3rd chemo cycle blues

[ts]

Hi all,

I've been doing really well on the side effects from treatment so far - I still have my hair and taste-buds! I have fatigue, but went to work part time for a couple of weeks before taking last week after the 3rd round infusion. I expected to go to work half time this week and next, then take a week off after my 4th infusion and then see what was up for the month prior to and the 5-6 weeks of radiation. I haven't worked since surgery except those two weeks - it makes me feel like a slacker.

I did not make it in on Monday and 4 hours yesterday wiped me out (sleep, felt sick, got all emotional - that happens when I get overtired.) I woke feeling fluish this morning, and while I feel okay now, my stomach is not great and I just don't think I have the reserves to work even part time. I think I have given myself permission to not work until chemo is completed and then see what it takes from there. I haven't had a clear discussion with my employer about this yet. My onc says rest now and I will recover better down the road. I'm really concerned about the 5x a week radiation - she says it easier than chemo, but just knowing that it is coming makes me anxious.

I think I was going to work to have some mental stimulation and be around healthy people with something else on their minds (not to mention a little concern about keeping employed in today's lovely economy.) I think I might be better off getting together with friends in no stress situations? My turn to ramble a bit - I'd appreciate hearing how you decided when too much was too much and what I might expect from radiation (I think it will be concentrated on the area on the trachea where the hot lymph nodes were removed.)

Thank you all.

[Bruce u]

Hi ts

I think working during chemo may be different for everyone. I had 4 rounds of chemo and found that fatigue got worse with each round. There was a gentleman next to me that would take chemo day off but go back to work the next day. I think it effects everyone different. I can also understand your desire to have some kind of normalcy in your life by going back to work. For me I think sitting around the house and having too much time to think was more difficult than the physical side effects of chemo. Fortunately my boss's wife was also dealing with cancer and he was very supportive. My insurance covered my salary but he made it clear that I could go into work and " volunteer " whenever I felt up to it.

[dadstimeon]

I worked 8 months after I was (did not start treatment until 6 months after my diagnosis) diagnosed and could no longer do it. My job was not hard at all but it was 12 hour shifts,weekly overtime and on call 24/7 so was hard to keep up that schedule. I took it in steps first working as long as I could, going on short term disability then long term disability and then finnally realized I had to retire on SSD. I had 35 years into the system and being Stage IV is automatic so no problem there. I felt that it was not fair to go to work, collect a paycheck, benefits etc when I could no longer perform my tasks and not fair to expect my co-workers to do it for me. It's lung cancer 101 and you learn as you go along. Your right it is important to keep busy and have as much a normal life as possible. There are other things I did, joined this message board, got together with other members here and started the Boston Walk, do things around the house/yard when I can and do things with my family/friends when I can. Also keep in mind you will find people are long on talk and short on walk, what they say to ones face and what they say behind ones back is two different things. You have to do what you think is best in your (if you have company benefits work with your Boss/HR Department and have them advise you on what steps you need to take that best helps your situation as well your employer) situation and what you think is the right thing to do. It's a full time job battling lung cancer/other health issues, staying alive and then add on everyday life so one should not feel guilty if one cannot do things the same way or keep up with everyone/everything. Hope this helps. Good Luck.

[Bud Baker]

ts,

I think Bruce is right. Chemo affects us all differently, and you just have to do what you can, when you can, and not fret about what you can't do.

I was back on my bicycle 15 days after surgery, and would have been back at work shortly afterward, if the doctors had given me a release. But with chemo, there were days where I just couldn't function, and not just at work. On my birthday last April, I was going to join a bunch of cyclist friends for a picnic they were having after a ride. Unknown to me, my wife was going to pick up a cake and turn the gathering into a birthday party for me. Two hours before we were to leave, I went back to bed. I just felt too bad to do anything.

I also had days at work where I just had to give up and go home after a couple of hours. I say just accept that there will be days like that, and don't worry about it. Easier said than done, I know, but I think that's the best frame of mind.

Hang in there, and I hope you have better days soon.

[SandraL]

Hi there. I wouldn't feel too bad about not being able to work while undergoing treatments. Focusing on that and keeping yourself well rested and healthy should be your first priority. Work can come later. It is tough though. I missed work during my first line treatments and was so happy to go back to my positive work environment and professional interactions.

Radiation is generally way easier to get through than chemo. But your side effects will depend on the exact location and everyone is different. I experienced very few side effects from radiation. So just go into it thinking you will not experience many side effects and just be on the watch for them.

Best of luck with your radiation. And please keep us posted on how you are doing.

Sandra

[jaminkw]

ts, I usually read all the replies to a post so I don't repeat what others have said but I have only a little time left. I used to do what you are doing and am now saying, don't. Don't compare yourself to other people. Everyone's treatment is a little different even if only in the way our bodies respond to it. Listen to your body. It's telling you to listen to your onc. And yes, I think it would be much better right now if you got your socializing and mental stimulation in relaxed situations with your friends. You probably should have that talk with your employer soon but be real upbeat with him with your projected return. It would be better to adjust it down later than risk having him/her panic.

Judy in Key West

[ts]

Thank you all for your kind words and stories.

I'm not really comparing my treatment to anyone else's, I thought I was figuring mine out just in time for chemo to end. Two cycles were fairly predictable and the 3rd started out likewise. It took me by surprise that the fatigue was so much worse after cycle 3 than 2. Why that was surprising, I don't know. Cycle 4 starts Friday. Last one - I've already scheduled the port removal.

It's that "new normal" thing I am still adjusting to. Right now, about 1-1/2 hours of activity is my limit (that is as light as going out for dinner, or sitting and waiting for the car to be serviced, not actual activity!) and then I want to be home. Sounds like my 89 year old father actually.

So, I am not working while this treatment is happening, and will wait and see about radiation. I've applied for some DI benefits - that would ease the situation some. Unfortunately (?) no one at work has ever used the policy, so there is no help there. I think I should qualify, and my onc does too, at least for a few months.

I am also working with someone on some PT work to get my body back functioning / moving properly. One thing she asks is that I focus on my happy place while working out - something as simple as a place I've hiked to, or a food I like to eat. It's really interesting how much more range of motion I have when I do this! I think it works well for other things as well - like when I woke with a headache this morning, I tried this and the headache went away with no drugs other than eating a banana (maybe I needed the fruit?)

Hooray for happy places.

[jaminkw]

ts, sounds like you have a good plan in place. Yes, I was taken by surpirse also when the side-effects got so much worse beginning with I think for me the 4th infusion. The fourth and fifth kicked my butt and when I went for the sixth I told my onc it was good it was the last, I only had it in me to do one more--that was it.

Hard to say how long the fatigue will last. I was on Avastin maintenance for 8 or 9 months after the six big infusions. I've been off everything for 3 1/2 months now and the extreme aching and pains throughout my body have subsides and my energy level is beginning to finally feel normal. I'm actually trying not to wear myself out totally trying to catch up on all I neglected the past year-and-a-half.

I know about that happy place thing and use it now mostly if I have problems sleeping. Never thought about doing it while working out. I'm going to try it. I have the total Gym and am working on getting back up to the level I was on pre-dx. Every time I do it is a struggle.

Keep us posted on your situation.

Judy in Key West