Pushing Through Fatigue

[Leslie]

Hi all--

I'm sorry for posting so much--but we have now begun our journey and the realities of cancer are beginning to set in. My dad had SRS last week and he has now had four rounds of WBR this week. He has 11 rounds to go. He is already experiencing a lot of fatigue and weakness. He is a professor and he almost didn't teach class yesterday--he managed to make it...but I'm scared about next week.

I know that fatigue is common with radiation. Has anyone come up with some good strategies for pushing through? We keep reminding him that he really needs to try to keep up with regular activities--but I know how hard that must be when you aren't feeling great. I'd love to hear from some folks about how you keep pushing through--even on hard days...

Thank you in advance.

In gratitude,

Leslie

[trish2418]

Hi Leslie,

I worked half-days while I was doing radiation and took the whole day off (Friday) and the next work day (Monday) off when I had chemo. I took a long nap when I got home from work and went to bed early every night. Fortunately, my employers were very understanding and never made me feel that my job was in jeopardy.

Good luck to your dad during treatment.

Take care.

Trish

[wendyr]

Yes, it's important to continue with regular activities as much as possible but let's not lose sight of the fact that Dad is only recently diagnosed and the stress from that alone is huge and can wear you out. Add to that the treatments and it's no wonder he's exhausted. Moderate activity & excercise, good diet & lots of rest & don't overlook the importance of extra hydration. Good Luck & God Bless

wendyr

[Don M]

I have had 2 chemos..the first one I was working and found that I had to take some days off. The second one I was retird and although I exercised, I also napped. I would be active in the morning, take walks, do housework, but I slept in the afternoon.

don M

[Nova]

I only know that Harry worked thru 2 chemos, but when the radiation started, along with the 3rd chemo, there was absolutely no way he could.... He could barely function.

I'm glad your dad has been able to keep going in, but I would also stress to him that his body might need some "time off", just to lay around on the couch and watch old movies or something....

[pammie]

just finished WBR. Fatigue put me in bed for long naps every day. Don't let dad push himself too much. Not a realistic expectaction to function normally while having WBR. Very fatiguing experience. praying for all. pammie

[Adrian]

Dad seems to be doing pretty well through his fourth WBR session---though he is certainly feeling tired. He is napping every day. My mom is going to try and get him to go for a jog or a walk.

With respect to exercise and eating we're trying to get him to adopt the philosophy: I won't do more than I feel up to, but I' will do what I believe I can.

One good thing is that he is loving the Ensure Plus drinks that I bought him---so if he's sucking those down in addition to reasonable meals hopefully he'll start putting back some of the 8 pounds he has recently shed.

[Tanner]

WBR is tough. Imagine having the brain radiated!! My wife was DOWN with her WBR. But about 2 weeks after it ended, she was ready to get back up. Plus take into account the shock and depression of being diagnosed. Don't push him too hard. His body is gonna need time to recover from the radiation and his spirit may need time to recover from the diagnosis.

Take care

Tanner

[daddyslittlegirl]

I know what you mean, my dad keeps saying that he can't understand why he's so tired. He fights it to keep going. Our secret weapon is my kids. I have a 2 year old and a 4 year old. Even though I live about 40 minutes from my parents, I try to make it up there 3-4 times a week. He really enjoys the time witht he kids and they sure help to keep him going. Of course we still encourage him to take his naps. I'm pretty impressed with your dad. I mean working through all this and now jogging! WOW! If your mom can get him to do that he must be pretty amazing.

[recce101]

[ Adrian ] With respect to exercise and eating we're trying to get him to adopt the philosophy: I won't do more than I feel up to, but I will do what I believe I can.

I believe that's a good approach, and it stops short of pushing through what used to be a normal day or keeping up with what used to be regular activities. Your dad knows his own body better than anyone else, and if it's telling him to rest, he should rest!

He doesn't sound to me like the kind of guy who looks for any kind of excuse to goof off, physically or intellectually. He has an inner drive that's guided him to this point in his life, and he's not going to lose that. I haven't had WBR myself, but from what I've read, the fatigue tends to build, and there will be days when what he feels up to will be WELL short of normal. Chemo is a different animal. The side effects are somewhat cyclical, but there's lots of room for individual variation and a few surprises. For me, the second, third, and sometimes fourth days after infusion were definitely nap days, and I never "planned" to do much else. For the remainder of the 21-day cycle, fatigue was not a problem, but other side effects (especially sores on the feet) often limited my activities.

The days when fatigue or some other problem prevented me from doing what I wanted or needed to do were quite frustrating, and the frustration built up over time. I think your dad is and will be the same way, and an outside push to do what he already wants and needs to do but can't manage physically will not help. One thing I'll guarantee -- when he eventually does start to feel better, there will be no holding him back!

One last thought. I get the impression that your dad's teaching duties are quite important to him, and that's great. Having to curtail his teaching significantly would probably be a major disappointment and add even more stress into the equation. Is there anything you folks can do to help him conserve energy for that particular activity? Like driving him to and from class if he's driving himself now? Or if the driving thing doesn't apply, maybe there's something else. Just a thought.

Best wishes and Aloha,

Ned

[Adrian]

He doesn't sound to me like the kind of guy who looks for any kind of excuse to goof off, physically or intellectually. He has an inner drive that's guided him to this point in his life, and he's not going to lose that. I haven't had WBR myself, but from what I've read, the fatigue tends to build, and there will be days when what he feels up to will be WELL short of normal.

I agree that the teaching means so much to him. fortunately we live so close to the university getting him there is a snap.

the thing about my dad is that he has a professor's disposition. he is sweet and loves to laugh, but he is reflective, subdued and I think he would agree---a bit lazy. Not to mention all his life he has loved to please other people---as a sociologist, he is incredibly sensitive to the thoughts and sensibilities of others. He's not really the Lance Armstrong fighter type. That said, I believe he has an incredible inner drive, but he is still getting used to the idea that it needs to be activated---that this is his next and most important project

[Kirsty]

I agree with Ned - and would just add that there is a fine line between encouraging your Dad to continue "as normal" and pressurizing him to do so. The whole point about this situation is that once this diagnosis is on the table, nothing is "normal", ever again, which takes some getting used to. With this particular treatment, he is going to get tired; he is going to need to take it easy; he is very likely to have to stop teaching for a bit to pick up his strength again. What will not be helpful to him is if he keeps going for longer than he really should because he feels he must, and by tiring himself out he might be putting himself at greater risk of some other complication - an infection for example - which could have an even greater impact on his quality of life.

[Welthy]

Ditto Ned and Kirsty. The "new normal" is what we call it around here.

Welthy

[dchurchi]

When Alan has his WBR sleep was about the only thing

he felt up to. So that is what he did, sleep. He eventually returned to his daily activities

once treatment ended.

[Adrian]

Thanks for your comments all.

all things told, last week was a pretty good first week of WBR for dad. Fatigue and light nausea were the chief complaints. He didn't end up exercising but he taught his weekly seminar, worked at his office on several afternoons and actually gained a few pounds thanks to his instant taking to Ensure plus.

Though, the new normal dynamic is certainly in play for us---track down some of my prior posts if you dont believe me!--my dad seems to be proceeding to the extent possible as if he wasn't sick. And to the extent possible, so are we. (This certainly does not mean, however, that we aren't scared and always trying to figure out what he needs to be doing and when he should be doing it)

This disease is the "great" interruptor, and every day that you can live your life more or less on your terms is a good one.

Here's to hoping the second week goes as well.

[Judy-OK]

I think your dad will do just fine and he has some great family looking out for him. When I was in the midst of radiation and chemo ... I do believe that if someone had suggested I go for a jog ... I would have expended what little energy I had left chasing them out the front door of my house. LOL Keep his spirits high and keep him hydrated.

[Adrian]

Just wanted to let you all know that the second week of WBR went as well as could be hoped. Leslie came into town on Wednesday and stayed through yesterday. Dad was very tired all week, but managed to teach his weekly seminar. We hung out a fair amount and his appetite was pretty good. He threw up once on Thursday or Friday, and has had several bouts of mild nausea.

Tomorrow he is meeting for the first time with a pulmonologist to get his opinion on my dad's persistent dry cough. So far, we've tried Robitussin, Tessalon pearls and Cherrratusin. nothing has really worked. That said, the cough has seemed to get milder over the last few days on its own accord.

overall, going into session 10-15 of WBR we're ready to be done with it so that we can turn to chemo+avastin to address the primary "issue."

On a side note, on Friday a distant cousin who lives abroad came to town to be with dad for a while. I have quickly learned that at this early stage in our new normal, people even with the best intentions can upset the delicate balance that is living with cancer. Before I knew it, my sister was calling me sounding extremely bummed out---

Finally, just wanted to throw in, a thank you to all for your continuing care and concern. You are truly an extended support network that has been essential to me and family (re)gaining balance and strength.

[fillise]

Adrian and Leslie--I'm glad to hear that your Dad's WBR is proceeding smoothly. Even so, it still STINKS as we find our way to the "new normal."

Thinking about you,

Susan

[Flowergirlie]

I have learned that there is no such thing as living life on your own terms...life has a way of taking the reigns when you do not expect. It may be that you have an extended period of time where the odds are in your favor, but no guarantees unfortunately. I love sociology...it is such an interesting study.

There are many aspects of cancer that force an adjusted way of thinking. I hope your dad has great success with treatment and is able to maintain his energy level with little to no side effects. I am sorry you, dad and your family are going through this. It is so important to always listen to what your dad needs too.

Peace...Flowergirlie

[lc46]

I hope your Dad continues to do well with treatments-take advantage of your "normal life" as much as you can. We have certainly learned to live our lives one day @ a time with this horrible disease. Everyday my Mom is feeling well and like her "old self" is a blessing.

Take Care

Dar

[Leslie]

Today was the first day that my dad decided not to teach class. He was just too tired. Next week is the last week of classes, and he's promised himself that he will be there...I am so proud of him. His hair is coming out--but he is strong. It's very interesting to watch him deal with the cancer at this point--he treats it like a bad cold, an inconvenience, an annoyance--but nothing more...so that's how I want to treat it too!

I just want to say a special thanks to everyone who responded. Your wisdom, strong messages, and insights are so helpful...Though my family is in an unlucky situation, we remain a lucky family--particularly to have support like this.

In gratitude,

Leslie