BC has changed me

DivineMrsM

I was determined bc wasn't going to change me.  But it did.  I was deeply appreciative of my life prior to bc. I didn't need it to help me get my life in order or rearrange my priorities.  My parents passed away in '97 ad '98, so I was aware of how quickly time passes.  Yeah, ramp that up even more with a stage iv dx. 

I feel wounded.  Like a soldier.  I am not as bold as I used to be. I have more tolerance for some things, less tolerance for others.

CLC

I had reprioritized everything before.  I'd faced lung problems-chronic and progressive.  I'd been told the problems were permanent and would worsen.  I reacted badly to the medication (though the doctors insisted that my symptoms were not side effects).  At the time, my children were 2 and 6.  And I feared leaving them motherless.  I took myself off the medication, became nearly vegan, lost weight (for the first time, slowly, sensibly and permanently), began intensive exercise, brought my cholesterol down from 230 to 130.  My lung disease DISAPPEARED.  (Boy, was the pulmonologist surprised).  I had decided that in order to be a good mother, I had to take care of myself first and foremost.  Made time for myself. 

I learned to tell my husband what I needed, I strengthened my friendship with my best friend.  I spent more and better time with my children.  I thought I had everything the way I wanted it.

Then bc came.  I took time to sort out my feelings, made my decisions, relied on others sensibly, processed carefully how it all impacted each of the people in my life.  Felt good about it all--my strength, my support network, my children's place in it all.  I could do this.

I had my surgery, recovered well.  And then it was time to go back to work.  And my emotions came streaming out of my every pore.  I don't want to teach in public school where the world seems to just want to undo every good thing my students and I try to accomplish.  I don't want to accept my husbands borderline depression.  I don't want to be perfect at everything and carry burdens that I have carried.   And I am stunned because I so carefully made each of the choices along the way.  I feel like a spoiled child for even questioning it all...because, really, I have it so  good.  But it just doesn't seem good enough right now.  And I can't even just force myself to face the reality of just how good it actually is...a secure job, with excellent benefits, summers and vacations to spend with my children, a husband who has supported me and held me through the tears to the best of his ability, a best friend who would walk to the ends of the world for me.

And I find myself lost...just what the h*!! do I  want, anyway????

Thanks, all, for listening.

Merilee

Ladies, its PTSD. I have it , I hate it, but if you google the criteria I promise you that you will find the reading interesting and very familiar. Therapy is helping me, maybe it can help you too.

Having a place to be heard is a big part of therapy. This thread is excellent. Even though I would not wish it on anyone, it does help to know that there are others who get it.

Hope60

DivineMrsM - So sorry to hear what you have been through and are still going through. No wonder you feel like a soldier.  Hugs to you.

CLC - I hear you.  I know there are others who have it worse than I do, and I often find myself feeling guilty about feeling miserable.....which only makes things worse.  I've decided to try to just accept whatever I'm feeling at any given time.

Merilee - I also think it's PTSD.  But the therapist I've been seeing since my dx seems to disagree.  Maybe I don't have full blown PTSD in the clinical sense, but I sure do have some of the symptoms.

 It's great to find others who understand.

CLC

Merilee...to be frank, I winced when I saw your "ptsd" assessment.  No...not me...that is too extreme for what I am feeling...  But I gave it some thought.  I think that my feelings right now are nothing compared to my clinical depression 20 years ago...  but that is a question of degree.  The truth is that what I am experiencing is in line with some of the symptoms of ptsd, but not to a degree that makes it clear.  So, maybe, along with Hope60, it is not fully loaded, back from war kind of ptsd.  But, you are right, that it might be helpful to think about it in those terms.

I am now in couples counseling with my husband and have been considering making some appointments solo.  But, in truth, I think it might simply be time to make some more external changes in my life, too.

So...thank you for your post...you have made me think, if nothing else...  And that is usually a good thing...:)

Claire

mammalou

Omg ladies, it is so nice to hear my feelings echoed. How do we get the life that relieves all these questions??

Claire_in_Seattle

Hi Erin,

I am so sorry, and trying to think of things I can say that might help.  One thing I did differently was make sure I exercised, no matter how much I was dragging.  This was under the theory that I might as well be exercised and dragging as opposed to just dragging.  I always felt better when I did my walks.

I got the full deal: surgery, chemo (SIX each of DD AC + T with Neulasta), and radiation.  I think it made a major difference that I was able to do a lumpectomy, and that I was extremely fit going in.

That said, it was six months after radiation that I noticed that I was a lot stronger cycling.  Both my muscles, and also my lung power.  I was cycling the whole time, but suddenly I hit a major  milestone.  The next one was about six months later, or roughly a year from the end of active treatment.  That is when I really felt I had my groove back.

I remember back 16 years ago when I started cycling again.  I could barely do nine miles, and had to stop and rest.  I didn't want to go there again, and I didn't.  The learning from that time is that shortly later, I was able to do the nine miles easily, and build from there.  So you do build cardio and muscle strength.

I am stronger now than prior to diagnosis, or was about three months ago.  I do find I am slower when the temps are freezing and it's twilight at noon.  I also don't want to wipe out again, or at least not until my ankle heals.

I would suspect that you have much weaker muscles now, and reduced cardio capacity.  You can rebuild both.  But you have to go out and just do it.  You will get stronger.....promise.

Happy cycling!!!  At least you won't have frostbite which I am still feeling from Saturday's ride.  Stupidly, I didn't use my skiing gloves. - Claire

CLC

Erin...I whole-heartedly agree about the exercise with Claire in Seattle...  Just keep doing what you can.  It can get very discouraging, but then it is all the more reason to be extremely proud of just getting out there and doing it.  That in itself is worth many pats on the back.  I, too, remember a time of building up strength.  I was 191 pounds, suffering chronic lung disease and had two young children to care for.  I'd never exercised regularly and with intensity until about 5 years ago.  Then I built up slowly to the point when, last year, I went from never having run ever, anywhere to adding two minutes of running within a walk, to 5 minutes, to 20...to 70.  And that was just after my first breast excision. 

There is no doubt.  If you keep at it, you will gain strength, endurance and stamina.  I am trying to remind myself now that I have to compare myself to myself yesterday, not myself just before surgery.  (It helps that another woman on another thread reminded me of just that today, on another thread...)

FireKracker

Merilee---you are 100% right on sista.....maybe not all of us have it but i know that i did and still do.I was told last yr.i had it and im workin on it.....i always exercised.danced competition for 30 yrs.im small but i was strong.when the beast came it knocked me down....1 1/2 yrs. later im still getting up...very slowly....my biggest problem is the anger....its like im stuck in gear.i think if i can get a grasp on that i can and will find the new me.i sure hope so.

Merilee

Me too GD

I want to get to a place where I am not afraid. Keep having stuff come up that brings it all back.

FireKracker

yesterday i had a red line and a itchy spot under my breast....everything came rushing back....i put emu oil on it and of course today its fine.will i ever stop thinkin ITS BACK??

Merilee

Yesterday I went to the doc and pointed out a small 1cm red dry patch. I ended up getting a biopsy and she said it might be skin cancer from radiation. How do I quit stressing when things keep happening? Waiting for results is very nerve racking for me

UG

FireKracker

Oh Merilee-im sooo sorry.ya know so well what to do.its hard but your tuff.

we got your back sista.

damn bc.damn rads.there is no stoppin that beast.

maybe this is the best time to ask the sistas once again to please check out the thread that you started LETS DRAFT A LETTER TO WASHINGTON....

We want a cure.we only need a letter.please.if we help just one sista at a time we are making progress.and what about our children and grandchildren?

I posted this on a few threads and was told it did not belong there.well it belongs right here.

WE ALL WANT AND NEED A CURE.WE SHOULD BE ALL ON THE SAME PAGE HERE!!!!

Merilee-ill be prayin for ya.please keep us posted.We care.huggggs K

CLC

Merilee...I am so sorry to hear about the skin issue.  I hope it finds quick, easy resolution...Claire

Hope60

Merilee - I'm so sorry that you have yet another worry, after everything you've already been through. I don't know for sure, but I've heard that skin cancer from radiation is pretty rare.  I also had a scare after my bc...a nodule on my thyroid gland that had to be biopsied.  I was terrified, and positive that I had thyroid cancer, but fortunately it turned out to be benign.  After BC, it's hard to believe we will ever get good news, but very often we do.  I hope that will be the case for you!

Djustme

Two years ago, my boss agreed that I could change to a four day work week when I turned 50 (that will be this Feb).  Since the mx Nov 1st I want that more than ever. Trouble is, now my boss in on a big re-organization kick getting set up so that she can retire with little notice whenever she decides it's time.  She wants me to take on more, not less.  I too need to stay for the insurance coverage. Besides which I would never find another job in this small town that I could afford to take.  Besides the bc I have chronic pain from a bad accident 16 years ago and sometimes it's bad enough that I need to use a walker. I also can't see in the dark so I'm a prisoner of my home through the winter evenings.  I need to find the time to do things for me. Hopefully I can at least pursuade my boss to let me reduce my hours enough to allow me to attend a couple of exercise classes per week.  You girls are right - exercise has always been a mood elevator (even though I can't do anything like you guys do!) I used to do yoga and low impact aerobics.  In fact - I think I will go online right now and see what I can find!!! Then I can talk to my boss about something that might work.

Hope60

One of the ways BC has changed me -- after chemo & rads,  I've never gotten back to my old energy level.  At the same time, I have less interest in working and want more time for exercise, etc.   I'm stuck in the job for the health insurance, but I feel like I have no life.....I go to work, come home, go to sleep again. Not much time or energy left over for other things.  My company allows people to work part time ... I proposed this to my boss but she said  no.  It also allows employees to work from their home computer one day a week, but again my boss said no.  Here's what really gets me ........every October, the company sells cutsie pink stuff and makes a lot of noise about supporting BC funding.  Makes me sick.

FLwarrior

Merilee, sorry to hear you have yet another thing to be worried about.  When do you get the results back from the bx?  Really hoping that you get great news and hear that it is nothing!!!!

CLC

Djustme...I hope you are finding just the exercise you want!  And, I hope you manage to work things out at work:)  Good luck!

Hope60...I am finding the energy level thing to be a challenge, too...but I am only 10 weeks post op with no rads...so I am still sticking with...it will get better over time.  I am sorry that you are not regaining the energy you had before...and I hope, that with time, you find your experience to be more like Claire in Seattle's. 

Everyone...thanks for sharing here.  It is reassuring, if not restoring, to hear that we are all experiencing some of the same frustrations.

FLwarrior

Hope60, I don't have my energy or motivation level back yet either.  I sleep a LOT!  I am trying to find work and so afraid that when I do get a job that I won't be able to keep up.  It is scary. I need to work full-time so that I can get insurance again.  I imagine that it will be like you described. Wake-up, work, sleep...repeat, which translates into no QOL!  My OT told me "You have to have JOY!  You need to do things that bring you JOY!  You need to plan things to look forward to!"  And I know she is exactly right!  Still workin' on getting the concept implemented.

cycle_babe

Merilee, I have said a prayer that you get benign results and find that you have a rash. Period. I hope you hear soon.

Claire_in_Seattle, thanks for the suggestions. I do feel that my muscles have gone soft and that my stamina is very lacking. I thought that the hardest part of getting back in shape would be starting. But I have began to cycle and I just poop out before I make just five miles. I go out the next evening and try it again and the same thing, I want to turn around after just a mile. I hate it. I have even tried just walking but the same thing happens, I just want to sit down or go to sleep and make everything bad go away. I loved running before BC. I can not even attempt that, my breasts are too sore.  How did you hurt your ankle?

Fl Warrier and Hope, I am glad to know that I am not alone with lacking energy. There is power in numbers, I am grateful that you ladies shared your issues and hope you too find a way to get moving and stay moving. If you girls find the secret, let me know.

CLC, your story is very inspiring. Thank you for sharing that. You have given me a glimpse of hope!

I want to wish all of you awesome ladies a great holiday season. I am sitting here counting my blessings and one is BCO. I thank you all for being here - of course I wish none of you were here either . 

Blessings to each of you ladies. 

Merilee

Thanks for the support ladies. I am once again feeling a bit deflated. I am supposed to get my results in a week. That will be Wednesday.

JustmeD-If you google exercise TV you will find a site that allowes you to click on free work outs. I like the incredible abs one. It is only 20 minutes and I have gotten rid of my estrogen nest (belly) by using it. I could not do all the moves at first so I just improvised a bit.

cyclebabe- I agree, this site is for sure a blessing

Claire_in_Seattle

Cycle-babe........  Are you eating enough protein???  You still need it, or at least I did for at least a year past treatment.  You need it to rebuild, and you need it because it helps with energy reserves.

The other thing worth trying is energy gel.  I still find that I need GU gel for long rides.  Well not need, but I finish with a lot more enthusiasm.

I have backed off eating as much protein in the AM, but a year ago, I made sure I ate something like 18g most days.  It made a major difference while I rebuilt my energy reserves.

I may need more protein for the rest of my life.  Not a bad thing, as I would rather eat a larger steak or chop, or have seconds on bean soup.  (I know that we have limiting portions hammered into us, but we need to think about rebuilding and doing what it takes to stay strong.)

Anyway, might be worth considering.  Good luck.  You will feel better and break through that wall.    You really will. - Claire

Claire_in_Seattle

Merilee......congrats on the abs.  Reminder that those guys are sneaky.  You will notice that I do weights/crunches each weekday.  There is a reason for this.

I use an exercise ball.  Then weights for terrific sculpted square shoulders.  That really makes a difference in how I look and feel.  Even if beyond boring.

My female oncologist took one look at me and said she could benefit from the same, and she is 20 years younger than I am. - Claire

Hope60

CLC - You are only 10 weeks out from surgery.  Be patient....I'm sure you will get up to speed soon.

FLwarrior - I know, that pesky matter of insurance....if only we lived in Europe, we wouldn't be worrying about it on top of  everything else.  But I don't think you should anticipate problems when you go back to work.  You may have a much better experience than mine. Work is a good distraction from thinking about BC, and I think I'd be doing better if I actually liked my job.  Loved your comment about JOY --need to think about how I can do that!

 Claire - your posts are inspiring me to get off my butt and back into the exercise groove. I fell off that wagon during treatment and haven't been able to get myself back on....apart from walking as much as I can.  Maybe I'll actually get to the gym this weekend!

CLC

Hope60...I have this urge to say "you go girl!"  though it is not my style at all!!  Here's to a return to the gym (lifts glass of healthy juice in a toast)!!  and thanks for the encouragement.   It has been tough, because the last two weeks have left me with less energy, not more and I am fighting feeling discouraged.  My last few runs have left my legs feeling really lousy.  But I just keep going out there!  And I will just keep going out there! 

Claire_in_Seattle

Hi Claire.....

It's also midwinter, and it's much darker here in Seattle unless the sun is shining brightly.  More like twilight.  I am dragging today as have some cold thingy.  I have dinner guests coming so drinking major caffiene.  (A Seattle cure for most things.)

Energy potions are helpful when dragging.  Take it from someone who REALLY knows.

They make hills smaller, and halve distances.  I am serious about protein too.  Make sure you are getting enough.  I was eating almost 80g during active treatment.

Watch out for ticks too.  I have had Lyme disease and it is no fun.  I lived in the tick capital of the world for a number of years.  And they are out this time of year too. - Claire

Djustme

wow - we have some energetic ladies online! even though you gals are complaining of not having your old amount of energy, it sounds like you normally set the bar pretty high before bc.  Stop beating yourself up about it. 

I'm looking at doing an exercise class in the warm therapy pool at our local rec centre with my mom. It's geared for people with mobility issues like arthritis (which mom and I have - as well as my chronic back pain).  I'm hoping it is one of those things that I will be able to look forward to.  I will be doing something good for myself and spending time with my mom who is turning 75 soon (and moving slower every day). I also booked a special night for my husband and I for the end of January - a couples massage and an overnight stay at a hotel. We can't afford a vacation away, but it's time together without his computer (he is on the computer all evening, every evening -it's one of our major marital issues).  My goal is to try to have some kind of date night at least once a month, even if it's just a movie or dinner.

I have worked part time for the last two weeks - I find that after about 3 or 4 hours of work, my mind kind of shuts down due to lack of energy.  But, I'm only 7 weeks post op - so hopefully time will help. Working does distract you, but it is hard to have patience for petty office politics.  One guy I supervise I would have fired about four times already, lol.

orangemat

Just found this thread. Thank you CLC for addressing the points here. Actually, we have a very similar diagnosis, though I did the reconstruction, but still, I know how you feel with the "ok, so what NOW??"

Nothing in particular to add at the moment, other than to add my solidarity and offer hugs to all.

cycle_babe

Merilee, great info on working the abs. I have saved this info for when it is time for me. I will be following you and waiting for an update once you get your results. I am praying for good news for you.

Claire in Seatlle, what is this energy gel you are referring to? I do get plenty of protein already and it does not seem to help much. I always feel so groggy and tired. I am not sure if it is from going through the bmx or if it is a form of depression. You referred to it being dark in Seattle, I feel it is also very gloomy here in Portland. I have been on the west coast for less than six months and I have been feeling so down without my family and friends from back East to support me. I think I should just pack up my bike for the winter and pray that I have my old energy levels back when Spring comes.  Thank you for your info, you are very kind to share your expertise with little old me. 

Djustme,  thanks for the reminder that we have extremely high expections from ourselves. I think that is part of my problem. I seem to think that I should be unchanged despite going through surgery and taking drugs that want to make me fat and depressed. I shall not let the BC run my life.

To the rest of you ladies, I hope you are having a pleasant weekend.As for working out, there is always next year!!

Hugs to all..

Erin