RADIATION + CHEMO

longtermsurvivor said:

so exactly what do you want from this forum
it seems like you have already framed all the answers you want. Some of your facts are wrong, though. This fact alone should get you to slow down a bit in your conclusions. I am specifically referring to your assertion thatvyou are now "cancer free.". There is quite a difference between having a negative exam or scan at the stagevyou are currently at,and being cured. And I dont know where youbgot the misinformation about erbitux, but it is just that- misinformation. It is not my intent to suggest a specific course of action to you. Rather, it is to teach you a maxim. In medicine itvis said that the doctor who treats himself is a fool. I wonder what that makes the lay person who treats himself.

best regards

Tim6003 said:

Hi Soundguy...
I may be wrong here ...but you are asking a question that brings secluar and religious principles into the same room (I think, and remember, my post is posted as a very humble opinion..and one thing about posts, you can't convey the "tone" in which they are posted).

So (it appears, if wrong correct me) as you I believe in miracles and I consider myself a practicing Christian. I want to note the word practicing in that last sentence. By no means do I consider myself wiser, smarter or better than anyone...in fact people who know me know I work hard to serve others and in fact believe that is what a practicing Christian should do...always think the best of others, always pray for others, love others and especially love those who do not like or even despise you. I could do none of that or be none of what I just wrote if the good Lord had not touched me and saved me in a way that made me realize what a "scoundral" I was many years ago (not stories I want to share with my chidren, that's for sure).

I was dx base of tongue cancer HPV + stage III with one lymph node involved. My wife and I and the children were devasted. When my 13 year old daughter sat with me a day or so after our announcement to the children (ages 2 years to 13 years and I have five children)and asked me why Daddy" is this happening to us? It was the hardest question I ever had to answer. My daughter was already "mad at God" because last year my brother (her Uncle Dennis) died of a brain tumor (he was my only brother and my age now, 49 years old) and two months before her Uncle Dennis died my father, my daughters grandfather affectionately known as "Pa" was dx with acute Leukemia...and Pa died two months after my brother died. So when my wife and I had to tell my children that their Daddy had cancer not even 9 months after losing two very speical family members...it was hard for my children to not assume the worst.

Here is what I told my daughter .... "Honey, I love you more than anything on this earth and I have no desire to leave you, your brothers and your mother here wthout me.....but all these years I have been blessed by the good Lord and I have never wanted for anything ...now just because things are bad I am not going to "give up" on trusting Him. The Lord knows our need, what's going on in our lives and I know He cares for us" I proceeded to tell her "if the Lord choses to heal Daddy via the doctors or by his miraculous grace (I do believe in moodern day miracles) then of course that is wonderful...but if He choses to not intervene and it is His will and I die, then so be it"...."I know He loves you and your brothers and your mother more than I could ever love you (and that is a TALL order) and when all is done and finished I refuse to NOT trust Him".

At the begining my wife adn I asked the good Lord for wisdom and strength as well as healing as I began my treatments. My daughter got in there and took care of me for a solid week in the RV I was staying in during my treatments (which were 100 miles from home) She missed school quite a bit for me, my wife would trade out with my daughter. I prayed everynight for myself, my family and many people along the way that I met that were on the same road as me. My eyes were opened to what doctors do, how much they care and the effort, concern and even "stress" they are under caring for people like myself who have loved ones who all look to them for answers and hope. My onc one day even "slipped" up I thinka and said to me "I get nervous too sometimes Tim" ...I was shocked to hear him say that bc it showed such a "human" side to him and I actually grew quite fond of him realizing how much of a toll his occupation must take on him. The nurses, the other patients ..so much energy and work to keep alive and stay alive was expanded ...it was as if God was showing me an entire world out there that needed more prayer and attention.

When I was first dx with my cancer I waited a full week to tell my wife. I did not know how to tell her, was afraid to tell her and quite frankly I did not want to hurt the one who was so wonderful as to love a "scoundral" like me. In that same week before I told my wife my 8 year old son asked me before bed one night "Daddy, how old will I be when you die"? ...I thought to myself off all the questions my son could ask me, why this question, why NOW? I held myself together and told my son "I don't know West, Daddy could die in his sleep tonight, I could die in a car crash tomorrow or even a heart attack next week". I told him "none of us knows when we will die and none of us are gauranteed another day to live, but that no matter when I died I would go to heaven and there I would wait for him until he came up to heaven too" ...he looked at me and said "Daddy, I hope I am a million years old when you die" ...to which I could only reply "me too son". I had a good cry that night and I remember asking nothing of the Lord but to be sure and take care of my family no matter what happens to me. I asked him for nothinng else but that at that moment in time.

One time when after treatments I was very, very sick. Mommy was not home (she had not worked since our first child was born 13 years ago, but due to medical bills and need she had taken a very part time job) and I began to shake uncontrolably...I knew I was in trouble and became sooo sick I barely made it back to my bed. My daughter becamce so alarmed she called my wife (mom) and said you have to come home daddy is very sick and he looks bad. I was so weak I could not even talk back to my daughter to reassure her all was going to be okay...I was breathng heavy and just felt like I was going to pass out ...I remember my daughter standing by my bed and telling me "mommy is coming" ...she then crawled up on the bed with me and began to hold and rub my head ...she then let out this HUGE sigh ...you know how they say a picture is worth a thousand words? Well my daughters "sigh" was worth a thousand words!! That sigh she let out spoke volumes.....then she said out loud these words "Daddy I just need you to be okay, I just need you to be okay" ...she said them in a way that was almost "pleading" ...and I could not even answer her back ...but I do remember saying a prayer under my breath .."Lord, take care of my wife and children, whatever happens, please take care of them" ....

I know I have gone on and on...but I share all that to say this. I believe in miracles and you stated you KNOW God has healed you. But I am here to say I got my first PET / CT scan after going through all my treatments and I learned soooo much from going through my treatments. I learned just what these medical professionals go through, what others go through who have cancer. I learned so much about so many things I never knew nothing about. I learned so much more about myself even.

Since my dx when I see someone with cancer who makes a post on this forum or in my local community and they ask for prayer...you bet I add them to my nightly list (I don't share this to make highly of myself) ..I'm in the process of checking into how to create a 501(c) thrift store to support local Oral Cancers patients in our community who may need gas money or prescritpions...I have added countless people to our prayer team at church ...and I shared much of what I am sharing with you not two Sunday's ago to our congregation and do you know they took up an offerning that totaled over $1,000 dollars!!!!!! My heart has grown so much closer to the Lord....to people with cancer but especially those fighting Oral Cancer (it is such a mean disease and so hard on the individual) ....I am determined to move heaven and earth to help bring awareness to this diseasee and to set up local screenings and whatever it takes to make a difference....

So when I shared this with my church two Sunday's agao and my daugther was sittting in the front row of that church to support me I turned to her and said "honey, remember when you asked why us Daddy"? And I said to her then in there in front of the entire church..maybe now you know why. Maybe now we have an answer for you.

So soundguy....as I am sure you will ..pray and ask the good Lord what He wants you to get out of this..what he wants you to learn (if anything) and don't be too quick to stop all treatments unless you are sure it's what He wants. Only you and He can know for sure, but I will go on record as saying whether or not oral cancer ever takes my life or I die from some other reason...I will forever be thankful for my dx and all I went through and I will forever say prayers for my doctors and nurses who cared for me as if I were one of their own family members and I will forever be grateful that the Lord has given us wise doctors and caregivers out there who do what they do.

I am not a "great guy" or a "brave person" I am simply a man who was once a scondral who is now forgiven and I am just like anybody else....I don't want to die and leave my family...but I do want to make a difference in the lives of those who have to walk the road I just walked. And I would have never known anything about this "road" if I had not had to go down it.

I also appreciate every single person on this board / forum who shares their experiences and stories ..they have no idea how often they have helped me and even given me some calm at times when I do let my mind wander off ...I am as human as they come

Keep us posted.

Tim

CivilMatt said:

Erbitux taken
Hi soundguy51,

Now that I have consumed a “punch bowl” full of Erbitux you come along and scare me, but not as bad as the cancer did. I had all good blood tests (every week) and a heck of a rash, that looked itchy but wasn’t. My most unusual side effect is eye lashes that keep getting longer and bug me to no end when I drive. I wish you all the luck and wisdom available when choosing which path to follow. There are no great maps to follow just good ones.

None of this sounds good to any of us, it just is.

Best of luck, best of choices,

Matt