At Mark's request I started a new thread off of Sweetie's old Despair thread, after I sort of "Hijacked" the thread and we got off on a new tangent.

The action thus far:

Post by me (JetAgeHobo)

Sweety, Sabrina, yep, I think maybe we tend to grieve for what we lost. Even though we may have survived the cancer and the battle, things never will be the same. Yep, I pretty much look ok now, some say even better now than before the cancer, but I still miss not feeling like there's impending doom, and miss just plain feeling GOOD!

I wonder if I"ll ever get used to the fact I can't move my arms like I used to, that my tongue is gonna pretty much always feel strange. And I wonder if this tightness I feel around my neck is EVER going to go away.

But, I also learned to cherish the time I have, to live life and grab onto it, not be content to let it pass me by.

In the spiritual, cosmic scheme of things, I wonder if I didn't get this for a reason. My pastor says it's because I didn't pray hard enough and it's satan's work, (oooooohhhhkkkkaaaayyy) and I took it as a message to quit being a bum and DO SOMETHING!!! Especially since it seems at this point the cancer is in remission and I'm about as healthy as I'm going to get at this stage.

I go in next week for another follow up PET/CT, this one is the one year from end of treatment for second go around (HUH?) and I'm having the usual pre-scan jitters. So I guess I'm getting a little philosophical this afternoon. But the next day I sign papers incorporating my own business, ever the optimist.

I guess I feel sometimes I'm the little ball in a game of cosmic pinball, and one of the flippers is broken.

Sorry for sort of hijacking the thread, but just sort of "spilled out"

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SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, RAD/Chemo ended Nov 2002. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.

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Posts: 278 | From: Dongguan, China | Registered: Nov 2002 | IP: Logged

Then From Gary

Gary
Patient Advocate (300+ posts)
Member # 457

posted July 09, 2004 07:29 PM
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Hi Bob,
you should remind your pastor about Job -he prayed plenty and was a man of great integrity in his faith. He was still allowed to suffer. At least his story had a happy outcome. Pastors that say stuff like that drive me nuts (besides he sounds like one of Job's so called "friends". I, unfortunately, have met more than one pastor that was a lousy counselor. I really believe that some pastors shouldn't even talk to people one on one unless that have either professional training or a spiritual gift of counseling. Oh well - none of us are perfect.

I do believe, however, that disease is from Satan as well as the fear, helplessness and hopelessness. His favorite and oldest trick is to attack our minds and what better way to do that then with a life threatening illness. I heard a term today that was a wake up call "she was stricken with cancer". I never really thought of being "stricken" before.

I don't think that the reason is as important as what we do with it. We are given the opportunity as Christians to demonstrate our faith and the "fruits of the spirit" working in us under tremendous duress and many are watching (and listening).

My prayer group was encouraged by my outcome since so many they prayed for didn't survive. I am highly visible in my church being a bass player on the Wednesday worship team and Sunday programming team.

Another thing that churches often forget is that a major part of Jesus ministry on earth was healing the sick. That seems to be largely ignored in modern times.

This evening I have an earache and a sore throat (on the side opposite the cancer) so you can imagine where my "magic, magnifying mind" wants to go with it.

Thanks for sharing - it's sums up pretty well the space I'm in these days.

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Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm tumor, right tonsil, Stage III/IV, T3N0M0
Tx 1/28/03 through 3/19/03, Cisplatin Chemo x2, IMRT x33(72Gy)

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Posts: 801 | From: San Francisco CA | Registered: Nov 2002 | IP: Logged

Gary, after that minister's remark I wound up talking to the pastor at my mom's church who at the time was also undergoing cancer treatment, and he had been told the same thing by other pastors in the community. Lets just say it was a wrong move on their part.

Lets also just also say I no longer deal with the orgainization that came up with the first guy.

Bob

Hey guys,
I agree...what a horrible thing to say. I have read a really good book after Dan's diagnosis and during his treatment called, "Where is God when it hurts", by Phillip Yancy. What I love most about the book is that it talks about all the wrong things that are said to people suffering and how there doesn't have to be a reason that we ever know now...it's a fallen world and some bad things just happen. It's a very good read and helped me not have to try and figure out why, but like Gary said...how we react to it all. It's such a fearful, horrific thing to go thru cancer, but I have found that not asking God why or blaming any certain thing and just realizing that things happen has helped me deal with it a bit better. I just pray for everyone here and ask God to help me have strength, courage and wisdom to deal as I need to.
Take care and God bless,
Debbie

It's funny, I was raised as a Catholic and at one time wanted to be a Priest. I do not agree with a lot of the churches ideas so I pulled away from it. I never stopped believing in a higher being or ever stopped trying to be as much of a Christian as humanly possible. But I never once blamed anyone or being for my challenge against cancer except perhaps myself for some carefree youth moments. All I thought of was I WILL NOT let it BEAT me. If anyone ever said I was stricken with cancer because I did not pray enough......well I think I can honestly say I would have chewed them a new asshole real fast. Pardon my language.
David

LOL!! Me too, w/a swig of water!

Even though I did absolutely no high risk behaviors to get cancer to begin with I think God let me know I would. When I was 16 I had a vivid dream. I was standing in the waters of the bay being told I have cancer. In the water to the left my Mother looked at me like I was road kill mouthing emotionless words about how that was just too bad for you. All the while keeping as far away as possible like she might

Sort of on the same vein - I was talking with a woman the other day who was telling me how all this suffering is making me a better person (and that is why God is doing it to me!!!). I had to hang up the phone on her.
I am not a better person because of this. Actually there have been many times when I have been a much meaner person than I think I have ever been before.
Where do people get these ideas?
Leena

Along the same lines, I hope, but maybe slightly out, (my brain is frazzled).

I would not listen to what has been told above. Cancer can effect anyone at any time as we all know. Its not about being a good or bad person, although as you all know I keep on questioning 'why me?'
I am not getting any answers to that question because I am coming to realise that there are no answers.
It has nothing to do with Religion and Satan and not praying and i never believed that to begin with anyway. Its to do simply with my body and its make-up and chemistry.
This may sound mad but at least with Cancer I know its 'real.'

Sweety

When i was told that my spot on my tongue needed to be biopsied I knew then that it was cancer. Of course, in the back of my mind i was hoping that it wasn't, trying to keep my thoughts in the positive. But, thoughts came to my mind like, how will i react if it is and what will happen. Will I or won't I seek treatment. Then when the doctor said it was positive I didn't freak out. I seemed so calm about things for the longest time. Of course, I had times when I would break down and cry. But, most of the time I was calm and could even laugh about things like losing weight because I won't be able to eat and how its going to be really quite around our house. I think that God gave me that sense of calm. Don't get me wrong, I had and still have alot of question like why me. But, I have seen little things happen along the way that have showed me that God is near and I'm not alone in what I am going through. I don't believe that He wants us to suffer in any way and I don't believe that people are punished in any way for something they do or don't do by God.
Unfortunitly cancer is a part of life and death. I'm in my church choir and I had my surgery the week before the 4th of July so I couldn't participate in the Sunday program that we had been getting ready for. But, I was there on the third row watching. That was hard for me because singing is my life! Anyway, something really clicked all of the sudden during that program. You see the songs were all out of a book Called "Somebodys Praying Me Through". I thought about it and realized that I had people in eight different states praying for me during this awful ordeal. To me that was just a sign from God that he does have a hand in my life especially through this time of confussion and pain. All this has made me appreciate the little things like even the wind blowing of my face or the sunshine. I hope this hasn't affended anyone!!!

Awesome post Kelli, Thanks for sharing! Love, Carol

Hi Kelli,
my experience was very close to yours and very opposite in some ways. When I first noticed a problem in my throat I was convinced that it couldn't possibly be cancer because I hadn't smoked in over 30 years nor drank for over 9 years. I was convinced that it was a peritonsillar abcess (PTA). While I was surfing the web looking for information I ran across a personal site of an oral cancer survivor that graphically detailed his radical neck disection and entire chronology of the disease. It sent a chill down my spine (I later discovered that this was an ominous warning). Months later when I finally went to the ENT, and he informed me to "get my affairs in order", I flashed back on that site and immediately passed out in his office. I never considered the "why me" though? Since almost every one of my family members either had or died from cancer it was more like "why NOT me?".

I certainly don't believe that God punishes us on any level. We are quite capable of punishing ourselves. We have much more difficulty forgiving ourselves than God does.

I too am on a worship team at my church and had many praying for me for a very long time. My extended church family was a vital part of my healing and recovery, not only just spiritually but financially as well.

When I got the "official Dx", I already knew what to expect so I didn't dwell on it that much. I pretty much accepted that God had a perfect plan in all of this. This is not to say that I wasn't very proactive, seeking the best cures, doctors and institutions (I made myself very busy with all of the research -many decisions had to be made very quickly -another reason why I didn't really have the time to dwell on it). I truly believe that God wants us to do all that we can do first, then He does what He can do. Like others have mentioned, I prayed a lot when I was on the table. I also used it as an opportunity to be still also and listen for Gods voice in the middle of the chaos. I had much peace while I was on the table and I hope that Aztarheel reads this. I did have my fears about choking and such but it never happened. I figured out ways to mitigate those problems and constantly made little adjustments. They never had to interupt treatment. Many times I slept through the treatments. I was on the table probably close to 50 minutes with the prep time, positioning, etc. Actually in many ways being on the table was the most peaceful part of the whole deal. I listened to the same Gospel music CD every day and it became by battle cry and my comfort. I knew exactly where I was in treatment based on music music was playing. There were times that the music would really touch me deep and it would be a very emotional experience that day. I knew that God was my strength because I had NONE -especially towards the end of Tx.

Today I am back in heavy rotation on the music team. I am performing in a band again and life is better than ever. I am cancer free today.

Wow Gary,
Thanks for sharing. I love how worship can draw us into His peaceful presence. Its great that you are back singing. I got right back in there as soon as I could get my mouth open. I is still guite painful after singing for an hour or so but to me it is worth it all. I still have to sing until I can't sing any more.
Kelli

Kelli and Gary,

I happened to stumble on the site Gary speaks of also. It was July 22, 2003. I received confirmation of my diagnosis July 21 from the biopsy July 18. I had been to many doctors for about 7-8 months because of the swollen lymph nodes in my neck.

I was working 450 miles from home and every morning around 5:30 am I was up and at the health club working out. I had started working out a little in December 2002 immediately after finishing the Hep C treatment...brutal in itself.

I met many people at the health club and one lady started talking to me about the church she attends, the gospel band her husband was in and the concerts on the third Saturday night of every month they had. This lady gave me a copy of the CD the band had recorded and told me to enjoy it. It was a more bluegrass style of southern gospel and I listened to it every Monday and Thursday during the two hour drive to the airport.

I distinctly remember the morning of July 22 and telling her of my newly diagnosed cancer. One morning shortly therafter a man nervously approached me and told me he was praying fervantly for me every day. I hugged him, thanked him and started talking to him. He then told me he was the bass player in the band and it was his wife that had given me the CD. I told him which song was my favorite and he smiled telling me that was the song he had written for a dear friend that was no longer with us and that was him singing the song. I felt the chill down my spine and I knew all of this made perfect sense to me.

Needless to say, I listed to the CD on the way to and back from radiation and during chemo. I have to admit I listened to my favorite song over and over at times and each time I could see the face of Jesus smiling at me through this man's eyes.

God has blessed me with so many stories during this disease and through my life. He has such a way of using our faith to get us through the most difficult times and using our faith to help us enjoy the great times a little more.

Ed

Ed, thanks so much for sharing that story, awesome!! Love, Carol

I have tried but I just can't figure out what God wants. I mean whose side is he on...the Dallas Cowboys or the Washington Redskins?

Danny G.

Danny G,

He is most likely on the Green Bay Packers side!!!

This thread has kind of drifted to many topics so I thought why not add to it.

When I was told I had stage 4, poorly differentated margins last July/03 I knew I was in deep dodo.
It affected me more last July with the first dx than the news of a mets to my lungs as well as a reoccurance in the surgical bed this June.

I have met more decent, loving, supportful people
on this website that I met in 54 years. I cherish that. No one can ever take that away from me. At times I can spend several hours on this website, at times I need to back away. I don't want to let this diaease dominate my life but it's hard not to turn on the computer and offer someone else support and read the latest news. We need this as human beings. Does anyone else besides me need a good cry every now and than? I grieve for my old life. My new life sucks. Without all the support from OCF members I would be a basket case.

Thanks for letting me ramble on,

Love Ya All, Danny Boy

Oh Danny, you make me so very proud to know you. Your post makes me sad and happy at the same time. I feel like I've known you forever,maybe it's that all my life I knew at some level that I would "meet" someone of your character. Who knows, all I know is that I truly love you Danny.
Minnie

Hi Danny Boy
Of course we are with you on this and at times like this, this is the best place to come, to know that the fight is not your fight alone, you can fight the battle on your own, but to win the war we all need to fight together..
Sunshine... love and hugs
Helen

Danny,
This is some really good stuff here. Yea, I can relate to spending hours on this site. I'm pretty new to this site and I cannot get enough of it!
Candle

God Bless You Danny Boy, Love, Carol p.s. I have spent many, many hours on this site too!

Danny Boy,

You said it so perfectly. I sometimes have to stay away from OCF for a few days to "decompress", but I find myself being drawn back every time. Sometimes it's torture reading all the survivor stories because I can't help but think "why not Heather, too?" At the same time, I, too, hope I can be of some help to others. My feelings are so contradictory I don't know half the time if I'm coming or going.

And I certainly do need a good cry every now and then! Lately it seems to be more NOW than then. I cry not only for the loss of Heather, but for all the souls lost from this terrible disease. Hearing that Lynn had died was really hard. My heart aches for her husband and 2 young children. I can't help but wonder if this suffering will ever stop.

Obviously, as a caregiver instead of a patient, my plight isn't the same as yours, but I still feel a kinship with you. I can't wait to meet you guys. See you in Vegas!

Rainbows & hugs,
Rosie

P.S. I've decided that as long as I am financially able, I am going to donate to OCF every time the forum loses a member to this disease. This one is for Lynn.

I appreciate your post, Danny. BTW, I previously sent you a private note, but it still shows as "unread by recipient." Did you read it? I was suggesting that you read this book: Racing to a Cure, by Neil Ruzik. In it, he talks about his own experience as well alot about the state of the art in cancer research.

I also asked Lynn to read this book a couple of weeks ago. She told me she was doing fine, that she would read the book...and now she's gone!

Friends, the state of the art in cancer research IS NOT surgery, chemo and radiation. These tried, though not always true methods have been the only thing offered to us for the last 30 years. Which is why the statistics haven't improved much in 30 years. And the unfortunate chances are that a lot of us are going to see a recurrence or a second primary. In the mean time, I beg you: Don't leave it in God's hands. Be proactive. Keep researching. Don't be lulled into the paradigm of thinking the "big three" treatment options are the only thing out there. Esspecially when they have failed. Look into things like monoclonal antibodies or anti-angiogensis agents like Celebrex. Then ask your doctors really hard questions about the state the art and what if. We, as patients and care-givers, need to be part of the driving force behind our care, not just passengers along for the ride. I don't want to read another post like Ed's about Lynn from last Friday.

I'm through ranting. Thanks for putting up with it...

-Brett

Danny,
It is really good to hear from you. I have always thought of you as an old guy, but since I am about to turn 57, perhaps I am older! Here's hoping that both of us are around for a long time.
Good point about those Green Bay Packers. For the last few years they have been a lot easier to love than either the Cowboys or Redskins, and of course, I have to hope that our young Texans can get it together this year.

Take care of yourself,
Danny G.

Brett,
Are you undergoing any of these "other" treatments that you mention in your post. If there are other things out there with benefit I want to know about them and I want to know people who are finding benefits from them. I'd love to hear about what you have learned.
Take Care,
Minnie

No, Minnie, I'm not under going any treatments. While I am part of a clinical trial, I was randomized into the control group. Which means no medication for me. The clinical trial of which I am a part has to do with chemo-prevention.

When I first found out I was sick and as I proceeded through treatment and recovery, I have always tried to learn as much as I can about this disease. I became esspecially studious after treatment ended and there was that awful wait between the end of treatment and the first follow up. I'm not a person of faith, so I guess the study gave me the feeling that I was still doing something about my disease, rather than waiting for the other shoe to drop.

(I'm happy to say, by the way, that I've passed my one year anniversary since dx and I'm still disease free)

Anyway, I have been studying this stuff for months and months now and I'm always coming across something new. I try not to waste time on quackery, looking for things based on science. Well, I came across the book I mentioned above at my library and read it. I was blown away by all the research mentioned therein that had nothing to do with the "big three" treatments. There are so many variations to collection of diseases known as cancer that I could never hope to become really knowledgeable about it, but I will never stop trying. Suffice to say there are some genetic based treatments that look very promising.

I believe knowledge is power. I believe a knowledgeable and informed patient has a much better prognosis. If I end up with a recurrent primary or a second primary, I want to be armed to the teeth. In the mean time, I hope to help everyone I can.

On a very personal note, I took the loss of Lynn pretty hard. She was my first "friend" on the forum. The first to reach out to me with a private note. We were both recent "graduates" of M. D. Anderson and had some of the same doctors. While I understand and respect her decision to deal with her recurrence her way..........damn it. Let's not mince words....I'm f$%^*&@ furious she's gone.

Find the book. Read it. Never give up.

Take care,

-Brett

They say God does not give people more trials than they can bear. Apparently He thinks AzTarHeel can bear a lot, since He's also given him the Arizona Cardinals. (I'm an ex-St. Louisan who had to put up with them for many years).

I guess since I've had to think about it a lot the last couple of years, I'm not so afread of death as I was. Be damn sorry if the time does come, hope I get some sort of warning so I can at least go out big, but not afraid anymore.

Bob

Brett, you have accomplished one of your goals as you have helped me. I will read the book and think of you while I'm doing it.

Bob, I feel the same way you do. Hoping death doesn't come to me for years but am not afraid of it. My fears center around how my death would affect my girls.

I think it is natural to think of death when you first hear the words cancer. That is when survivorship starts and the fight begins! All of us here are fighters and yet all of us have a time to go. Lynn cared enough for all of us to let us know she was stopping treatment a few months ago and just wanted to enjoy the time left for making more memories with her young daughters and her husband. God gave her the grace to do just that.

Although I hate this disease, I am thankfull that I can take each day left to leave a good memory behind. I have a hope for the future and a better life beyond the pain. That hope gets me through the daily trials. To see death as a new beginning and not an end is called faith. And I am praying for more of that!!! It pushes the despair aside.

All of you here on this board are my heros! You give me the strength to keep praying!!! - Kris