not back to "normal"

PinkGirl · 08-15-2007, 11:27 AM

I am trying to figure out why I don't feel so great most days. My main
problems are fatigue, pain, and being fat. I take Celexa
and Arimidex which can both cause fatigue; the pain, I hope, is from the
Arimidex; and I originally blamed the weight gain on the Decadron and the
Herceptin, but I have been off treatments since Jan./07, so now I am
thinking it is because of menopause. I eat right almost all of the time. I do "fall off the wagon" sometimes and get into some chocolate, ice cream,
cookies etc., but most of the time I eat good food. I am too tired to exercise and everything hurts afterwards. I am amazed at the women who say they exercised and even jogged during chemo. I could barely get out of bed.

Other than worrying and being scared about having a recurrence, the
weight gain (40 lbs.) is the thing that upsets me the most. It sure is
stubborn weight. It doesn't want to go away.

My last blood work was okay but I was at the low end of normal for my thyroid, ANC, and iron. I feel bad complaining about weight when so many of you are dealing with mets. You guys are so strong and positive and truly inspirational.

Gerri · 08-15-2007, 01:50 PM

PinkGirl,

First of all, I read that you need to give yourself the same amount of time you were in treatment to recover from it - for me that was 1 1/4 years. I have to remind myself of this when I start wondering when I will be "normal" again and get impatient with how long it is taking. I doubt that I will ever be the same as I was before bc, but l realize that I have to accept my "new normal". I stopped Herceptin in March of this year and I am still dealing with many of the side effects. Some have gone away (the drippy nose, my eyelashes are back in full force - YAY!, the constant chills are almost gone) but I still have swelling in my ankles and feet, and yes, the dreaded weight that will not budge. However, my legs no longer feel as if they weigh a ton each and I am starting to get my energy back. I can actually stay awake past 8:30 now! Even though I was able to work full time during my entire treatment I did not have the energy to exercise - I finally feel that I will be able to start a walking routine.

So, give yourself time, continue to eat well, and hopefully soon you will start to feel like the old you in a whole new way.

PinkGirl · 08-15-2007, 03:13 PM

Thanks Gerri,
I go back and forth with this -- some days I am very patient with myself and other days I get very frustrated with not having any energy and being FAT. Three days after my last Herceptin treatment (Jan./07) I decided that I'd had enough of being the cancer patient and I was going to just get back to "normal". I ended up tripping "up" the basement stairs, splitting my lip open, 2 black eyes, and a broken nose. So.....that doesn't work!!! It seems like a lot of the women who post in this forum are very active and have more energy than I have. I guess we're all different.
Thanks for your advice.

LOPSIDED · 08-15-2007, 03:18 PM

i Am Overweight, Felt Too Tired To Exercise And Had Joint Pain. This Is What Made A Major Improvement For Me. I Bought A "total Gym". It Is A Wonderful Piece Of Exercise Equipment. I Am In The Comfort Of My Home, I Can Do The Simple Exercises To Help My Arms & Legs. I Swear After Using It 1 Time I Felt Better. I Feel Totally Different. I Am Not Taking Hydrocodone For Pain Anymore. I Have Only Lost A Little Weight But I Am Working On It And Enjoy Working Out. I Use To Go To The Walking Park, But Could Never Stick To It. I Work Out Twice A Day. My Back, Arms & Legs All Feel Better. You Can Start Out Slow And Gradually Work Up To Any Level.

hope You Feel Better Soon.

Shad · 08-15-2007, 05:32 PM

Hi Lopsided,
I am inspired by your experience with your exercise regimen. Thanks for sharing you experiences! I, too, have been trying to improve my health with exercise (walking, riding horses). I would live to drop a few pounds, but all in all, am pleased with my feeling of well being with increased exercise. You sound like a tough lady - hang in there!

rentrac · 08-15-2007, 05:35 PM

Dear Pink,
After almost 4 years of trying out way too many kinds of therapies, I found that it does take a while to recover from all the tortures the poor bod has gone through. When I was completely wiped out, I started by taking a very slow walk, a very short way every other day. From there I slowly increased pace, length and frequency. When I could finally make it 1/2 mile every day without turing purple from exertion, I switched to the pool... just walking slowly from one end to the other.

I've also had to work off decadron weight that I scooped up in April. Decadron can reduce muscle strength in the upper arms and the thighs - which it sure did to me, so I asked my doc for physical therapy. They've worked my butt... not quite off (which I'd be VERY pleased to achieve), but certainly have improved my strength and stamina in just a few weeks. I'm beginning to believe that there is a remote possiblity that I can drop even more of the amazing weight cancer treatment has given me. I'd just love to recognize myself in the mirror again! Hang in there.
Rentrac

Shad · 08-15-2007, 05:57 PM

Dear Rentrac
Good for you for embracing the power of walking in improving our sence of well-being. I admire your optimism and am encouraged by your strength and courage. As is evidenced by my pictures below, never underestimate the contribution of a corgi dog in assisting us in our recovery and empowerment during walking exercise!

Shad

rentrac · 08-15-2007, 06:14 PM

Dear Shad,
Thanks! You just gave me a boost that made my day. I'm intrigued by your having had free DIEP- I'm seriously considering just that, if my mets will behave long enough that I can squeeze it in! I'm really tired of having shifted from a B/B to a B/-A then to a C/-A (thank you chemo) and then to a D/-A because of Decadron!! Egad! Stretch marks and talk about an uneven load! I'd rather be equally flat chested than this! But the idea of a free tummy tuck (again, thank you dear decadron for THAT extra baggage as well) and not having to wear a $%^&* prosthesis to fit my clothes is VERY enticing. Would love to know the details.
Warm thoughts,
Rentrac

Becky · 08-15-2007, 06:29 PM

I used to always run but during chemo, that was out of the question. I didn't start Herceptin until 2 months after rads but I started walking right after rads. I couldn't start to run again because I had absolutely no feeling in my legs because of Taxol and the risk of hurting yourself running when you can't feel your legs or feet is a very real concern.

I waited until after rads because my radiation oncologist said not to gain or lose weight during rads. The reason is that the boobs are the first place a woman gains or loses and they have you all computerized with size etc. The evening after my last rad, I started walking. I didn't start running until this past March - 2 1/2 years after diagnosis. I still have a couple of numb toes but it took me that long to know I wouldn't break a bone if I ran and that I could control foot placement. I was, however, walking 30-35 miles per week. Now I run almost that much (as you have to replace walking with running slowly so you don't blow out your knees or heels).

Anyway - start slow. It's really getting to be walking (or running) season (Fall and Spring are the BEST). Go 5-10 minutes out and then back. Work that up to 5X per week. After you are comfortable, make the walks longer. Depending on what kind of person you are - enjoy the alone time OR do it with a buddy/hubby etc.

It is very peaceful. I work out the problems of the whole world then - at least the problems of my world. I daydream and fantasize then too (secrets be told). I think it helps the mind even more than the body.

Most of all, give yourself time. It is a physical and emotional burden to have cancer and go through extensive treatment. Be kind to yourself as you are perfect no matter what you think. No one can you more perfectly than you.

Hugs to you

PinkGirl · 08-15-2007, 07:13 PM

Thank you to everyone who replied to my "complaining" post. I always thought that people lost weight while on chemo. I thought I was the only one who gained. I will definitely take everyone's advice and start to slowly exercise. Thanx.

Believe51 · 08-16-2007, 01:02 PM

We are here unconditionally for everyone and we want honesty...so please Sweetie never apologize because that is what we are here for. I like to get to follow everyone's journey, it makes me feel so close to everybody and allows me to learn. I am so sorry we have to meet here but thank God we have a place to call home.

We welcome you with open arms and remember this: Your pain and problems are still your pain and problems, whether big or small we cannot compare them to anyone else's. So you feel fatigued and fat....you have expressed that....we have heard it....and we always will!!

Always feel that we are all here for you, 'cause we are and feel confident we shall always will be!!>>Believe51

Vanessa · 08-16-2007, 09:10 PM

I gained 40 lbs during chemo, also. I am very sensitive to the decadron.
After I stopped chemo the first time (I was still on Herceptin) I regained some energy and started walking. My appetite also reduced after I stopped taking the decadron. I probably lost about 15 lbs, but then had to start chemo again and I have gained the 15 lbs back. I hope you regain your energy soon. I had to start out small with the exercise, but I definately don't feel like walking during chemo. I do not take Arimidex or Celexa, but I do take Lexapro as an antidepressant.

Sheila · 08-17-2007, 08:37 AM

PinkGirl
I too have added some extra pounds, first the Herceptin and now the Decadron....I have started walking, like Becky said, taking it slow at first and working up...don't think I'll lose any until I am done with chemo, but I do feel better with the walking. One hurdle at a time for me!

AlaskaAngel · 08-18-2007, 12:32 PM

PinkGirl,

I was very surprised at how long it took after treatment for me to get anywhere with diet and exercise. I got very frustrated by all the menopause discussion by and for women who haven't had cancer treatment, because it just isn't relevant to our situation. It was over 2 years before I was able to really start making much progress, and even then it has been very slow. But I think it would have been worse if I had given up altogether. I told myself that the chance for return of cancer is less and less with each pound that goes, because then there is less aromatase left.

At one point I pushed too hard and because of all the extra weight, my knees swelled up from simply going too far too soon -- and they stayed that way for a full month. So going slow is important. I couldn't jump rope at all in the beginning because I kept tripping so much. And jumping rope had always been one way I worked out before treatment. I still jump much slower than I used to, but I don't trip as often.

Changing my diet helped me the most, I think, because if I hadn't thrown out the sugar I think I'd have continued to gain even with all the exercise.

It isn't fair to us.

AlaskaAngel