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Silly question...

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

I am approaching my 5 year anniversary of being diagnosed (unfortunately not of being NED). I have had few if any real breaks from chemo, I've had 5 operations overall and probably 170 rounds of chemo. I feel depressed a lot more now than I did earlier. I do see a therapist and also take a anti depressant but I often feel like this will never end and the side effects are really getting to me. I am on a short break from CPT11 but I am still on Erbitux. I know it could be much worse. I know of someone who does not have any surgical options left. Last summer I had my 3rd operation in my right lung to get rid of some small nodules of cancer. Now that side can not be operated on due to too much scar tissue. I am afraid of stopping treatments but then again, I feel like I've about had it. I should count my blessings but I just get down a lot on my chemo week. I get treatment every other week BTW. As I said, this is a silly question but do others feel this way?
Thanks
-phil

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

Hi Phil,

First of all - is that an Epiphone Casino in the picture. I had one that was about a 1966 vintage but like a dummy sold it, but I digress. Yes everyone has down days for sure. I have not nearly gone through what you are going through but hang in there. I have a friend who has gone through chemo for years - Yes it does get to him once in a while but he does go on and lives life to the fullest. He travels when he can and participates in events with his friends and family with gusto. Do something nice for yourself - check out a funny movie, treat yourself to whatever. There are better days ahead.

Cheers, Lance

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

August will be my 5 year anniversary since dx but it hasn't been NED. I have had periods of NED, however, and have only had about 1/3 of the chemo treatments you have. It DOES get very tiring. You start to feel out of control, and I sense from your post that that is exactly where you are. You feel like you have no choice in this fight, you just have to keep continuing on the bi-weekly chemo treatments and feel like crap and wait until the NEXT time you find out about a new recurrence. As tough as it is, you have to remember that you DO have control. If where you are at and the treatments aren't contributing to your quality of life, you just have to know when to say when! My last rounds of chemo were back in 2008 and I was due to finish beginning of May. However, I had plans end of April/beginning of May so I told my doc I wanted a break. I wanted to enjoy a women's retreat and celebrate my daughter's 21st birthday. Of course my doc's response was no problem. No point of treatments to extend your life if you aren't able to LIVE your life. I never did go back and finish the last few treatments; the 6 months had only dropped my CEA by 2.5 points. So, we have continued with Avastin every 3 weeks and have watched my CEA continue to climb. I had a consult with Dr. Levine at Baptist to discuss the possibility of peritoneal implants and it looks like we're going to have to go after them with IPHC (heated chemotherapy bath of the abdominal area after removing all visible tumor). Of course, if he opens me up and finds nothing, then he closes me back up. That's not likely. So, sometime in May I will be going back in for surgery. He says it's going to be worse than the 2 surgeries I have undergone so far, but it can give me a tremendous chance for more years of survival. It's been a tough decision to make, but I am at peace with it. Of course, I also know that if I decide that I just can't do it, then I will be at peace with that as well! One thing I know for sure is that the scans aren't showing any measurable disease, but my CEA continues to rise. Chemo only dropped the count by 2.5 points, and that's just not enough to make that crap worth it to me! My family knows that I will continue to fight until I can't continue the fight anymore and they will have to be ok with that! I am a tough SOB, and I don't plan on letting the beast get the best of me. That goes for the treatment to battle the beast; I don't plan on letting IT get the better of me either! God gave me a rational, thinking brain and I am sure He expects me to use it. Of course, He already knows how this will turn out for all of us, it's just a matter of time until we find out that plan for ourselves! God be with you and I pray for strength for you.
mary

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MoonDragon's picture
MoonDragon
Posts: 194
Joined: Jun 2005

I don't have anything more to add than these wonderful souls have already said, so I'm just sending hugs! Keep hanging in there!

((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))

Jorie

kmygil
Posts: 881
Joined: Feb 2007

Hi Phil,

I am so sorry you are having such a hard time. I have not been there, but I can just imagine it. You know that knot in the rope that Buzzard talks about? Grab it and hold on. You are in my prayers.

HUGS,
Kirsten

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taraHK
Posts: 1961
Joined: Aug 2003

No such thing as a silly question, in my opinion. I think most of us -- especially those of us who have encountered recurrences and multiple treatments -- can relate. (I have had three relapses since my original diagnosis -- so 4 surgeries, 4 lots of chemo...I'm on Xeloda maintenance chemo now). For the moment, I am hanging in there. Do these same thoughts go through my mind? Absolutely. And, with sincere respect to the viewpoints and attitudes expressed by others on this board, I don't necessarily embrace the view that "I will fight this to end, and never give up". I think I do acknowledge that there may be a time when I say "enough" -- and I accept that medical intervention may have reached its limits for me. If and when that happens, I hope I handle it with the grace which some others have -- including some beloved 'angels' from this board.

I hope you don't misinterpret my message -- I have every optimism for your good health as well as my own. But I think you raise an important and difficult issue which doesn't get discussed much. Thank you for doing so.

And all best wishes to you!

Tara

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PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

Thanks all for your input. Lance, that is an new Epiphone Dot Deluxe Flametop. A buddy of mine has a Casino but it's the reissue. It would be nice to still have that old one.

I think Tara's response hits the closet to home for me. I am in a low period and while I have hope that I may one day be NED, I also feel that sooner or later it will get me but I do not dwell on that. I have taken small breaks from chemo too, once for a summer vacation at the shore and another time around the holidays. Maybe one other time too. They were never longer than 2 months, just time to almost feel normal again. The times I did take a break, stuff grew during the break so I feel it's not in my best interest to take a break anymore. I did just get rid of the CPT11 for a while and in a month or so have a scan and see it I am still stable while on Erbitux. At some point though the cure will become worse than the illness (for me I believe) and I hope I will handle it with grace and dignity.
-phil

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Phil you are breakin my heart here...we seem to have been fighting about the same amount of time...my first liver surgery left me with just a small fraction of liver but it has grown back and more mets grew too.
I don't know even though surgery is so hard, so much pain, so much coming back....it always feels almost easy to me becuase it is somehow understandable....they cut you open and apart and you set about healing. Chemo just sort of grinds on doesn't it? I am just starting my third session in the four years but I think not nearly nearly as much as you have endured.
An anti-depressant has helped me for sure but you are not alone in these doubts and fears.....no silly question...that's for sure. I too salute you and thank you for posting this question.
I looked at your beautiful pictures from kayaking....the sun coming up....good stuff.

Sorry you are in a low...
Hugs,
Mags

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

You summed it up very well, "Chemo just sort of grinds on doesn't it?".
Yes it does. I am on a anti-depressant and had it adjusted recently. It's helped a lot over the past 5 years. I have managed to work through all of this too, I'm relatively young (51) and my kids are young, the youngest being almost 9. I can't go anywhere now can I.
Glad you liked the pictures, I need to get out and do kayak again.
I'm sure this will pass...

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I am only on a every other week chemo regimen for 12 treatments so I only know what I feel in these treatments....I feel like there is no end but for me there will be.....I am sick every other week and know that I will have a good week the following one. So, I have adapted this to fall back on when I really get depressed with it all. I can only imagine what you endure and have endured to get where you are. I have talked with my wife in great detail about what ifs and when I's so we have made an agreement that only we know about. I feel if life for me gets so miserable that I have no good days then Im going to my Gods House.........cut and dry....I know it will be painless there ....I watched my father waste away to nothing and think about him all the time and I will not have my kids go through what I did.....My father hid what he could but was a survivor but in the end knew that the battle was over and him and my mom made a very hard decision. I have come to the same conclusion.....I do believe in God and I am not afraid of passing on to my next life...I do know that my father will be there and my family some day also. That is how I get through the daily turmoil of chemo by understanding and knowing that God has all control and if He wants me to be with Him He will call on me and until then I will get through these treatments as best as I can. If one day I find myself in a position like yours I will have to make decisions based on my quality of life, for I have a short life here on earth and an eternal one after I pass......I pray that your journey becomes easier on you and that your blessings are bestowed on you soon....God Bless you Bud

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

I have been on weekly and the every other regimes over the past 5 years. It was easier at first and there was "novelty" for lack of a better work for the cancer. I was so gun-ho. I even kayaked for 81 consecutive days to prep for my first operation which involved a colon resection (a small piece luckily) 60% of my liver removed, my gallbladder removed, a few lymph nodes and they put in a hepatic pump to deal with my liver. It was a long operation (8 hrs) and I felt like I was hit by a truck. Shortly after that, 4 weeks or so it was back on the chemo wagon. So aside from the small breaks I got, and most of them were because they had to stop chemo for 4 weeks before an operation, I have not had an extended break. At some point I will say enough, I don't want to waste away. My Dad died of a stroke so I was very surprised to have cancer since there had been no history of it. I respect your beliefs but being as I was raised catholic and did 8 years of catholic schooling, it was sort of beaten out of me and my feeling toward organized religion are not the greatest. I know this is not the place for this type of discussion and I feel that whatever one wants to believe is great. I think there is so many good things that can come out of that. I know I have many people praying for me, but I don't pray for me. Maybe that is part of my problem. I do think there is something other than our time "here". What it is, I don't know.

I think the thing that's getting me lately is that I used to have the 1 good week and the 1 bad week, but now it's more like 10 bad days and 4 good-ish ones. I try to do thin I enjoy like playing guitar and I even am part of a group that gets together every other week to jam and I love photography. I guess I'm just in a slump.

I did the Gilda's Club for a while but the center went downhill and I wasn't getting anything out of it anymore. That's just my experience.

I'm sure I'll get through this, I'm glad I'm back here posting, I've gotten great feedback from EVERYONE.
Thank you all

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Phil,

I've been reading the posts you've put on the boards here in the last couple of days and at first was at a bit of a loss for words as to how to respond. Welcoming you back to the boards seemed so trite and how would that actually help you feel better? I was on 12 sessions of chemo, 10 of them with the oxy, and 6 weeks of radiation... which was a journey in itself but nothing that could compare with what you are, and have, gone through. So telling you not to worry, there's a light at the end of the chemo journey means absolutely nothing to you since it sounds like your life is going to be in conjunction with a chemo regime.

Depression... I can relate with that, big time. I have never (that I could remember) been depressed to that degree in my 54 years... and when it hit me, well there just aren't the words to describe what it's like. One can use the usual - scared, terrified, lack of energy, feeling there's no hope and the only end in sight is the big END - but those are just words, it still doesn't describe what you are actually feeling. It certainly is not something you can try to explain to someone who has not gone through a major cancer DX because as much as they want to understand, there is no way they can truly understand until they've walked in those same shoes. I did use an anti-depressant for a short time and that seemed to pull me out of the darkness. Now, I won't even go to that side where one has to use words like "terminal", "this is going to kill you" or statistics about survival rates. I know I have cancer, that's good enough... I don't need to hear all the negative stuff that goes with that... and I won't go to a doctor who thinks they have to talk to me in those terms.

I also respect everyone's beliefs here, but yours is the first explanation about organized religion that matches mine 100%. I also agree that this is not the forum to discuss religion or politics (wow... talk about starting flamewars ... both those topics can do that on their own ), but I have to admit it's comforting to know there are others who share my beliefs. Like you, I was brought up Catholic for the first 12 years or so of my life and it was never a good fit, even as a small child. I, too, believe that our time on earth is not the only thing... there is something after, but what it is, I have yet to find out. As for prayer, I have absolutely nothing against anyone praying for me because to pray, one has to think about the person and thought is energy that is being sent out... I'm a great believer in energy since everything consists of energy in one form or another.

So, after all of this, I'm not sure I have any words that will make you feel better, but if you are glad that you are back here posting, then that in itself is a good thing... and I think you know it goes without saying that we are all really glad that you have found your way back! Even if it is just a matter of spending some time here and escaping for a bit, then that's all good and can have it's own benefits!

I'm glad you are here :)

Huggggggs,

Cheryl

tiny one
Posts: 467
Joined: Jan 2009

I still have days where I feel depressed. I attend a really good cancer support group. We talk and laugh and cry together. We all encourage each other. We all say prayers too. I find that my support group has helped more than a psychiatrist. Saying prayers for you. God bless.

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

Oh ye of little faith... (that's me)
The cover story on Time magazine is about faith and healing. Coincidence???

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