Round One And It SUCKS

IF you can, drink caffein if you have to drive yourself as the exhaustion from chemo can become overwhelming at times- better yet try to get soemone to drive you if possible.

No lymph involvement is good- a nice positive- with cancer, we'll take all the positives we can get-

[[but boy, I am really dealing with frustration and anger at the moment.]]

Very normal- but remember, this too shall pass- while the chemo sucks- before you know it, it will be over, you will have made it through even though it was terrible, and bit by bit you will begin to feel better- and be glad you stuck it out as long as you did- knowing you did everythign you possibly could to beat this monster- Just when we think we can't- we give it 'one more try' and find that we could-

Your exhaustion draggy feeling will gradually dissappear- but to be honest- even after a year for me, I still get a day or two here and htere durign am onth that I get overwhelmed with exhaustion- but by and large, I'm havign mostly better days now- it's just when i over do it that the next day or so i get exhausted and fall asleep during day for a coupel of hours- Just listen to your body- it needs the rest- and go with it as much as you can- We're tougher than we think- especially when we get so down fro mthe chemo- we still have reserves to draw on despite feeling liek we just want to stop-

You don t have to tell me what chemo is Good news when you will get done with chemo sessions you most likely will have ‘clean’ body. I mean free of mets. Sweet word remission. Hope it will last for the next 10 years and we will go from there. Butt.

Eight rounds of Folfox was  what I was told by Mayo PHoenix oncologist was their protocol, also my oncologist in Virginia said basically the same thing. You can also convince your doc to reduce your dosages, have been told it doesn't effect the outcome (So why hit us so hard in the first place??) My last 3 were reduced and and were slightly more tolerable. I am reading a very interesting book if you are interested in alternative theories and treatment of cancer, advocating for less toxicity and more complimentary therapies. It is called "How to Starve Cancer" by Jane McLLeland, Stage 4 survivor. Highly recommend. Do you also get IV Steroid with your infusion--I got 10 mg. of Decadron each treatment, you may not need to do the oral dose? I also remember being terrified of what chemo was doing to my resected colon --its done okay so far, as long as I don't eat raw cauliflower lol!! Love and strength!

Trubrit said:

Horrible. Just horrible

I am not going to tell you any different.  It is horrible and it is miserable and it is going to put a damper on your little mountain home. A damper on everything.  

Focus your eyes on the light at the end of the tunnel. Look around you, as you sit in your little home, and think of what it is going to be like when you are all done. When you are finished with chemo and surgery and side effects. What it is going to FEEL like to be you again, to LIVE and to ENJOY the beauty that is all around.

Don't force it now, while you need to keep somewhat active, because that does indded help, let it be something to look forward to, something to live for. That moment when you can say I am NED and take in that mountain air, and know it is the joy of your life that will keep you alive. 

Even though I have reached that precious five, I also believe that I have to continue to make it happen. Continue to DO in ordre to make it to ten. I have to live, it is not just going to happen.  You will get to that point, but flow with what is happening now, even if it does suck, but never lose sight of what it is going to be like when you are done with the treatment and can start 'living' and being you agian. 

HUGS

Tru

Thank you, Tru.   You always seem to find the right words to say. I know they’re not just “words“ but are deeply felt based on your experience. Please keep putting that hope & encouragement out here. 

 I do agree with you that we have to live… That it is not just going to happen.  The darkness comes when the chemo  takes me to my knees and getting off the couch is an effort.  That’s when I really question whether this is all worth it. 

Thank you you so much for reminding me that it might be. 

Elaine

mojogirl67 said:

Trying To Flow Tru

Tru as always, there you are. You run with that five years as hard and fast as you can.  Your words brought tears to my eyes and I know how much truth is behind them . I am trying so hard to hang on to those things. I'm not sure why this round knocked me down so much, more so emotionally than anything. All I wanted to do is cry but the chemo makes my eyes hurt when I do...another wonderful perk. I am trying to flow with it but I have felt so much anger and frustration with being "chained" to this miserable disease. I want to lash out at all it has taken from me but there is nothing or no one to lash out at. I can't side step it...can't run from it...It seems to keep tapping me on the shoulder saying "I'll never go away". My body is still in recovery mode from both resections so I am sure that plays a huge part in the way I am feeling. I have a daughter here in the mountains and I think I am going to stay with her tonight until I can't get my head wrapped back around all of this emotionally. I am really struggling with quitting the mop-up and taking out the port. Maybe those thoughts will change and I will finish it out. You are such a blessing and hope to this board and I am so grateful for the insight and encouragment you give. It has made a difference in my thoughts and I am sure in so many others. Huge hug your way...M

If you are considering discontinuing the chemo, you may want to get the oncologist to help you slice the statistics really thin.  Not just what the percentage chance of recurrence is with and without the chemp, but also the advantage chemo may or may not give you with a recurrence.  I have never researched this fully, but I think that for some, chemo only gives a two-month survival advantage.  If it were me, I would carefully consider if days, weeks or months of misery are worth the possible advantage.  I have no idea what I would decide, because I am not currently facing this issue.  Sorry that things are so tough for you right now.

Yup just had a feeling you would crash after disconnect because it is so common.  Glad that your daughter is there to help you but you are right you need to stay away from germs and grandkids are a magnet.  During treatment my doctor told me to stay away from schools, birthday parties (including grandchildren), and not to get in close contact with anyone with a cold or flu, also I'd wear a mask going into the doctor's office and they provided those upon check-in as hospitals are known for bacteria everywhere.  If one of the grandkids had a sniffle it was a no-go.  It's hard during this time but you need to do what you can.  Hope you can get your strength back soon.

Kim

mojogirl67 said:

Isolation

Thanks for weighing in Kim...The grandkids push me to keep rolling but four boys are nothing but a bundle of germs running around, lol. Being with them for a while is good but then I have to have my quiet space. I have a room upstairs that I use and can pretty well keep to myself in so that helps. I have never said "wash your hands" so much in my life, lol. You are on the money about the fatigue and disconnect. This has been the worst round of the chemo by far. My emotions took a huge hit and the overall "yuck" feeling was worse than ever. I know my liver recovery is still ongoing and that probably comes into play. I am still struggling so hard with continuing mopup chem. I don't think I am going to do anymore rounds and take a watch and see approach. I'm not 100% certain yet. I have an appointment with my oncologist on Tuesday for bloodwork and a chat so I think I will see what my numbers are showing and just have a heart to heart. Thank you so much for sharing and the encouragement. Hugs, M

I will be doing the whole airport waiting and flying thing on Tuesday, so please know that other than a quick glance at the time, now and again, my thoughts will be with you as you make your desicion. 

Actually, they are with you now, but with a few distractions, but Tuesday is yours. 

Tru

I will hold you hand throughout the journey. 

While I will not try to influence you, one way or the other, I will continue to give you hope.  

Your friend, Tru