our own death is where the fear associated with having cancer comes from.

A New Perspective: A possibly controversial point of view- February 2008

 I will be a 4-year cancer survivor in June. I am feeling good, but the last few years have indeed been a long and winding road. There was a time when all I could do was worry, think and be consumed with fear about relapsing. That was before I took some time and finally figured out that my worrying about a relapse is and was a really big waste of time. Worrying won't stop a relapse or change a thing having to do with how my life is going to end. Worrying about what is going to happen to my health in the months ahead is useless. What's is going to happen will happen, and worrying will do nothing to lift me up. All that worry does is cheat me today out of enjoying my time in remission. Time spent in remission should be a  good time that is filled with happiness spent with my family and my friends.  I now see worry as a thief that steals the happy time that I can be having living my life today. I am learning to simply appreciate that I am healthy and doing well today. That is enough for me.

That appreciation of my life has brought  me to a new beginning. I am at a place where I am conscious of what I have been through and what may still be coming for me somewhere down the road. I am conscious of what is at stake here -my life-. What is different is that I am no longer obsessed and consumed with trying to or wanting to control what happens to that life. I have finally come to a place where I have learned keep what I think should be and what I want to happen out of the way. I am doing what the Tao tells me. I am letting it be and just living one hour at a time and just let my life roll on. I am grateful for today and with that gratitude there is the sense that even the smallest thing that I do is somehow a valuable thing. It took a lot of therapy, introspection and prayer to get to this point, but I think that the time that I spent doing all of that was worth it.

I am beginning to see that beyond the worry and the fear there is a place that is calm and happy. It is a place that I think can only be reached through letting go of what we think life should be like and accepting what today is. I have really accepted that I have an incurable disease-SLL-. I have accepted and I understand that the body is a frail thing but the Human Spirit is relentless. I have accepted the fact that in the end there is no hope for me or anybody else to survive forever. That acceptance has brought me a grounded sense that I think could only come to me by accepting my death. I believe that unless we can make peace with that idea  that someday we will die then we will be trapped in an endless cycle of fear and anxiety over dying. As people we somehow have come to believe  that we are  immortal.  I think that is how our mind tries to protect us from the truth and the finality of death. Letting go of  the fallacy  about our immortality is a big and a difficult step. Being diagnosed with non-Hodgkin’s lymphoma has caused me for the first time to really face the fact that life does really have an end to it. With my diagnosis, I was confronted with the reality that my life could actually come to an end. Over time I understood  that by accepting that I could/would die from cancer did not have to be a frightening thing. It could instead it became a freeing thing.  I now see the end of my life is like the last chapter in a great novel. The end of my life will be  where the story line comes to a great crescendo. Aside from being born, dying is the second greatest thing that I will ever do in this world.

Finally I want to be clear. What I am saying here does not mean that when you are diagnosed with cancer you should just give up. I am not saying that if you are having a relapse you shouldn’t fight for remission. I am not saying that if you are sick can’t hope and fight for better days. I am not saying give just up and accept death. If I were in relapse boat I would be fighting like hell with every ounce of strength that I had. What I am saying is I have made peace with my death and I now see dying as a sort of an adviser. I have accepted it and I have gone beyond the hypothetical that there is a final outcome that I will in the end die. By accepting my death I am free to live today without regret, fear or anxiety. By that there is an end to life I feel that there is really nothing in between me and what  is life.

Hope all of you are well ...just let it roll...down the road!

 A Five Years Survivors Point of View- June 2009

June is my anniversary as a 5-year survivor of non-Hodgkin’s lymphoma. From the beginning of this journey I have always seen my lymphoma as an invader that didn't belong in my life. It has always been something that I was determined to survive-or at least give the fight of my life. I will never say die. Early in my diagnosis I decided some things. I decided that I was not going to see myself as a victim. I decided that I was not living with cancer, cancer was living with me. I understood that while I had cancer, cancer did not have me. I had people in my life that needed me, so death was not an option. With all of that in mind I faced the enemy. I grew up in the 50’s when cancer was a word that instantly spelled fear, since having it was considered to be a death sentence. In June of 2004, when I was diagnosed I didn’t know if I would still be here in five–years. Back then there was a definite uncertainty about so many things. Now that five-years have passed I find that I am still here and so is the uncertainty about what lies ahead for me. The difference between five years ago and now is how I have come to see that uncertainty. Today I don’t fear this disease or anything that comes with it. On the way from then to now I figured out one very important thing. That important thing is that living in fear of what could be coming tomorrow will only rob me of the time that I have today on this Earth. Worrying about tomorrow doesn’t help with anything because worrying takes away the happiness that I can have in the here and now. Worrying destroys the happiness and takes up time that I can be spending with my family and friends. So I have chosen to live life today over the fear and worry about what will come tomorrow. I have chosen to live and enjoy what I have today. Our lives are really like a road trip. Like a road trip eventually it must end. It may not always be a smooth road trip but every minute of the trip has value. Because it has value, until it is over I have chosen to enjoy whatever the road trip brings my way today.

I have learned that keeping a proper perspective of my lymphoma is important. Every day I take a minute to remember that, “The human body is a frail thing but the Human Spirit is relentless.” That quotation is an an idea came to me very early on in this fight. That quotation has been the thing that I could rely on to lifted me up and keep me going for the last five-years. Indeed, the Human Spirit is relentless and when it is channeled in the right way there is nothing that it can’t do. Over the last five years, I have accepted that death is coming for me. I have come to believe that dying is not a good or a bad thing. It is just the end of what is a wonderful journey that I have taken. I know that  there are some people that will read this and will not really understand or be able to accept what I am saying or where I am coming from. That’s OK . On the surface it is a difficult and some may say a morbid way to look at things. For me, it has been the acceptance of death that helps me to keep everything in perspective. It is knowing that my life really will have an ending that helps me to live in the moment and really enjoy today. When I was sick I died once and I am no longer afraid of dying. It is not painful or bad. I know what is coming and I am not afraid..

So to those of you that have recently been diagnosed, and to those that are not doing so well….If you are feeling afraid of what lies ahead for you please consider this this. When you feel  uncertainty, when you feel afraid, please stop and take a deep breath. Then try remember there is no reason to worry because  you are still alive and you have today and that is really a gift. Worry about things tomorrow. Tomorrow is another day, a day that will take care of itself. Deal with what will happen tomorrow-tomorrow. Today…. Be as happy as you can with what you have in the here and now...don't expect anything more and you will be free.

Almost Six Years and Still Ticking! - April 2010

 It’s been almost six years since I was diagnosed with small cell lymphoma-SLL. During that time a lot of things have changed for me and with me. In honor of those six years of survivorship I wanted to write something to mark the great occasion. I am still here on the right side of the grass and that is a good thing for me. The problem that I am having is that while surviving lymphoma is a great occasion, there is really nothing for me to say anymore about living every day with non-Hodgkin’s lymphoma. I know that that statement may be hard for some to believe. And I’m sure that it is especially hard for some one that has been recently diagnosed to believe that. So for all of those that have been recently diagnosed with cancer let me tell you a few things. If it seems like I  have said all of this before that's because I have. After awhile I found that there is only so much to be said about cancer and living with it. Below is the refined version of what I think it's all about.

Welcome to the game. This game is not like Xbox this game is for real and when you lose you're dead. From this day on you must hang tough and become like the 300 Spartans. You are now fighting a battle where you must have an impeccable heart each and every day that you fight to stay alive. It’s time for you to fight as long and as hard as you can. Fighting half way won't get the job done. So fight with spirit and follow a path that has heart and always remember that you are not now and you will never a victim of your cancer. Remember that you may have been diagnosed with cancer but your life still has dignity. So every day, fight hard to keep on living and always believe in yourself. Always believe in your life. Have faith in God and never allow your cancer  to define who you are or what you can do with your life. While you might be sick, that's no reason to give up on living because your life still has great value! It has great value to you but more important it has great value to the people that love you. Do lots of research and read all that you can find out about your disease. The more you know about your cancer the less you will be afraid of it. At the same time that you are fighting hard to live you must start trying to learn to let go of all of those negative thoughts and feelings that cancer has brought into your life.

You might be feeling fear, anxiety and worry. There might be a sadness and depression about being diagnosed. You might be thinking about the grief and the sadness that  your loved one will feel if and when you leave this world. All of those things are normal things for you to be feelings. They are normal but they  don't have to be the only things that you feel because they are feelings that can be overcome. For you to do anything else less than overcome those  feelings is not productive or positive for you. Overcoming those feelings is going to take you some time as you to learn to cope with the changes in your life. Never the less from the first day you are diagnosed you must begin to do just that. You must you learn to let go of thinking about how bad things are. I know first hand that is easier said than done. In the beginning all you will want to think about is your cancer and how bad things are. In the beginning each and every day  there will be a thousand what if's and what could be's that will float through you mind. Learning to let go of them and the mental and emotional burden that  cancer has brought to you is the only way that you will ever be able to have some peace in your life. Be patient with yourself you have a lot on your plate. It will take time to let go of the fear and anxiety about what the future holds for you. Where to start? My suggestion is a simple one. Every day pick a time and try to go for a few minutes without thinking or worrying about anything connected to your cancer. Focus on and get absorbed in whatever it is that you are doing at that time and don’t think about anything else. Try to do that for a few days and I believe if you continue to do that then over time you will find that your mind will slowly become calm. If you do that often enough then at some point your life will become like a waking meditation. This is what letting go is really all about. Letting go is about learning to deal with a bad situation without being consumed by it. Letting go is about  focusing on the moment and only the moment that you are living in. It is as simple as just being here now. Give it a try you might be surprised by how powerful this technique really is.

A year ago I wrote .” Be as happy as you can with what you have in the here and now...don't expect anything more and you will be free.” I have spent this past year living every day with that thought in mind. It has been a wonderful time for me. So what can I say about my daily life with non-Hodgkin’s Lymphoma?  Yes, I still have incurable cancer and it may or may not be in remission. At this point my Oncologist can’t seem to decide. My disease is currently like a roller coaster with the doc on a different glide path every visit. I am fine with that and I seldom think about my cancer in a negative light. I have accepted my fate and that has set me free..

What I have written here may not be the way for everybody –In fact it may be for madmen only- but it has worked well for me. Whatever it takes please find a way that you can survive and coexist with your disease.. Be well and enjoy your life and do what you can do today. 

 Seven years …and there’s nothing left to say about non-Hodgkin's Lymphoma -June 2011

June  will mark 7 years as a non-Hodgkin’s lymphoma survivor. Over the past 7 years I have written down my thoughts about living with NHL. If you have read this far you have seen them and they give a pretty accurate synopsis of my journey to this point. Some of them may be controversial to some. Some of them may be difficult for some to accept. They are never the less about my journey. That journey is an on going thing. It has at times been a difficult road but I have come to accept it as my life.
 

And then it happened...THE DEMON HAS RETURNED!! Mid June 2011

My Small Lymphocytic Lymphoma-SLL- has just relapsed for the first time. After 7 years, I am about to once again begin the little dance in hell that is called chemotherapy. I have been there before but that doesn't make the second time like back to school night. The real difference is that I am a different man this time through. The first time through there was the fear of the unknown. This time through it is just another day. It is easier the second time because I now understand that I have no control over any of it. It is easier today because I have made peace with my death...that will come down the road. It is easier today because I understand the joy and the value that is contained in every moment of my life. It is also a part of my life with the ones that I love. I will fight live till the bitter end because I know that every minute that I am here it makes life better for the people that love me. Every minute I am here has value. And that is the bottom line in the whole cancer equation. Every minute that we are here has value. Enjoy what that minute can bring into your life. It is the only path that I have. I will walk that path with heart.

And then there was Remission!!!!! October 2011

So......again I fought the battle with the monster and again I was blessed to be the winner! It was a lot tougher doing chemo at 60 than it was at 54. After 5 rounds of Treanda and Rituxan my doc has managed to save me from my ultimate destination....Death. I have achieved a complete remission that should -fingers crossed- hold up for several years. During Chemo I have had more time to thinks about where I have been and where I am  going. Where I have been only matters because it got me to where I am today. I am with a great wife, my best friend, and a couple of good kids. Where I am going ...well who knows? There is really no way for anybody to know the answer to that question. All we can do is live everyday with heart and make the best decisions that we can make. You make a decision and if you can live with that decision then it is probably a good decision. The big question is when you are on you way out of this world, and you are looking into the face of Almighty God, will you be able to be proud of who you were and what you did....will you be proud? That is the question.

                                          The Circle

Life is a funny thing. You live and you grow and then it's time for you to go.

You're born so small you're held in everyone's arms.

You are everyone's fancy like a tiny little charm.

But then you get older and go your own way

And your parents get older day by day. You go on with life in usual way

Until one day you find that your parents have passed away.

So you pay your respects and then turn on a dime

And your life moves on with the march of time,

And you fail to see the rhyme that is passing you by.

Until one day you are old and someone is holding you in their arms again.

The Circle is full this is where we began.

Scott Stricklin 1975-2011

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