So Much I Want to Do, So Little Energy

nateswife

Just wondering if anyone else relates... I start out the day optimistically with a mental list of 5 things that I want to get done today. By 1pm I've done 2 things from my list and I'm physically done in. On the couch, tired out and pissed off because I'm 36 but feel like I'm 80. 

Chemo always knocks me on my butt for 4 or 5 days, but I used to recover after that and have 10 good days before my next treatment. Ever since having the first TACE procedure, I've felt permanently worn out with very little energy. I keep hoping that I will bounce back and "recover" from the TACE procedures. But maybe it's just regular chemo that's making me feel this way. My onco did say that the more chemo I have, the less energy I will have. 

I've been having chemo for 7 months. Is this the way it's going to be from now on?

lizard44

Are you pacing yourself

when you tackle the  jobs from your list?  I  did  5 months of FOLFOX plus Avasin, and had to take  Neupogen shots  part of that time.  That was followed by 28 radiation treatments with a  5FU pump for 24/5, and  I've been on Irinotecan with Erbitux  since February, with a  break from chemo for a liver ablation in August. I've  had two more chemo treatments since the ablation. I've found that my energy level is nowhere  near  what I'd like I to be and it seems to have even less energy since the ablation.  What I  have found is that I can build my stamina up over time, not to pre-cancer/pre-treatment levels, but to a new normal  level that isn't too bad. l found whenever my energy was lagging,  that I could  work for maybe fifteen or twenty minutes just fine, then fatigue took over. But if I took a break,rested a little while, I could go back and  work another fifteen or twenty minutes. It took longer, sometimes much longer, to get things done, but they got done and I  felt a sense of accomplishment. Over time, I could increase the fifteen minutes  and just this morning was able to get  a couple of hours of weeding done in the garden with very few breaks. I think the secret is to push yourself just  a little, but not too hard, and not to get overly frustrated  or berate yourself  if  you just  have to quit some days and rest longer. I hope you find a way to deal with your  loss of energy in a way that works best for you.

Grace/lizard44

dancer2

Unless i am totally nauseated

Unless i am totally nauseated or have the pump on, i will do something..........dancing has been my life and saving grace through many bad periods and i am twenty years older than you.........would not know what to do if could not go to class.....the only time i was not able to dance like i always had ( turns, jetes, plies) was the fact that my son and i took care of hubby and his father after a extreme stroke and it was 24/7 all adl's for almost four years.....i was working, but after two years of leaving my son alone at night with him doing all the work i resigned and stayed home so he could go finish college....never left the house but to go garden while he slept all day.........another saving grace, gardening........i made myself do it and always felt better.... i had gone back to dance and found out plies and jetes were no longer there like they always had been....but c'est la vie......i was there and dancing and after a year got some strength back and was beginning to 'fly' once again, then found out about the cancer....so be it.......when i am not sick to my stomach i now make myself go.......pace myself, don't do a few things ( mostly because of the port), but I always come out feeling so great......and do the same with gardening..........sick or not, things need taking care of, so push yourself when u can..............yes, i know there are times  you simply can't, then for me, it's just a matter of giving into it and resting or whatever it is we have to do for the particular problem.........i am always tired, but i make myself do things because it helps me feel normal........i do not want to live like i am dying, but live like or as close to 'like' as i have always done...........I am under a new doc, and i do two chair sessions a month and go home with the port that pumps in the 5FU for 48 hours and go back the third day and have it disconnected...the next few days and i imagine it will soon be more like for or five i am nauseated.......i stick a piece of bread in my mouth and that helps, but don't want to get a big bum so need to eat raisins or something else..soda crackers with peanut butter, whatever......for me, i baby myself when it's bad, then say, get off  your rear and go do something and it almost always helps....................and believe me, easier said than done..........many many times i want to give in to the sheer hell of it all, but can't quite do  that and feel good..........can tell you, i will lay down in the afternoon at times for a bit, and i think that is a good thing here and there, but for me, it actually makes me more lazy...........go figure...........

nateswife

lizard44 said:

Are you pacing yourself

when you tackle the  jobs from your list?  I  did  5 months of FOLFOX plus Avasin, and had to take  Neupogen shots  part of that time.  That was followed by 28 radiation treatments with a  5FU pump for 24/5, and  I've been on Irinotecan with Erbitux  since February, with a  break from chemo for a liver ablation in August. I've  had two more chemo treatments since the ablation. I've found that my energy level is nowhere  near  what I'd like I to be and it seems to have even less energy since the ablation.  What I  have found is that I can build my stamina up over time, not to pre-cancer/pre-treatment levels, but to a new normal  level that isn't too bad. l found whenever my energy was lagging,  that I could  work for maybe fifteen or twenty minutes just fine, then fatigue took over. But if I took a break,rested a little while, I could go back and  work another fifteen or twenty minutes. It took longer, sometimes much longer, to get things done, but they got done and I  felt a sense of accomplishment. Over time, I could increase the fifteen minutes  and just this morning was able to get  a couple of hours of weeding done in the garden with very few breaks. I think the secret is to push yourself just  a little, but not too hard, and not to get overly frustrated  or berate yourself  if  you just  have to quit some days and rest longer. I hope you find a way to deal with your  loss of energy in a way that works best for you.

Grace/lizard44

Thanks for the suggestions,

Thanks for the suggestions, Grace. I like what you wrote about pushing a little and building stamina. Makes sense. 

I'm envious of your two hours weeding I have two flower beds and a veggie garden that are starting to look abandoned. Just planted some peony tubers, though. They're special varieties and the desire to see them bloom is one of the little things motivating me to keep going. 

nateswife

dancer2 said:

Unless i am totally nauseated

Unless i am totally nauseated or have the pump on, i will do something..........dancing has been my life and saving grace through many bad periods and i am twenty years older than you.........would not know what to do if could not go to class.....the only time i was not able to dance like i always had ( turns, jetes, plies) was the fact that my son and i took care of hubby and his father after a extreme stroke and it was 24/7 all adl's for almost four years.....i was working, but after two years of leaving my son alone at night with him doing all the work i resigned and stayed home so he could go finish college....never left the house but to go garden while he slept all day.........another saving grace, gardening........i made myself do it and always felt better.... i had gone back to dance and found out plies and jetes were no longer there like they always had been....but c'est la vie......i was there and dancing and after a year got some strength back and was beginning to 'fly' once again, then found out about the cancer....so be it.......when i am not sick to my stomach i now make myself go.......pace myself, don't do a few things ( mostly because of the port), but I always come out feeling so great......and do the same with gardening..........sick or not, things need taking care of, so push yourself when u can..............yes, i know there are times  you simply can't, then for me, it's just a matter of giving into it and resting or whatever it is we have to do for the particular problem.........i am always tired, but i make myself do things because it helps me feel normal........i do not want to live like i am dying, but live like or as close to 'like' as i have always done...........I am under a new doc, and i do two chair sessions a month and go home with the port that pumps in the 5FU for 48 hours and go back the third day and have it disconnected...the next few days and i imagine it will soon be more like for or five i am nauseated.......i stick a piece of bread in my mouth and that helps, but don't want to get a big bum so need to eat raisins or something else..soda crackers with peanut butter, whatever......for me, i baby myself when it's bad, then say, get off  your rear and go do something and it almost always helps....................and believe me, easier said than done..........many many times i want to give in to the sheer hell of it all, but can't quite do  that and feel good..........can tell you, i will lay down in the afternoon at times for a bit, and i think that is a good thing here and there, but for me, it actually makes me more lazy...........go figure...........

Awesome that you're still

Awesome that you're still dancing! Good for you. I wish you could post a video on here I'm not in great physical shape to begin with, that doesnt help. I'm going to take a Livestrong class at the local Y to help get in shape and meet other cancer survivors. 

This morning I didnt want to get out of bed. I'm struggling with depression, partly over cancer but more so over the loss of my twin babies who were born prematurely. It's tempting to just lay there and think about dying and seeing them again. But the thought hit me this morning that I have a choice every day to either dwell on death or live this day well. I chose living, and got out of bed

Thanks for your inspiring post. Keep dancing.