Stage IV Fighters are my Heroes

stage 4 fighters
I am a stage 3 survivor and stage 4 fighters are my heroes…Their fighting spirit combine soul-baring honesty and strength. Who I am is enhanced when I am in contact with these courageous souls….
Sue (Stage 4 Fighter)….Remember when AIDS was an immediate death sentence? And then one day, it wasn’t. Think of it, when you were diagnosed, was there a group of 8 year survivors? There is now, and the numbers are growing. You are embarking on a whole new approach Jan 30 right? What if that combination therapy knocks things down for years? It just might.
Pat (stage 4 Fighter)… Cancer has already stolen time from us, but that’s all I’ve decided to let it take from me. Its not going to stop me from living life, and being happy. Its a choice, and I choose a happy life even though life is not going to last forever.
MC, 9 Year Stage 4 CRC Fighter

To all my Stage 4 survivors lets say over 7 years do you wonder if the chemo will stop working and the usual line from the medical profession is we ran out of options go home and enjoy the rest of your life. Stage IV cancer I believe in the end takes no prisoners. Its almost like we are given the constant “get out of jail card” however, there are some of you with less time then 8 plus years that have already been told there is nothing else “we” can do. Why does this Country suck out every dollar they can to give chemotherapy that sooner or later will not work for us Stage Iv’s. How can a cell of cancer be so smart that it rejects all that you give it in time. Chemo was and never is the answer maybe for Stage 1-3 but not for 4 because we have cells where ever ready to pop out I respect highly those that have gone into Hospice but sometimes that is not the final chapter of our lives. I have heard of the unthinkable that the Hospice patient failed their 6 month program in a good way and lived for many years. I am back again for the umptenth time using now folfori and the Onc doesnt paint a pretty picture regarding I have taken the entire gammet of chemo’s. So what do you do. I am not going to lay around and die on someones word. Only God the supreme can make those decisions however, it does strike a note deep in my soul will I be one that chemo doesnt work for anymore.I believe being around happy positive people is contagiously great for us. However, if you are not a Stage IV patient/ survivor you can only surmize what we go through and what are chances of survival are compared to a 1-3.

I am going for 9 years surviving with this disease this August God willing. However, I still cant make plans more the 2-3 weeks out because of this rancid disease. There is no pretend in this arena of fight till you die.  Do we all scramble at a certain time when chemo doesnt work – yes we do. I for one dont think the human spirit, heart and mind want to wait around to pass but so many times we dont have choices because of lack of insurance or new forms of chemo havent come out yet. The reality to all my friends here that are fighting the good fight is that I am afraid to die, not because of the unknown but for the reason of leaving my lovely wife behind. Nobody promised us a rose garden as I recall, and if you dont have your health no amount of money will bring it back only God can perform miracles not modern medicine. Newbies please dont be fooled in a lull that all of these cases turn out primrose pretty because they dont. Just know that you have one life to live with or without cancer and you best be having constant mental parties and non-superficial people around you. Family and friends from the beginning to the end will be there to love you and comfort you. Cancer was never meant or will be my final destination but again there are times like some of you that I read all options have failed. So the question or discussion is does a Stage IV really have a chance to live a productive life for many years. If you show me a IV that has lived with the disease lets say 2 decades that is impressive and I strive for that. Any survival at any level 1-3 is tremendous but believe me we the IV’d are in our own group and its a damn group I wish I could break the chains that bound me. Hopefully this wasnt a rant, not meant to be. I havent been on for ever and a day as I want to know which I do now there is more to my life then cancer. We always hear we are not defined by “cancer” but there is a registry somewhere that defines that we have cancer. God Bless and any responses from IV’s would be appreciated you know who you are.

Shuey, 4 year Stage 4 fighter…
Hey MC,No one but other stage ivs can understand the “Time Sensitivity” we feel and It sux that all us Stage IVs have that door marked “The Abysys” directly behind us. Its the biggest struggle I deal with and the way I deal with it now is by chosing to ignore it. So I choose not to cope with it, maybe not the best way but its the best way for me now.  You are asking the one question I think many of us avoid What Now? And I hope I have the strength to make the best choice for my family and I at that time. Being lucky to be NED now it is easy to say I will fight to the end. BUT to what extent? I hope that I stay NED but facts are it will probably come back and when it does I will do whatever I can to make it go away again but what if it doesn’t? Do I want to be hooked up to a Chemo Bag at the end? I cant honestly answer that question now. Thank You and God Bless MC

thanks for your heart felt message. There is no way to gauge this and that is what sucks being a IV. Why was I NED for 3 yrs straight and popped out years ago, only the Master knows.

I know for a fact that somewhere on this great planet there are many awaiting the next miracle or just been  told that’s all we can do for you. Funny all those millions of dollars in so called “research and development” nothing seems to change. It reminds me of the old Jerry Lewis telethons – we are getting closer to understanding the gene that creates MD enough about understanding do something.

I guess I have to much time on my hands and I run different scenarios of my life and the word “terminal” which to me means termination eventually. Shue you might ask yourself why do I have a beef now over 8 plus years of living terminal. I cant answer that either its just like time stands still until the next blood prick, test, chemo. Congrats my brother on NED the longer you are on NED the better for all around. The abyss sucks and no mind altering legal medications can make one snap out of it. I wonder how my Buddhist friend Sue is doing.. Buddha had great knowledge and I always remembered what we have here is just  for here. We must shed our possessions to truly understand life. Well I can go so far but not crazy far with Buddha writings. Thank you again Shue, have a cigar and a highball  and call me in the morning lol. God Bless you my friend.

On 5FU, lukoverden(s), irotecan on a two week regiment then off one week. Zaltrap trying to get approved but in my minimal wisdom isn’t that a knock off of Avastin?

2/4 out patient surgery don’t want to be too explicit here because I don’t want to scare newbies. Hint. the surgery is where you “sit” daily that part of your body. Lets pray no cancer there I hate all of this and darn it 10 steps forward 20 Disclaimer to newbies….. These things don’t happen to everyone please don’t let the reality of others scare you. Its a fact of life that we fight with the whole body not just the mine. Never ever let your mind give up and wait for the body to follow to the land yonder (heaven). Peace Jeannie, thanks for your concerns and hopefully I will e back but watching from the side lines. My comments I don’t believe are valuable with new groups coming in as these are all my experiences and the last thing I want to do is scare someone new to the site. God Bless you Jeannie and your family. Peace.

Deb…stage 4 fighter…

MC, your posting hit home to me- the questions that lurk in our minds but afraid to speak of. Why do all this chemo if there is no hope of a cure? Maybe it is in the hope that during our chemo treating there will be a cure, perhaps to have more good days then bad days. I have only been treating a short time but I hate the unknown, will today be it, tomorrow, next week, month, year it is so difficult. I can’t say any of us know. I know people like you and the other long term survivors give me hope to carry on, go through the chemo bad days and cherish the good ones. Warm wishes and hugs to you and yours.

MC….

Deb, my message is not one to scare anyone on this site or anyone that I talk to. Its just the bottom line saying this kind, “this is not a rose garden”. Possibly more times then we want to realize the outcome is final and we Kiss God’s Face. I as a few on here have longevity. I cant talk and say how they feel but when we are together as a team it builds strength and positive reflexing in my mind. I saw something on you tube that inspired me. It was called Miracle Mike which is what my Onc before he left for another job called me. This gentlemen was terminal either with 4 cancers or 1 I cant remember for 4 times and says surrounding ones self with happy positive not said or people that don’t know what to say when you tell them you have cancer is “you look good” has been his survival manta.I take nothing away from any Stages of CRC however, bottom line 1-3 the last time I checked was not terminal, 4 is obv. I had chem today then had to see the Proctologist, not TMI on here for you. I have out patient surgery for an ulcer in a particular area where when you sit it hurts, get the drift lol. It is 2/4. The mind or least my mind says outwardly lets wait till it is removed and under the microscope, my mind mind says hmmmmmmmmmm all Pet Scans etc, show no new metabolic activity except the 3 lesions in my liver. What could this be. The words I want to hear its from Chemo so lets pray that is it. Stay on the path my friend, be vigilant, don’t sit too long on good news as cancer is a sleeping giant in my opinion. The cure my friend Deb is in our minds but mainly God. Chemo reduces, stops or makes the cancer cells disappear to appear another day, month or year. I am proud of my 8 plus years of surviving a terminal disease, so see Deb it is called terminal however, the quality of life you life is the most important. I babble too much so I apologize. Thank you for your message and your inner thoughts. We all have them and the last one in my opinion will answer them is God. Modern medicine will break a person of any and all moneys. I have the VA as my savior. I will never leave my wife of 32 years destine (broke) trying to save me for another week. That’s my reality, others don’t agree and that is fine. We don’t have rose shades on and everything smells like roses. I am doing my best to bring my “roses” = my life to a good place everyday that I am granted time on this earth. God Bless you Deb and your family. Enjoy life but always keep it real. :).

Randy (me), 27 year Stage 3 survivor…all of you Stage 4 fighters are my HEROES.

MC….

Thank you Randy coming from you means a lot. At your stage way back it seems in chemo infancy you triumphed heck 27-28 years survivor is off of the charts and the Dr.s are still scratching their head over your special longevity. We never asked for CRC and I never asked for Stage IV. I think my reason for being is first God, my wife and compliant with all tests, treatments, whatnot. You my friend at any stage are all our heros. You made the possible impossible possible and I know you are a very proud person that you have this longevity. God Bless you and your family, your son that was in the military, thank him for his service as well.

Birdnut, 7 year Stage 4 survivor….

Keep fighting! We never who will make it and who won’t but if we give up then we’ll never know if we could have been “the one” to break thru and save us all. a 6 yr battle only 1 yr NED but I refuse to give up until God comes for me.

MC…

Birdnut I hear you loud and clear. My fight is far from over. First, congrats on 6 years and 1 year NED.I have almost 8 plus in and out of NED but the last few years out of NED. The reality or at least what the Onc says is one day (only god knows) chemo wont be able to gobble up the cells anymore because of the immunity hence the word terminal. Its always been the real deal and for God’s reason I am still here. I just sit back at times and know that at least my clock is running maybe not fast or running down but its running to a specific direction. With cancer comes all the extras at least for me embolism on the lung, bloodclots in both ankles, and now ulcer where the sun don’t shine. That will be taken care of 2/4 and sent to pathology for review. All Pets indicate no new metabolic activity just a focus on the sun don’t shine part. Its the cards we have been dealt. I have friends on here that are 7,8,9 yr survivors just like me. We question not just trot to our appointments diligently and take chemo if that is on our menu with tests and go back to living what I call the “new life”. Soon as I was told I had cancer I had a profound change in my life, relationship with my wife (good) and people in life. So my friend I for one will never quit even if it gets to a hopeless position because the word Terminal doesn’t say it will happen today or tomorrow it will only be when God says its time to come home. Thanks for your input sir. have a great weekend with your family.

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7 thoughts on “Stage IV Fighters are my Heroes

  1. My dear dear MC
    So long I don’t know what is on your mind and now I hear it pouring forth from your soul. Of course all of us struggle with this who are stage 4. Your Buddhist friend is not immune to these struggles, I just approach them with a rededication every day to manage it the best I can until the sun goes down that day. I read a good comparison recently for us on how we need to live. In AA the alcoholic can’t deal with making a promise “I will never drink again” so they concentrate on just today.

    They can handle just one day, but to imagine a llfe time is overwhelming. So it is with our suffering. If we can truly live a mindful life, we know in our hearts that all we feel, think, suffer will pass. Even a moment of self pity will pass. (and no one should judge themselves for a little self pity!!)

    That is the impermanence that we all know is true and yet we still keep trying to fix everything and make it “right” As human beings, we will never make it “right”. It is odd that we constantly delude ourselves and think that we will someday. Accepting that we won’t takes a huge burden off our backs.

    Someday, she will be without you, or, possibly, you will be without her. We don’t get to time these things, the way we want. Our crazy minds and imaginations paint these pictures of what the future will be and fill up our present with thoughts of things that most likely will never happen. I try to remember that when I go there. WE JUST DON’T KNOW. and to be honest, I think the Drs know less that we do. yet they make their predictions. Pema Chondron calls it “groundlessnes” (by the way have you read her “When things fall apart?) People don’t like to live in the land of “we just don’t know”, but I beg you to try and live there and make peace with that truth. I actually get kind of amused now when I hear my friends making grandiose “plans” for their retirement years. They do seem superficial, but really, they live in a deluded world. There is a wisdom you possess that gives your life a much richer meaning. We can cherish that part.

    ok, so you know I don’t preach and try to convert people as a meditator. But the truth is, all of this can be explored intellectually, but it won’t seep into your soul without the meditation practice. The practice literally rewires you brain to see things as they are, and as that slowly happens, we fear less. Under all of this is fear.
    As far as that group of survivors that live 20 years. There isn’t one-yet. We may just be it MC. We may just be that first group of survivors that actually does it.

    Remember when AIDS was an immediate death sentence? And then one day, it wasn’t. Think of it, when you were diagnosed, was there a group of 8 year survivors? There is now, and the numbers are growing. You are embarking on a whole new approach Jan 30 right? What if that combination therapy knocks things down for years? It just might. Ok, enough of my stuff. I suspect when you wrote your post you were feeling like shit, which if I had written this on a nother day, I might have said exactly the same. Lean on me, when you aren’t strong, and I’ll be your friend.

  2. I know your reply was intended for Mike. But as I sit here reading it, and crying, I felt that I needed to thank you for writing it. So thank you. It helps to read things like that and makes me feel like maybe I can handle what we have been dealt after all. I just need to remember to take one day at a time, not focus on the unknowns, and count my blessings.

  3. I think everyone who is a stage IV Cancer Patient can relate to all your concerns and I’m sure we all feel the same and share the same worries. Heck, I think there are so many different feelings and emotions that if we were to explain them all we would create volumes of shared writings. You mentioned time being a factor and a very important one at that. I address time in the fact that I don’t have any time to waste. I want to enjoy whats around me, when its around me, and surround myself with things I enjoy doing and people I love doing things with. To me that is one of my coping mechanisms. To find hobbies, and activities that gives my brain a rest from the stinkin thinkin it wants to do and often find myself doing. But I have to find a way to turn it off. The stinkin thinkin is not going to change anything other than bring me into a depression that I’m constantly fighting to be in. The stinkin thinkin is not going to make my cancer go away its just going to rob me of the joy I can experience today. So these activities and hobbies give me a break from my cancer. Another way to look at it, is I have good Dr’s, good surgeons, who I trust. Don’t get me wrong I still do my due diligence when it comes to new treatments and plans they have in store for me and I have the final say as to whether to proceed or “Hey I don’t like that idea”. I trust them and leave half of the burden in their hands all the while trying to keep a new plan ready in case things go to sh-t. I cant constantly be thinking of cancer every breathing moment, it would drive me nuts. So I think I have developed a way of living that I can sum up in a few words. I live as though there is nothing wrong and push forward every day. When I have to go and sit in the infusion chair, and wear the pump the next couple of days, well that’s a reminder and I am in the cancer world again, but once it comes off, I am me and am trying to live as normal of a life as I possible can. Even if I am tired or fatigued I try to get up shower get dressed, address my side effects, take my pills, and at least take a walk with the dog and get some fresh air. I have met other dog walkers at the park and we may strike up a conversation that again takes my mind off of cancer. You also mentioned not being able to make long term plans. For me I also try to get away and maybe Im not taking trips to Europe anymore, I still do take 3 and 4 day trips to the beach, or the mountains. That also gives me a feeling of being normal and doing things that disease free people are able to do. And again it does wonders for my wife. It gives her a break and I know when I feed good she feels good. Its a way of giving me a break from cancer. Another way to look at time is that we can be taken from this world at any time without having disease. Look at James Gandolfini, he was 52, had the world by the b-lls, and he had a heart attack. Life wasn’t fair to him as it isn’t fair to us. Look at the people standing waiting for a bus and a car goes off the road and runs them down. All young, without disease and it was their time. Again bad luck, no disease, but it was their time. They went before there time. I’ve been shot at during the performance of my duties, never got hit, it just wasn’t my time. Everyone has a time and only the lord knows when that time is. So as I said I try to live a normal life as if nothing is wrong and go on doing the normal things as best as I can. Some days are better than others. I think this helps my wife seeing me live this way as well because it gives her the sense that I’m not feeling sick and we can still enjoy life together without ever bringing up the word cancer in every sentence. I steer towards humor, for me its great therapy to laugh. I too fear leaving my wife behind, and that is what I fear in death. This cancer sentence we have received comes with a very powerful mind game attached to it. Mentally we all have to find a coping mechanism, we all have to find a way to deal with our thoughts, but that is a choice. Cancer has already stolen time from us, but that’s all I’ve decided to let it take from me. Its not going to stop me from living life, and being happy. Its a choice, and I choose a happy life even though life is not going to last forever. Not for me and not for the ones who are cancer free. We all have a time whether we are sick or not. God Bless you Mike, We are here for you and I’m only a phone call away. Find peace within your heart my friend.
    Warm Regards,
    Pat

  4. Pat, Your wonderful words reflect the way I live as well. I know when I am in the infusion process, at doctor appointments, or going through surgery, etc., what I am going through and what I need to do. The rest of the time, I choose to forget about all of that stuff and enjoy my life. After all, no one, regardless of their life’s circumstances, knows what is in store. What this disease has given me is a reminder that life is precious and I cherish every moment that I am here. Well said my friend, well said. God bless all of us! Amen.

  5. Paula,

    My heart goes out to you regarding the tremendous situation you and your husband have at hand. Its so easy for people to look from the outside in and give you and your husband advise. However, obv, its your decisions what to do.

    I think as human beings or humans living in our current vessels we want to be pain free, debt free, in good health and enjoy the world for what it is worth. We all get certain enjoyments from being in the living.

    There are probably more then a handful of folks on here that have been told the very thing you shared with me and the others. Faith inGod, advocacy and options is all we got. Maybe not in that combined series but we have to believe in my opinion of course that there is something mightier then us that brought this whole shbang of life together on this earth.

    I would fight hard, I know you are to getting your husband better pain management because he is tormented enough with this disease and the overwhelming stresses that come with them.

    A core of us 7-9 years hopefully me being one to lead the conga line for 9 this August have our own ways of dealing or not dealing with out disease. My problem is I want to know every detail and research until I exhaust what I am trying to find, and I ask questions regarding Stage IV that the answer never seems satisfactory and then I mope because I did get the information and I just hated it.

    I for one will not be put out to pasture because of a disease that invaded my body. You hear so many times cancer doesn’t define us, that is true, however, cancer is an on going war without mortal shells, or bombs and grenades going off. This is all happening in perfectly healthy bodies that were made in the image of God.

    There are other folks that want not to hear anything about what they have. Its the live and let live mind set my opinion of course. They don’t bury their heads but they just as you, your husband, me, my wife and others on this magnificent site want to live a “normal” life knowing that there is something very special about us in a very unpopular way if that makes sense.

    In the moments you are with your husband I know you are a comforting angel to him and I believe that will sooth the soul of any of us. Of course that’s not the cure but its an addition to his life that he is living with you for that very moment.

    We all hear attitude is a big percentage of living through devastating illnesses, that’s a big yes in my mind but we still have to realize that we as advocates for ourselves or family members must not except necessarily what the doctor says. Yes I know its not their opinion its their profession but they are in no position to shake my inner soul with the fear that life as we know it is on major “watch” for me or others. I am not a very religious individual. I believe is Jesus as our savior and I believe in miracles and that he guides these Dr’s and surgeons to do the very best they can to save the body that our soul resides in.

    I don’t live like tomorrow is the last day of my life in a manner of being carefree or oblivious to what the real deal is with me. I however, appreciate every nano second I am given so I can do what I really love to do and that is love my beautiful bride of 32 plus years and take care of our two little people pets. Keeping ones mind occupied which I have a heck of a time doing at times seems to be the secret or commonality with others that have gone further then medical science can understand. Paula, we can only live for this day and make it count in our lives the best we can. Again, these words I write are only my opinion and work or don’t work for me sometimes. I still suggest better pain management as I will be darned that a disease is trying to take my life and make me feel physical and mental pain at the same time.

    I have fears, doubts and troubling thoughts like so many that might or might not share on here but my bottom line to all of this is when my eyes open up the next morning I thank God and its a new slate for me. The constant thoughts of cancer I don’t have it would be maddening to me I just want the most favorable outcome of all this “normalness” that we live with.

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