Still very weak 2 weeks after neo radiation & chemo

BRHMichigan

Greetings.  I have been reading all of your experiences and so appreciate everyone here.  I am scheduled for surgery Oct. 3 and am having difficulty gaining any strength in the meantime.  I have been lying on my couch since I started radiation in mid July, completed 2 weeks ago.  Standing up for even 5 minutes seems impossible.  Docs want me to take 2 10-min. walks a day and I can't seem to do it!! Might be anxiety or depression....Anyone else feel impossibly weak at this point?  I appreciate any advice or encouragement.  Thanks, -- Beth

NHMike

Hello Beth,

Hello Beth,

I'm about two weeks behind you as I started the last day of July and I have four more days of chemo and radiation. Another user, Airborne72 seems to be right where you are as he is also two weeks ahead of me. He has reported tiredness and other symptoms. I don't know the degree of tiredness relative to how you feel though. Has the tiredness been somewhat progressive or have you felt wiped out since starting and the level of tiredness consistent throughout?

Were you active before starting chemo and radiation? Did the news and tests wear you down? Did you have weight loss before starting chemo and radiation and have you had weight loss during the chemo and radiation?

I lost about ten pounds in the time between diagnosis and treatment. I had anxiety which could keep me from getting enough rest and I will say that not eating enough to maintain weight can make me quite tired, and cranky. I've heard that most feel that they can get rather tired on the 5FU chemotherapy and I certainly can get the feeling of a wave passing over me an hour or two after taking it that makes me feel tired. The radiation damages your body and trying to repair things may result in feeling tired. Having to go to the bathroom and doing painful BMs can wear me out. So there are lots of things that can contribute to tiredness.

That said, I asked the oncology nurse about people working and she said that the vast majority of her patients continue working through chemo and radiation. They often report feeling tired in the afternoon. I'm continuing to work full-time as well though I will take a vacation day if I need one. There are times when I feel impossibly weak and where I will sleep for maybe 8-10 hours soundly (with maybe a trip or two to the bathroom). But then I will feel a lot better afterwards. I will sometimes take naps during the day. These are somewhat counterproductive overall because it will mean that I won't sleep as much at night.

I often find that taking a walk will clear up being tired or feeling crappy. It seems counterintuitive but it often works. Walking will also help with GI issues like constipation or gas. If you feel that it's anxiety, then I would encourage you to talk to someone about it. A friend, family member, counsellor, or folks here. You certainly have concerns about the cancer and likely concerns about a lot of other things. Cancer puts our lives on hold and that creates further problems. You could check with your doctor on your test results to see if there are other issues contributing to your tiredness. They should have a fairly comprensive read as they do test a lot of things (at least they did for me).

If you can't do a ten minute walk, try something shorter and then work your way up. I really should go out for a walk myself right now. I do hope that you feel better. You need to build up your strength, physically and mentally, for the surgery.

 

 

 

BRHMichigan

Thanks so much for your input

Thanks so much for your input and suggestions, Mike.  I opted to go on short term disabilit until after my surgery. Although I can work from home, my job is intense. I have lost 40 pounds since April (from 200 to 160).  I attribute that to stress, giving up all carbs for the first few months, and the cancer itself.  I wasn't very active except going to the gym to swim about 3x a week.  Something I miss terribly and might need to start up again!  

We have 5 children from 18 to 29 who need their mother.  I lost both parents to cancer and would love to spare my family that pain.  This shpuld be enough to inspire me to get active.  

 

I am pretty constipated, but still have the urge about once an hour.  Lots of straining.  You are right - that causes pain & exhaustion.  Also fear about losing my rectum, etc.  Oy, this is one ugly cancer.  

It's so helpful not to feel alone, as so few understand what we are experiencing.  I will check out Airborne72! 

Thanks again and have a beautiful Labor Day.

 -- Beth

airborne72

Parallel Universe

Beth:

I read your post this morning and Mike's response and then your reply.  Your place in time with this cancer is virtually the same as mine.  Let's compare notes.  Perhaps that will provide you some insight or reassurance.

Right now I have a stage II rectal cancer.  Identified in mid May through a colonoscopy, that I requested.  I underwent chemo (Xeloda) and radiation treatment from 11 July until 14 August.  My outbrief with my oncologist is scheduled for 11 September, then I will be handed off to the surgeon.  I anticipate a resection surgery in early to mid October.  Like you, I have strong, latent fear that I will end up with a colostomy, but that is negative thinking.

When I entered this event I was experiencing unusual fatigue.  In fact, for the previous year my energy level was very low.  However, I am the proud owner of failed back surgery symptom (two rods and six screws are holding together my lower spine) and have been in pain management for over three years.  That condition has really knocked the wind out of me.  So it is difficult to specify what conditions/symptoms are attributed to chronic pain and which ones are the result of rectal cancer.

I have only lost 8 pounds since May, and most of that since the last couple of weeks of neoadjuvant treatment.  Right now I weigh 136.  Weight loss is relative.  You must compare how much you have lost to what you originally weighed.  Obviously, if I had lost what you have then I would be admitted to a hospital.  The point is that some weight loss could be beneficial (an individual decision/opinion); however, the reason for the weight loss is also important.  Can stress cause it?  Yes.  Can daily routine disruption cause it?  Yes.  Can appetite modification cause it?  Yes.  Can internal physical changes cause it?  Yes.

You described your fatigue and it is more severe than mine.  I began to experience days of fatigue about half way through chemo/radiation.  I finally accepted it and took naps to counter it.  Today marks three weeks since I finished treatment and I still have some fatigue.  I just read that sentence and I don't believe I am being honest with you or myself.  I have fatigue.  Yesterday I struggled to cut just the front yard.  A task that used to take about 15 minutes and no energy now takes me almost 45 minutes with several rest breaks.  So yes, Superman can no longer jump over tall buildings in a single bound.

I don't believe that I am hamstrung from anxiety or depression, but that one too can be very insidious and cause us to have a huge blind spot.  My behaviors are not similar to yours in that regard.  I am constantly doing something, even though those things have now been downgraded to less physically demanding.

Beth, know that I am not a medical practitioner, only another person who is fighting against rectal cancer.  I say that to say this:

1) Identify something to motivate you to continue to fight, for example in your case the loss of parents to cancer.  For me it has been the recent birth of our first grandchild.  I was determined to appear strong and healthy during her arrival and not be a distraction.  Now it is the determination to BE AROUND for her as she matures.  I will be 84 when she graduates high school, but I WILL BE HERE.  I will be 88 when she graduates college, but I WILL BE HERE.

2) Seek professional dietary advice.  I would not recommend experimenting with your diet, especially considering your weight loss.  What I realized was that getting anything over the lips, through the gums, look out tummy, here it comes was the objective.  All of a sudden I reintroduced items in my diet that I had not eaten in decades (Cokes and Egg McMuffins) and I made it a habit to eat ice cream every night - even if I did not want it.  That was a temporary lifestyle change.  I have full intent to revert to drinking water instead of caffeinated, sugary beverages and to only eat ice cream when I want to, not because I have to.  Again, seek professional dietary advice.  Your cancer treatment clinic should provide it for free.  If not, then go online to the American Cancer Society and do a search for diet.

3) Get yourself mentally prepared for your resection surgery.  We are running parallel on this issue.  Accept the fact that it will be uncomfortable and inconvenient.  But, also accept the fact that it is a significant component in the effort to eradicate this cancer.  It is a must.  Yes, that nasty thought of a bag remains, and floats to the forefront of our minds.  However, if we expend energy worrying about something that we can't do anything about then we are wasting precious energy.

4) Embrace the new normal - the new normal for Beth and the new normal for Jim.  Our lives have changed.  Period.  There is no arguing that point.  And even more change awaits.  We must accept the new normal.  The Chinese character for change has two meanings: one is opportunity and the other is danger.  Change can be good or bad.  It can be positive or negative.  It can be beneficial or adversarial.  How we approach that change and then respond to that change will determine the outcome.  I remember a portion of a poem that we had to memorize in the 8th grade.  It is applicable.  "I am the captain of my ship, the master of my fate."

5) Take advantage of any psychological counseling services available through your cancer clinic.  This forum is very informative and therapeutic for me.  These stories are real and often provide solutions to my challenges.  If not, at least they validate my misery.

6) Miralax has proven to be very effective in managing constipation for me.  I was dealing with this issue before rectal cancer due to the amount of opiod medication that I take.  When the radiation oncologist mentioned diarhhea as a possible side effect, I laughed and said "bring it on."  My pain associated with bowel movements has diminished and I attribute that to the healing of the tissue in my rectum.  For a while it felt as if I were splitting apart and literally eliminating my intestine.  Or, I had ingested razor blades, broken shards of glass, and lots of acid and it was passing through my anus.

I have dealt with cancer before.  Since 2012 I have had active skin cancer and still do.  It is a nuisance.  In 2009, I was diagnosed with prostate cancer and had all of that surgically removed.  To date there has been no recurrence but that treatment did not come without any side effects.  Thanks to prostate cancer I became impotent at the age of 58.  Comparing those cancers (effects, treatment, change in quality of life) to this cancer, I agree with your description.  Colorectal cancer is nasty.

If nothing else, at least now you know that there is someone else who is walking the same path.  Good luck Beth.  You have 5 good reasons to get up and get after this disease.

Jim

BRHMichigan

Sharing a path

Jim, 

We are definitely on a very similar timetable with our treatments.  I feel like such a whiner after hearing of your back surgery and bouts with two other types of cancer.  I am humbled by your amazing drive and attitude.

We also have one grandchild who just turned two.  Watching her grow inspires me daily.  Like you, I am determined to be here for her.

I am also lacking appetite so if something sounds yummy, I am going for it.  My weight loss improvedboth my blood sugar and my blood pressure so the docs encourage me to eat what I want.  CranGrape has been my go to drink.  Soda tastes terrible as a result of the Xeloda.  I will, however, avoid red meat and lunchmeat, and too much sugar.  

I loved the chinese character analogy.  You are so right about us choosing positivity.  Your attitude is stellar. 

Miralax has never helped me much.  I've relied on senna leaf tea, but it can be strong.  I may try some Miralax again.  Seems much of my life revolves around going to the bathroom.  But...I appreciate not going every 15 minutes - which is where I was a few months ago.  I am grateful to have the urge once every hour or two.  Opioids constipate me pretty bad.  But when I need one I take it.

I have learned from this board that accepting our new normal is so important.  I am working on it.  I know my family wants me arpund regardless of whether I have a bag, or am sitting on the toilet half the day, or napping the day away! 

I look forward to comparing notes.  Again, thank you kindly for the great advice and encouragement.  Right now I want a veggie sub from Subway.  We'll bbq for dinner.  Happy Labor Day.

--Beth

NHMike

BRHMichigan said:

Thanks so much for your input

Thanks so much for your input and suggestions, Mike.  I opted to go on short term disabilit until after my surgery. Although I can work from home, my job is intense. I have lost 40 pounds since April (from 200 to 160).  I attribute that to stress, giving up all carbs for the first few months, and the cancer itself.  I wasn't very active except going to the gym to swim about 3x a week.  Something I miss terribly and might need to start up again!  

We have 5 children from 18 to 29 who need their mother.  I lost both parents to cancer and would love to spare my family that pain.  This shpuld be enough to inspire me to get active.  

 

I am pretty constipated, but still have the urge about once an hour.  Lots of straining.  You are right - that causes pain & exhaustion.  Also fear about losing my rectum, etc.  Oy, this is one ugly cancer.  

It's so helpful not to feel alone, as so few understand what we are experiencing.  I will check out Airborne72! 

Thanks again and have a beautiful Labor Day.

 -- Beth

I see that Jim replied to you

I see that Jim replied to you and provided great advice as usual.There are a lot of people that have gone through this process in the past or in somewhat different variants of it. It's been pretty quiet on the board this weekend and maybe a lot of people are taking time off for the last holiday of they summer.

BRHMichigan

NHMike said:

I see that Jim replied to you

I see that Jim replied to you and provided great advice as usual.There are a lot of people that have gone through this process in the past or in somewhat different variants of it. It's been pretty quiet on the board this weekend and maybe a lot of people are taking time off for the last holiday of they summer.

So Helpful

I'm really pleased with the responses.  I am also very impressed with the research you've done, based on what I've read here.  I will be going to a Vitamin C IV clinic next week and am very hopeful about it.  I am also interested in how nutrition can help.  You and the others here are the best resource for me at this point.  Thanks, --Beth

NHMike

BRHMichigan said:

So Helpful

I'm really pleased with the responses.  I am also very impressed with the research you've done, based on what I've read here.  I will be going to a Vitamin C IV clinic next week and am very hopeful about it.  I am also interested in how nutrition can help.  You and the others here are the best resource for me at this point.  Thanks, --Beth

There was a post here about

There was a post here about four things that have research behind them to decrease the chances of recurrence:

Exercise, tree nuts, regimen aspirin and vitamin D3. There's a guy here with additional recommendations and he's done a lot of background work on nutrition to fight cancer or make the chemo more manageable.

NHMike

I think that fatigue is apt

I think that fatigue is apt here. I expected to bounce back shortly after but I have far less stamina than before. This morning I took out the trash, put in a new bag for the vacuum cleaner, cleaned the dryer vent (12 feet off the ground), took out the carpets in the trunk and cleaned them and put them back and was rather exhausted when done. This afternoon I changed some fluorescent lights in the basement (20 minutes) and was exhausted from that and took a one-hour nap afterwards. I had a couple of almond biscuits and a cup and a half of rice which helped but still felt weak and tired. I was really hoping to take care of a lot of home maintenance stuff (I had planned to paint part of a bathroom ceiling today but no time and energy) but I'm going to have to take it slower than I want. I do think that I may need to eat more too but I will monitor energy levels. I suspect that Red Blood Count and H&H will need to recover for my energy levels to get back to normal.

BRHMichigan

NHMike said:

I think that fatigue is apt

I think that fatigue is apt here. I expected to bounce back shortly after but I have far less stamina than before. This morning I took out the trash, put in a new bag for the vacuum cleaner, cleaned the dryer vent (12 feet off the ground), took out the carpets in the trunk and cleaned them and put them back and was rather exhausted when done. This afternoon I changed some fluorescent lights in the basement (20 minutes) and was exhausted from that and took a one-hour nap afterwards. I had a couple of almond biscuits and a cup and a half of rice which helped but still felt weak and tired. I was really hoping to take care of a lot of home maintenance stuff (I had planned to paint part of a bathroom ceiling today but no time and energy) but I'm going to have to take it slower than I want. I do think that I may need to eat more too but I will monitor energy levels. I suspect that Red Blood Count and H&H will need to recover for my energy levels to get back to normal.

II am impressed by all that

II am impressed by all that you accomplished in one day.  I took senna leaf tea last night and have been in bed all day due to painful cramping.  

But...since my original post I have noticed I am getting stronger every day.  My appetite hasn't improved much.  But when I do eat I am trying to stay with healthy choices.  Good sugestion about checking my most recent blood tests.  

NHMike

BRHMichigan said:

II am impressed by all that

II am impressed by all that you accomplished in one day.  I took senna leaf tea last night and have been in bed all day due to painful cramping.  

But...since my original post I have noticed I am getting stronger every day.  My appetite hasn't improved much.  But when I do eat I am trying to stay with healthy choices.  Good sugestion about checking my most recent blood tests.  

I'm glad to hear that things

I'm glad to hear that things are getting better. Improvement = hope.

Jim had a post about two weeks ago where he indicated things were tough after the chemo/radiation ended and that the low point may be after they end. I had hoped that the end of chemo/radiation would be the low point but it may be that there's some weakness for a time after it ends, before it starts getting better. I did manage a day at work so that's good though I did that on Friday too. I don't want this thing to interfere with work and it really doesn't as I can manage mental work - it's the physical that's a problem.

It is hard to figure out what's healty. The medical folks say BRAT/low residue which isn't really healthy but it may help heal the rear end faster. So I'm going with the BRATish approach for now. Doctor suggested 2K to 3K IU of vitamin D so I'm going to do that. He also was fine with me contacting a CRC specialist at Dana Farber who's also a guru in nutrition. It turns out that he was my doctor's mentor (not sure if that's the right term).

darcher

I just completed 28 rounds of

I just completed 28 rounds of chemo/radiation this past Monday.  The first couple days have been like all the others.  Some fatigue and constipation but it seems to have increased a bit the last day or so.  I'm not the type to lay around.  I can't. There is too much to do for this type A personality.  I think it's beneficial to stay busy and not let our minds enter that dark pit of cancer.  Not sure why but if I start thinking about it I really get run down and it becomes a chore to move very much.  Same with any mental stress.  It doesn't take much to provoke a vomiting episode if I allow any thoughts of being sick to creep in.

 The constipation is a worry to me.  Although I don't push when I go which is me being paranoid that I might rip something I sometimes worry it's an indicator the radiation/chemo didn't work.  My tumor is located right at the juntion of the Sigmoid and rectum and is partially blocking up the works.  I'll know more once they do the PET scan in a couple weeks. It's probably that the insides have been cooked and aren't as flexible as they once were.  Seems logical.

I was told that the affects of radiation last at least a couple weeks so I'm trying to be hopeful. One thing I found that kills constipation is an old laxative remedy.  Castor Oil.  That stuff will have you going in a couple hours.  Best bet is to be near a bathroom at all times for a while.  It beats Senna S but the taste and slimey texture will make you want to throw up. Two tablespoons will do the trick although the results are diarreha but to me it's better than being so plugged up I'm afraid to eat anything.  

 

danker

Brat

Mike should have told you what Brat meant.  It is: bananas,rice,applesauce,and toast.  Good luck to you both!

BRHMichigan

darcher said:

I just completed 28 rounds of

I just completed 28 rounds of chemo/radiation this past Monday.  The first couple days have been like all the others.  Some fatigue and constipation but it seems to have increased a bit the last day or so.  I'm not the type to lay around.  I can't. There is too much to do for this type A personality.  I think it's beneficial to stay busy and not let our minds enter that dark pit of cancer.  Not sure why but if I start thinking about it I really get run down and it becomes a chore to move very much.  Same with any mental stress.  It doesn't take much to provoke a vomiting episode if I allow any thoughts of being sick to creep in.

 The constipation is a worry to me.  Although I don't push when I go which is me being paranoid that I might rip something I sometimes worry it's an indicator the radiation/chemo didn't work.  My tumor is located right at the juntion of the Sigmoid and rectum and is partially blocking up the works.  I'll know more once they do the PET scan in a couple weeks. It's probably that the insides have been cooked and aren't as flexible as they once were.  Seems logical.

I was told that the affects of radiation last at least a couple weeks so I'm trying to be hopeful. One thing I found that kills constipation is an old laxative remedy.  Castor Oil.  That stuff will have you going in a couple hours.  Best bet is to be near a bathroom at all times for a while.  It beats Senna S but the taste and slimey texture will make you want to throw up. Two tablespoons will do the trick although the results are diarreha but to me it's better than being so plugged up I'm afraid to eat anything.  

 

Thanks for the great info.

Thanks for the great info.  And I'm always inspired by others' activity.  I have mineral oil on hand but not castor.  I may try it.  

Am working on my mindset.  This fatigue has to go away before my surgery in 3 weeks!  

BRHMichigan

danker said:

Brat

Mike should have told you what Brat meant.  It is: bananas,rice,applesauce,and toast.  Good luck to you both!

Thanks!  I am also working

Thanks!  I am also working with a new MD at a vitamin C IV clinic.  He is taking some bloodwork to determine my specific dietary needs after surgery.  It's all so overwhelming most days.

NHMike

BRHMichigan said:

Thanks!  I am also working

Thanks!  I am also working with a new MD at a vitamin C IV clinic.  He is taking some bloodwork to determine my specific dietary needs after surgery.  It's all so overwhelming most days.

That's great stuff. I have a

That's great stuff. I have a todo item to work with a cancer nutritionist but this week just flew by.

Today I started with about 15 minutes working out in my office. I played 55 minutes of tennis including four games (this involved serving which I haven't done in three months and I may be a bit sore in the morning). I stopped at 55 minutes because I had to go back to work. I probably could have gone for another 20 minutes. The most remarkable thing, though, was that I was able to go without the razor blades. I don't know what got fixed but it makes it a lot less painful to go now and it means that I could go back to healthier foods. I'd say that my stamina levels are around 75% but my rear end is still a bit of a mess and I have to be careful with it. So it's still pretty tender with a few holes on the outside but the insides seem to be doing better.

How are you doing on the walking?