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same problem, different day

LaCh
Posts: 509
Joined: Dec 2012

Well, first off, I feel almost guilty for compaining about what I'm about to complain about, in light of the much, much more serious issues that others are dealing with. In light of that, I'll simply mention it and won't dwell too long on it.   I'm tired.  I mean really, really tired.  I assume that it's acute radiation fatigue and not chronic radiation fatigue since I'm just three weeks post treatment but I mean, this is just crazy.  I can't push through it, sleep it off, rest it away or will it away.  They ought to find another name for this because it bears little resemblance to the kind of fatigue that everyone experiences, and if you say  the word "fatigue" people automatically think "Hey, I know what that is because I've experienced that too, so this must just be a really, really bad case of fatigue."  But it isn't. It's a different animal completely.  It's incapacitating fatigue.  Anyway, as promised, I'm not going to delve into it too much because I feel like if that's the worst thing that I have to deal with, I ought to count myself lucky. Which I do. (My pain isn't gone but is manageable. So, lucky, for sure, yes.) 

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I'm sorry you are experiencing this.  I hear your frustration and understand.  It's not fun when the human mind wants to bounce back but the body is not yet ready.  Hang in there!

LaCh
Posts: 509
Joined: Dec 2012

yep, thanks. I'd be willing to claw back. That doesn't seem possible either. Anyway...thanks.

Marynb
Posts: 1134
Joined: Aug 2012

I am glad your pain is subsiding! I think the severe fatigue immediatly post treatment is common, if that helps you at all. It does get much better. Walking in fresh air helps and also diet. I think most feel some improved energy gradually over,the course of months. Slow, but sure.
I am suffering from severe fatigue again now, but it is related to my second cancer, most probably. It is so frustrating!

LaCh
Posts: 509
Joined: Dec 2012

Thanks Marynb....  yeah, the external burns are 98% healed. The mystery pain inside is still there and still a mystery, but a bearable one.  I told my gastroenterologist that I imagined her doing a biposy in a few months and coming to tell me, Jeeze, no WONDER it hurts so much, you have a piece of glass stuck up there.... or something like that.  My plan was--or is--or was--I'm not sure, to start walking on a treadmill in March at a gym that I get free access to from my health insurance....  So we'll see,  guess.  I'm not happy to hear that you're having issues with the second cancer...no, I don't like that.  I've always said, in life, anywhere you look, there's always someone healthier than you, less healthy than you, nicer then you, not a nice as you, smarter, not as smart, richer, poorer, better, worse, and so on.  I feel pretty lucky in life but I've never really felt unlucky.  I was listening to the story of Tig Notaro, a stand-up comic who had breast cancer a short time ago and a double mastectomy at Sloan Kettering.  But before that she had an intestinal infection. And after that her mother died suddenly. And after that  her romantic relationship ended. And then came her cancer. All in the course of four months. And I look at that and I think to myself, What on earth to YOU have to complain about???   Anyway, I do, sincerely, hope that you find some relief, whether it's with the fatigue or anything else that comes your way.  You've been very kind to me over these last months and I never forget that sort of thing.   

Marynb
Posts: 1134
Joined: Aug 2012

Thank you for the well wishes. I, like Tig Notaro, could do a stand up comedy routine about the level of bad luck that I have had for the last 13 years! Nothing to do but laugh! Now, when something happens to me, my friends no longer say, "on, no what's next". They are afraid to. However, I have a beautiful daughter and she is healthy, happy, and graduated from college now. I won't dare ask for more! Life is good. I do have a second cancer that I am going to have to tackle again soon, neuroendocrine carcinoma. I mean why have one cancer, when you could have 2? Every day for me is a good day, no matter what! I just want to see my daughter grow into a strong and independent woman before I have to say goodbye. God knows, she has seen me tackle a long list of life's little tests. I only hope that I have been a good enough role model so that when she faces her own obstacles, and I am not here to help her, she knows how to fight through them. I am rambling......:)

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Lorikat
Posts: 551
Joined: Jul 2011

Amen.  Fatigue isn't a strong enough word.

LaCh
Posts: 509
Joined: Dec 2012

ja ja ja I dunno why, that makes me laugh but no, it doesn't.  I dunno what else you'd call it though. The walking-through-waist-deep-mud syndrome?  Too long. Maybe just deep mud syndrome.  Yeah, man, I got the deep muds.  Bad. 

Lorikat's picture
Lorikat
Posts: 551
Joined: Jul 2011

I like that!  Imagine.... Howe are you feeling?  Answer:  mud deep!  I already have my "crappy" days, now I can have " mud deep" days.  Our very own language!

BBdogs's picture
BBdogs
Posts: 36
Joined: Jan 2013

Fatigue as in "my feet, hands and head are encased in cement"?  Or does it get worse? 

I slept yesterday for about 18 hours and still could barely put one foot in front of the other, fell asleep during 3 minutes of radiation and I am only 1 week in.   

Today is better, I am (at least have been) a high energy person.

Hope you have some good days mixed in with the bad and hope that very soon they are all good days! 

LaCh
Posts: 509
Joined: Dec 2012

You know, my massage therapist at Sloan kettering asked me to describe it and I said that I couldn't, really. The best I could do was to say that it feels like you weigh 500 pounds.  As for falling asleep on the table, I did that once too....  Thanks for the good days/bad days wishes.  I just hope that I can pull it together--no, that's not right either--I hope that it rghts itself by the spring so that I can take my dog to the park and not be curtailed by fatigue.  This poor child hasn't had a decent walk in months. 

jcruz
Posts: 206
Joined: Jan 2013

I agree that it needs a new name!  

I can't say how happy I am not to be almost constantly under that overwhelming fatigue I felt in the early post-treatment days.  Everything and nothing wore me out a few months ago.  Now 4 months after treatment the worst of the fatigue is gone.  I'm not 100% but I think I've got a good 5 hour day in me.  I'm counting on that as I go back to work half-time in a few days.  These days when the fatigue hits me it's not nearly as severe as it used to be and I can take a little rest and get back to the puttering around kind of life I've been living.  Going back to work will be very interesting.  I'm hopeful but apprehensive about re-entering normal life.

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I wish you all the best with your return to work.  I hope the half-time schedule will be just right for you!

jcruz
Posts: 206
Joined: Jan 2013

I'm looking forward to work but it is going to be such a change.  I'm having a few days of heightened anxiety - I think I went through a whole box of kleenex yesterday when I fell into a crying jag.  I'm never good at anticipating something new and I think this is my usual anxiety multiplied.  For me there are so many layers of emotion around this illness, treatment, healing, retreating from the world and then returning.  I'm trying to take it a minute at a time.

LaCh
Posts: 509
Joined: Dec 2012

I finally figured out a good metaphor for this fatigue. It's like I'm a battery that won't take a charge. I remind myself of my iPod Touch which is now belly up and unusable because the battery won't take a charge anymore.  I go to charge it and I see the red bar, indicating that it has no charge. After 4 hours of charging, it got a skinny green bar which will give me about 10 listening minutes, then it's dead again.  So, I AM my iPod Touch. The reason that this came to mind is because I was walking to my Sloan Kettering Integrative Center massage a few blocks from my house, and I thought, "Hey, this is like the old me."  I was walking at a pretty good clip...for 2 blocks.  Then, my little spurt of energy was spent, I was back in the red and the batteries had run dry.  I just cannot seem to take a charge or keep a charge.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

LaCh: How well I remember that horrible fatigue. To me it felt like my legs were made of lead, and I would feel sick and woozy if I tried to overdo it.  I live in a rural area, and love to walk along edges of fields and woods with my dog.... I remember when I finally felt like I could go for a little walk, and all I could do was cross the road, go about 40 feet and lean up against a hay bale, crying with frustration, anger and grief that I couldn't go any further. I think it probably was the most frustrating thing I have ever experienced. Hence came one of the things that I do think I learned from the whole experience - PATIENCE.  And it's a hard one; a very hard one, but maybe one of those things that makes us better people in the long run for having to go through this frustrating and difficult journey........ Just my thoughts, for whatever they are worth..... 

LaCh
Posts: 509
Joined: Dec 2012

I don't feel that kind of frustration, or that kind of defeat, to me it's more astonishment, like, "holy s***, this is NUTS!"  I had to take my dog to the vet the other day and the entire thing, round trip, probably took 40 minutes.  But I was wiped out for the rest of the day, and the place is just a few blocks from here.  I feel like a third-pary observer at times, thinking, "this is the weirdest thing I've ever seen..."    As for the patience/impatience part, I can't really say that I feel that, exactly either, it's more of a "Man, I sure hope this improves by the Spring," sort of thing.  The rest of it, yeah, I'd say that I feel the same. The spurts of energy that make you think, "YES!   I'm BACK!!" that peter out a minute afterwards.  And then you think, "Wow, that was quick."  I don't lose any sleep over it, but it's more of a "I sure hope this resolves rather soon."  I still plan to try walking on a treadmill sometime in March...see if that has any effect.... 

mp327's picture
mp327
Posts: 2819
Joined: Jan 2010

I think you'll find that getting some exercise on the treadmill will be a boost to your energy level.  I started running again 10 days after treatment ended, albeit at a very slow pace and for a very short period of time, but I always felt energized afterwards, at least for a few hours.  I hope your results are the same.

LaCh
Posts: 509
Joined: Dec 2012

we'll see.  I hope so too.

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

It's like there's no reserve left to pull from. Usually when we get tired we've got a reserve bank of energy we can pull from. But with this it's not there anymore.

The only other time I've felt that kind of tiredness was years ago - I had a myomectomy (fibroids, they remove the fibroids and leave the rest of the plumbing intact). Lost a lot of blood. About a month or two after the operation I was making a huge chart on a poster board for the March Madness tournament (this was before everything went to computers) - I made a mistake about 3/4 of the way through and just sat down and cried - not like me at all. I had no reserve strength to pull from - all done in. Something small like the chart mistake (although it was a BIG chart!) crumbled me.

The fatigue or tiredness from this treatment was worse and lasted longer, but that March Madness chart was my first experience like this. But things did get better over time after the cancer treatments. I still don't have the stamina I had before (I'm a little 4 years out from treatment) but things are certainly ok. More than ok - they're great.

LaCh
Posts: 509
Joined: Dec 2012

so what's the general consensus regarding how long acute radiation fatigue takes to resolve?  I know that the answers will vary, but.... in general.... 

Marynb
Posts: 1134
Joined: Aug 2012

I guess I m not typical, who knows. I had major surgery weeks after finishing treatments. I then went back to work full time, 4 months later, with an hour and a half commute each way. I felt ok, but was exhasuted at the end of each day. I have to say to this day, I am not the person that I once was. Maybe that is a good thing? I have slowed down considrably and I am battling fatigue these days. I think and hope that the more typical patient recovers and stays recovered?

You are really early in your recovery! I think you will see improvement gradually. Hopefully, when your body is able to digest food normally again, there will be a big improvement.

Is it snowing in NYC? It is mixed here.

LaCh
Posts: 509
Joined: Dec 2012

I once said to my nmdical onc that "I'm not going to be the same person coming out of this as I was going in," and normally a bit of a Pollyanna, he actually agreed and said, "No, you won't."  But as I said in another posting under this subheading, I've not "come to rest," yet insofar as where I'll be, what I'll have lost and what I'll still have and be able to do.  Regarding the snow, no we had no snow here yesterday, just drizzle and then rain.  

jcruz
Posts: 206
Joined: Jan 2013

I'd agree with islandgirlculebra about sort of returning to my old self around 4 months after treatment.  The worst of the unbelievable fatigue was in the first 4-6 weeks.  Two naps a day, foggy head, etc.  I took two short walks most days and gradually added minutes to the walks.  I would still not say I'm 100% and that's why I've asked to return to work half-time.  Most days now I'd say I run out of steam at the end of the day but I'm not completely wiped out like in the early days.

I think your plan to walk on the treadmill is great and I also think you will be walking your dog in the park come spring.

 

LaCh
Posts: 509
Joined: Dec 2012

thanks jcruz, this is all good to know....  4 months... that'd be the very end of May for me...  that'd be great. It occured to me that adding to my fatigue might be the fact that I'm just sitting around all day and not challenging my body.  If you don't challenge it, it doesn't "rise to the challenge," within reason, of course, considering the circumstances...  I'm going to try to register at the facility where I have coverage this Friday and then will be able to go whenever I want....  and see if the treadmill helps. I sure hope I can get over to the park by the Spring...  well, come hell or high water, I'm going to go, ever if it's for a short while, even if I end up sitting more than walking.  I need it. We both need it (me and my dog). 

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

What I did for my dog when I couldn't walk was lean against that hay bale, and used one of those hand-held ball throwers you can buy at PetSmart so he could get some exercise. Of course that may be hard for you, since you live in NYC, finding any kind of off-leash area for your dog.......The whole time I was sick, though, my dog never "pestered" me to go for a walk; guess he knew I just couldn't do it. They are so smart.

LaCh
Posts: 509
Joined: Dec 2012

no, my dog's been great this whole time, he doesn't pester me to go out and when I was going through the most painful periods and literally covering my mouth with a towel each time I went to the bathorrm, he'd get very upset and come to see if I was ok...as soon as I told him "I'm ok..." whether I was or I wasn't, he was reasurred. having him here with me was--and always is--an absolute blessing. That said, the look on his face when our five-minute walks to simply let him do what he has to do...those expressoins are hard to bear...  

AZANNIE
Posts: 371
Joined: Mar 2011

I'm almost 2 years post treatment and there are times when it feels like someone has pulled my plug as in electric plug. I'm on thyroid medication now. Thyroid was normal before treatment. As for your iPod touch maybe you need a new charger? I have to say that I am able to do things again. Didn't think I would feel this good again when I was going through treatment. It does get better.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

Took about four months for me to feel like myself again. That's not to say the horrible, horrible fatigue lasted for four months. But I mean to feel pretty normal again, as far as energy levels.  

RoseC's picture
RoseC
Posts: 501
Joined: Jun 2011

Adapting is a very important thing. No one WANTS to have to adapt to a lesser situation, but we HAVE to. It's not a really bad thing in the overall scheme of things. I've adapted to not being able to walk too far, and to problems in the bathroom. It's ok. We humans are very adaptable. It takes time - don't expect everything to come at once, but things will be ok. Doggies and kitties adapt rather quickly to a new routine (most, anyway) - whatever it may be. If they can do it, so can we.

LaCh
Posts: 509
Joined: Dec 2012

Well, I'm pretty adaptable but I don't want to adapt prematurely before I know for sure what my "new normal" is. In other words, until I know that I've come to rest and that my body won't regain anything more, I want to push myself so that it does. Once I'm sure that "this is it," whatever "it" is, I can accept it. I might not like it, but better to make peace with what you can't change than to chafe under it; I just want to be sure.

LaCh
Posts: 509
Joined: Dec 2012

Ok, thanks, that helpful to know, not set in stone but a good guidline. Thanks.

LaCh
Posts: 509
Joined: Dec 2012

I think I'd be mentally better able to cope with a day here or there than I would be with a permanent, pervasive fatigue that prevented me from doing the things that I want to do. That said, I don't think I get a vote on it; I get what I get.  As for my iPod Touch, no, sadly, it's the battery and I've been unable to even get on the subway to take it downtown and get the battery changed. Normally a simple thing, even a short subway ride is beyond me at the moment.  But it'll get done eventually.

Angela_K
Posts: 370
Joined: Jan 2011

Glad you brought up thyroid, Ann.  My thyroid levels have plummeted since treatment and continue to do so therefore I, too, am on levothyroxine. My thyroid levels had been normal but were low at the time of diagnosis and then just went downhill during and after treatment.  Getting that adjusted did help my enormous fatigue.

I am 2 years post and I am almost polar opposite than I was coming out of treatment as it applies to fatigue.  Still I don't have the endurance that I once had but I am determined to get a little of of that built back up by the big 5-0 next fall.

Time heals many things.

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