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A Rambling Observation

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi everyone,

I am here at home, resting/relaxing, with the Grammy Awards on the TV as background noise while I'm playing around on the computer. Now, you may very well be asking yourself, "So? What does that have to do with cancer support, or anything about cancer, for that matter?"

Well, I thought I'd take the time and write a rambling post about some "observations" I've had this weekend. I have no idea if they are at all related/connected to my cancer journey, yet, I can't help but think there is some sort of connection.

Just a quick summary so we know what we are dealing with here... I was DX 2+ years ago in Dec 2006 with Stage III colon cancer, the tumour having perforated through the wall, an abscess formed around the tumour which was attached to the abdominal wall and bladder, and throw in peritonitis (infection of the abdomen). I had the colon resection, then 12 rounds of 5FU/Leucorvin and 10 rounds of Oxaliplatin. In the middle of that, I had 6 weeks of daily radiation and while doing the radiation, I was on the oral chemo (cebatacine) instead of the 5FU/Leucorvin. In June 2008 I had my right adrenal gland surgically removed (ouch! That was one heck of a painful surgery with intense pain for about 3-4 weeks post-surgery)... no followup of chemo after that surgery. Then about 3 weeks or so ago, I had one tumour ablated from my lung under a general anesthetic.

Ok, all in all, I have had a fair amount of stuff done to me with a fair amount of chemo/toxins thrown into my system... but I think I've come through it all very well. My only long term affects that I can say I honestly notice is the neuropathy in my feet which can spread up my shins, usually when I'm in bed, and a much more intense arthritis in both knees. My left leg is worse than my right leg when it comes to stiffness and pain. I do get the feeling that my legs are the worse off, what with cramps, muscle pain and what I would say is "bone pain" but I'm not really sure because I'm not really sure what bone pain is. I get an incredible aching in my lower back... again, I'm not sure if this is bone pain or weight-related since I certainly can't do the exercise I used to because of the leg pain. My shoulders and upper arms can also end up aching for no apparent reason. Hahaha... now if this were to all happen at once , I think I would put it down to hypochondria , but most of these pains (other than the arthritis in the knees) are all new pains since taking the chemo.

My oncologist has said that it's possible that some of these problems are all chemo-related, but since we are talking over the period of 2+ years, it could be a combination of chemo, age'ing, and very limited degree of exercise. If you think about it, for every year we live, no matter what age we are, we are one year older. If we cut back on our physical activity, plus age a year, there might be aches and pains that come with that... but then throw a regime of chemo/radiation into the mix and who knows what causes what. But there you have it... I do have my various aches and pains and they can strike me at different times.

Ok... so, let's get to the weekend observations. In all honesty, I have kept myself busy even while I was on chemo. I think I have mentioned it in more than a couple of posts about my involvement with the local theatre community...and since being off work, I've become more involved with my theatre activities (I'm a firm believer that, although we must pay attention to our bodies and get plenty of rest and sleep, we still must keep active so that we do not become prisoners of our own making). This weekend, I have been involved with two FULL days of auditions where we are casting two full Broadway musicals for the summer. This weekend meant I had to get up at 6am and be down at the audition hall by 8am to set up our computer setups for the registration process. My day was 6am - 7pm when I got home. Yes, we were fed , but didn't actually have a break... just worked straight through.

I have noticed both days that by the time I would get home, I was physically exhausted and drained. Yesterday, I got home and I was too tired to even think of eating, let alone think about making something. I was so tired I thought I was going to be sick to my stomach, so I had to lie down for a few minutes. Well, that few minutes turned into a 3 hour deep sleep nap. Today, I found myself starting to get tired around 4pm... I ate some protein at that time, which seemed to re-energize me, but when I came home at 7pm, I immediately lay down with my little dog and we had another 2 hour deep sleep nap. Of course, now it's 11pm and I'm wide awake and ready to go for the next 4-5 hours .

In the pre-DX days, I would have been able to do both days with energy to spare and after the auditions were over, we would go out for dinner and yak into the late night hours. I was almost tempted to do that tonight with some of the directorial team and then common sense took over and I made myself come home. I really don't think that if it was just a matter of 2+ years has passed that I would have lost that much energy capacity because I'm 2+ years older. I seriously think that, even though it has been some time since I've been on chemo... the combination of chemo/radiation and surgeries has taken somewhat of a toll on my system. I think it's great that I CAN do two days in a row of long hours that the audition process requires and for that I'm very thankful. But I think I also have to look at this realistically and realize that my body and system has gone through a heck of a journey and even if I never have to have another surgery or anymore chemo, there are some things that have been changed with what I have gone through up until now. I know I still have some lung issues that are going to have to be dealt with at some point...whether it's more lung ablations or whether I will need to have more chemo treatments... and when that time comes, I will have to be patient and let the treatments do what they are meant to do and then give myself permission to accept whatever changes have happened in my body and work my way around them.

The important thing... my body HAS taken a beating and yet I'm still here and able to do the things I love doing. And if it means I'll have to watch I don't use up my energy reservoirs just to prove a point that I can do anything I want, then so be it... do what you enjoy but realize your energy reservoirs may not be quite as big as they once were :)

My .02 of rambling weekend observations :)

Hugggggggs,

Cheryl

tiny one
Posts: 467
Joined: Jan 2009

I stayed very active during my treatments. I think that's why I did so well. All of us that have had treatments and surgeries have went thru alot. It takes a long time for our bodies to heal. Music made me feel good. Also the back rubs I got from my husband helped me relax and heal. Thank God for those. I love working out in my yard and do that as much as possible. I so am wanting to start weight lifting again, just need to get myself in gear. Most important is time with your loved ones. Don't sweat the small stuff.

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Cheryl,
I have almost the exact same aches and pains, including the wicked nueropathy. The Doc said that the Platinum chemo's were the most potent and damaging to the nerves in feet and hands. I also have very little energy at the end of the day; in fact, I can't get through a day without a nap anymore.
Before my dx, I worked 2 jobs, took care of 3 kids and hubby, and kept a house clean and stocked.
Now, I can barely fend off the dust-bunnies without my family there to help. I think the cancer itself and the side-effects of treatment are both to blame for the way we feel. Aging? That couldn't possibly be- we don't have time between treatments and surgery to actually age, do we? LOL!! Maybe they should mix some of that anti-aging lotion in with our I.V. and maybe we'll look and feel better! At least we won't have wrinkles on our bald heads-LOL.
Seriously, though, it does take a lot out of you and you need to rest and baby yourself when you can. You've been through an awful lot and your body has to recover at some point. I tell my family that, since I can't afford a spa day, I take a baby day- I eat dark chocolate, drink espresso truffles from Starbucks and get chick flicks from redbox. It seems to help. You need to do whatever it takes to make yourself feel better, sometimes. You deserve it; you help everyone on this board, you volunteer and you really should just spend some time being nice to yourself!
Much love to you, cheryl!
Holly

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

....you know, you may still be recovering from the RFA.....the old bod needs
more recovery time at our age.....so maybe you will actually regain your
energy level in a little while.

Hugs,
Barbara

ldot123's picture
ldot123
Posts: 276
Joined: Apr 2008

It is difficult coming off chemo, surgery, radiation.. yikes plus if you have not been really exercising over the past two years the yes it does take a while to bounce back albeit a realllly slow bounce. I am still having times of fatigue and it has been almost 2 years since my last chemo. I am trying to get to the gym when I can but wouldn't you know it, first it was a knee injury - then I threw my back out. very frustrating. Anyhoo, hang in there Cheryl. We Canuks are tough.

Lance

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Cheryl,

Our bodies have all been through a lot, for those of us who have been through chemo, radiation, surgeries, etc. I'm 42 years old and I now have a hard time standing up from the floor. I know it's normal for aging, but at 42- come on! When I first put my feet down on the floor in the mornings- that's the worst time for me- my feet and knees kill me! I even had my primary care Dr. a few months back check my blood for the arthritis rheumatoid factor (because my mom has rheumatoid arthritis), but it came back "normal". I definitely feel stiff and sore like an old woman now, wheras I didn't have any of that before starting chemo a year and a half ago. I know all the chemicals and radiation are hard on the entire body- we're basically putting poison into our systems- most chemos don't recognize the difference between healthy cells and cancerous cells, so I guess it only makes sense that our "healthy cells" are going to have problems of some sort now.

You take care- you are an amazing woman!
Lisa

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Cheryl -

When I read your post, what I heard was regret for the losses that accompany the battle to survive. As grateful as I am for the benefits that I have received from treatment, I also struggle in the back of my mind with the losses that have resulted from both my diagnosis and treatment. I was diagnosed last February. My cancer was quite advanced - I had extensive mets to my liver. Fortunately, I responded well to chemo and was able to have liver resection in October. Recently, I have been told that there are a few tiny mets in my lungs. While I understand fully how fortunate I have been so far, I still regret the big scars on my stomach, the physical damage from both the cancer and the treatment, the uncertainty that prevents me from planning too far ahead and from promising myself that I will be there when my children need me and other less important but still significant losses. I don't really know how to deal with the sense of loss. During the past year, and ongoing, I have tried to channel my energies and concerns into staying positive and fighting the cancer. I have a lull in the fight right now though and feel that I need to come to terms with the losses. It is really hard to put a positive spin on it. It is hard to let go of the wish to have things return to what they were before diagnosis.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

In my opinion, some contributors to this thread should do less philosophizing and more exercising.
--Greg

Faith88
Posts: 55
Joined: Sep 2007

Hi Cheryl,
I watched my hubby go through very similar things you are stating, he too, was Stage III colon and has suffered neuropathy and problems with his feet and legs, also the arms and shoulders ache sometimes he says. It's hard for him to get out and even walk although I nag him daily, and he tries. He's also got liver damage from the chemo, hopefully can be arrested with a proper diet. So after a year and a half and still feeling the after effects of the chemo, he's decided to make some changes to his diet --
He's going on a serious eating plan, have you heard of this book,
"Eat Right for Your Blood Type"? He used to be a huge meat (red) eater but is a type A blood (so am I) and that is a NO NO for us, so we are both incorporating the plan to see if it helps us both feel better. It's only been about 3 weeks, and I can say he's really noticed a difference. I think in overall well being, energy, and some weight loss, which he needs. He actually just picked up another book by the same author which goes in further depth with this diet plan. I usually don't jump on too many bandwagons, but this book seems to make sense to me, since everything I found I had trouble digesting were No No foods, that I shouldn't be eating anyway. If you have an open mind, and want to check it out, you can find it on Amazon, or any library or book store.

I think it's important to sort things out, then make changes where you can, and I'm glad you shared your philosophy, I enjoy reading your posts, they are always positive in my opinion.
Take care, be well
\faith88

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Cheryl, You just seem like a ball of energy to me! I bet cancer didn't know what it was coming up against when it decided to visit you. You take care of yourself.

*hugs*
Gail

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I love hearing everyone's responses and how it may strike a familiar note with what they've been through, so thanks all for participating :)

Hehehe... I won't go through and answer every post that was written but will sort of make this a generic response to everyone

Greg... your answer was short and to the point... you obviously believe people responding to this thread are lazy and don't get enough exercise. I'm not sure how you come to that conclusion when you don't know what anyone's physical limitations are and just assume that everyone should get out and exercise. Personally, my favourite form of exercise is walking... I would walk to/from work and then would take the dog for a few miles every day after work. Walking around the block has been a challenge for more than a year now with the pain in my feet (which is like walking on stilts), legs and lower back making it impossible to go more than a block before I'm in agony. There is no way I have lost this ability because I'm 2 years older... this came on with the chemo and is still as painful as it was back when it first hit me. The doctors are trying to find out what damage has been done to cause this, with my next text being a bone scan this Thurs. So, in your opinion does this make me lazy because I happened to mention my opinion about my observations rather than get out and cause more pain by exercising because someone thinks I should be?

Dixichic... hehehe... if I was in my 80s, I would be more inclined to think that I may be expecting too much out of my old bod, but at 54 I guess I'm actually surprised that the body isn't quite as spry as I guess I'm expecting it to be ;) Also, I think it's something I have to keep reminding myself that what has gone into my body in the way of toxins as well as the surgeries and anesthetics and the internal damage that may have been done, I'm going to have to accept and just work around it ;)

Faith88... yes, I have read that book, and even attempted to follow it for awhile (this was some years ago). Alas, it didn't work for me... but then I never give up. There are so many books/diets/lifestyle changes out there that it's a matter of reading and trying them... and finding the one that works for you. The best one that has worked for me has been a low carb/high protein way of eating. I feel fabulous when I'm on it... but I'm a little bit leary of going back full time on it until I can learn to adjust it so it's not hard on the digestive system. Veggies/fibre is still hard on my system if taken too often and of course, the carbs one gets from a low carb diet is all from veggies/fruits. But hey... I'll get it figured out yet :)

Mary... thanks for your observation... it's true, I am high energy which is why it is a huge shock to me when I find out I can only put in a 10-11 hour day and I'm waving my surrender flag ;)

ADKer... I think you have hit the nail on the head. At first, like all of us, I was terrified about death being around the corner. That hit closer to home when I went from a Stage III to a Stage IV (when they found the spread from the colon to the adrenal gland and lungs). Well, I've finally decided that death is just not an option for me right now and that I plan on doing a heck of a lot more things with my life. Call it denial, call it whatever but I don't even think of death as being a possibility in the near future... so now the losses I'm noticing are the smaller things. The not having the energy or pain tolerance to walk for miles, which was something I used to really enjoy doing. Watching someone my age run up the stairs and I'm going up them one at a time. Watching everyone sauntering along, be it at a walk, a saunter or jogging along, and there are days the pain/stiffness is so bad I need the aid of my cane. I am so thankful I have made it through what I have gone through, but I do grieve the fact I'm not physically as capable as everyone I see around me. But I don't let that loss run my life... I choose to do things that don't rely on that ability and still get to enjoy my favourite things in life :)

Hugggggs,

Cheryl

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

Wow, Greg, it seems to me that you could be more supportive and less judgmental, considering the fact that others on this board have been through such difficult treatments that may just have been more debilitating than yours. I can't speak for everyone, but after 4 surgeries and 2 kinds of chemo that my body is just not anywhere near ready for exercise. I can certainly appreciate the pain from neuropathy and multiple surgeries as a debilitating condition. If this board is about support and compassion, you missed the mark by a long-shot.
If I were lucky enough to be as healthy as you are, I would be doing much more; I'm sure that Cheryl would, too. She is a very active and giving person and I can't imagine anyone thinking that she is slacking in the exercise department. It is offensive to read your remarks and I can only say that to be so inconsiderate must be due to your lack of understanding and experience.
I hope that the day comes when you will realize that not everyone who has had cancer has recovered as well as you; some of us will have permanent disabilities from this and yet, we try our best to be positive and supportive of all the others here that face such dire consequences. We certainly didn't ask to get cancer but, we are trying our best to get through this as gracefully as possible. And because some of us are grateful for the mutual support that we find here, we try to help each other to get through the challenges and pain that this disease brings to others.
One more thought: some of us won't even survive this battle. Wouldn't it be better to give people the gift of compassion, rather than the added burden of harsh judgment?
Hollyberry

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

at the risk of being added to the not compassionate list, heheh, I would like
to add that, if the tests prove no serious problems, there are arthritis
exercises and classes that might help and also I was going to aquatic therapy
for a while which was wonderful. When you are in the water, you don't feel
the pull of gravity and moving around is much easier and you can really get a
good work out in water exercise. Exercise, even easy programs, can boost our
energy levels and there are exercises for people with all kinds of problems.
I took my aquatic class at a rehab center here and the cost was reasonable.

Hollyberry, it could be that Greg meant his email to be supportive and
encouraging and not as you think. Sometimes we interpret emails not in the
spirit they were sent because we cannot visually see the person when they
make the statements.

dorookie
Posts: 1736
Joined: Jul 2007

AMEN, to that!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I couldn't have said it better, I took it the same way you did, and found it pretty obnoxious.

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

if I remember Greg has been supportive in emails in the past and I think
we are being too harsh and jumping to conclusions and whatever happen to
giving someone the benefit of the doubt rather than jumping down their
throats.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Dear Cheryl,

I didn't mean to imply you've been lazy, and I don't think I did. It sounds like you're a worker with a very full and active life. But that doesn't mean that you're getting enough exercise of the right kinds, including aerobics. People can have work that requires difficult physical labor for decades and still have their health deteriorate as they age, because they haven't been doing the right kinds of exercise. I watched my mother's health go in two years, despite her active life and very healthy eating habits -- she gardened and did yard work, and walked, but she never ran, or cycled, or swam. So I'd just like to remind you that however excellent your reasons for not exercising, those reasons will not preserve your health. It's not a moral issue. Try to find a way.

Greg

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Well, I'm certainly glad you aren't implying that the folk responding to this thread should do less talking and more exercise... which is what your first post did indicate. What I didn't pick up on was that you weren't talking about myself AND the people who were participating in this topic... you were actually directing your one line post at myself.

That's ok... it's not like I'm not used to people telling me what to do, what to think, how to live my life and even down to what I should believe in... but I can tune out unsolicited advice because that is all it is... background noise. I'm not sure why I'm such a magnet for folk who don't know me, yet seem to think they know what is best for me ;) Now that is not to say I don't ask for and even listen seriously to advice from people who have earned my respect... and right now, I have a terrific team of doctors who I highly respect. If I told them right now that I was going to hop on a bike and bike around the city... or jog/run around the seawall, they would more than likely lock me away for having gone over the deep end.

I think if you re-read my babbling post, I stated I was reporting on observations that I NOTICED this weekend. Nowhere in the post did I say, "Help! I need advice on what to do because I have never heard of this word 'exercise' before! What is it???" Yet somehow you read into it that I was in need of your one line of advice. Gee, thanks for that... and I'm sure when/if we get the pain under control and I report back that I am now excited because I am actually able to start up an exercise regime of some sort in my life, this will please you to no end that I have taken your advice.

Yes, I did think your post was offensive but did wait until you explained it. Perhaps if you had taken the time to clarify in the post like you did above as to why you feel the way you do, I would not have thought the post offensive at all. I have absolutely no problem with people having opinions... we all have them and thank goodness they are all different (what a boring world this would be if we all thought the same thing)... but in this medium of the written word, sometimes it does take a little brain exercise to make sure the words you do type don't offend or hurt people that may not have the same opinions as you do.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Well, I'm certainly glad you aren't implying that the folk responding to this thread should do less talking and more exercise... which is what your first post did indicate. What I didn't pick up on was that you weren't talking about myself AND the people who were participating in this topic... you were actually directing your one line post at myself.

That's ok... it's not like I'm not used to people telling me what to do, what to think, how to live my life and even down to what I should believe in... but I can tune out unsolicited advice because that is all it is... background noise. I'm not sure why I'm such a magnet for folk who don't know me, yet seem to think they know what is best for me ;) Now that is not to say I don't ask for and even listen seriously to advice from people who have earned my respect... and right now, I have a terrific team of doctors who I highly respect. If I told them right now that I was going to hop on a bike and bike around the city... or jog/run around the seawall, they would more than likely lock me away for having gone over the deep end.

I think if you re-read my babbling post, I stated I was reporting on observations that I NOTICED this weekend. Nowhere in the post did I say, "Help! I need advice on what to do because I have never heard of this word 'exercise' before! What is it???" Yet somehow you read into it that I was in need of your one line of advice. Gee, thanks for that... and I'm sure when/if we get the pain under control and I report back that I am now excited because I am actually able to start up an exercise regime of some sort in my life, this will please you to no end that I have taken your advice.

Yes, I did think your post was offensive but did wait until you explained it. Perhaps if you had taken the time to clarify in the post like you did above as to why you feel the way you do, I would not have thought the post offensive at all. I have absolutely no problem with people having opinions... we all have them and thank goodness they are all different (what a boring world this would be if we all thought the same thing)... but in this medium of the written word, sometimes it does take a little brain exercise to make sure the words you do type don't offend or hurt people that may not have the same opinions as you do.

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Cheryl -

I am glad that I wasn't too far out there with my response. I thought that Greg was talking to me and wondered if I should keep my concerns to myself. I have focused my efforts since diagnosis on being positive and doing whatever I can to win this battle. I could count on one hand the number of times that I have complained. However, there are 2 aspects of my pre-diagnosis life that I would change if I could - constantly keeping my nose to the grindstone without complaints, regardless of the toll on me (mainly stress) and inadequate exercise. I actually don't mind being told to exercise but I am fortunate in that the cancer treatment has not impaired my ability to do that, so far, and that has been an easy change in my life. Vocalizing deep seated concerns is not any easier, so I am glad that it was an appropriate response and struck a chord with you. Exercise is great but there are some concerns that need to be verbalized, not ignored.

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