BC has changed me

FLwarrior

cycle_babe, Next year...that is what I am trying to convince myself of...Next year... my "gift to myself" will be the exercise that is touted to be the #1 thing to help keep my bc from recurring.  I admit I thought I might need some practice, ahead of time, so I went for a 2 1/2 mile walk at the beach today.  My hips were screaming at me by the end of the walk...WHAT?  I used to do that walk with ease.  Oh, well, at least I got out there and "Practiced"...

CLC

Claire in Seattle...thanks for the suggestions.  The truth is that I am concerned about Lyme.  Ticks are a regular thing around here.  In fact, I pulled one off of myself just one short month ago.  Your post gave the last final nudge I needed to go and get tested.   The results will be back in two weeks.  However, I have suspected Lyme so many times and had the tests always come back negative, so I am not expecting anything there.  Both of my children have had Lyme (my daughter twice).

I don't eat any processed foods, so I am a little wary of energy potions.  I am very careful to eat well an hour before exercise (carbs and protein) and immediately after I am sure to get a lot of potassium.  I also eat a lot of protein.  In fact, I was vegan and decided I wasn't getting enough protein, so I added in nonfat dairy products and even lean turkey to be sure to get enough protein.  Probably even more importantly, I stay very well hydrated (I drink 3-4 liters a day,up to 5 if I am doing a big workout).

Djustme...I can relate to the computer marital issues.  It has come up more than once for us.  The date nights sound wonderful...:)

Merilee and cyclebabe...I swear by my core/ab workout...it really helps me like how I look.  I have managed to keep that going, even as my aerobic activity has waned...  I am thankful for that.

FLWarrior...don't sell yourself short.  You did the walk.  That ain't practice.  That's walking.  When I was first started working out five years ago, a 20 minute walk was the best I could muster.  I just worked up from there.  I decided some time ago that the harder it is to get motivated or to keep going once I have started, the more I deserve credit for having done it.  So...I offer my cheers for your getting out there and getting started!!!

I am thankful to you all for sharing here.  It makes me feel so much less alone.  I hope you all are doing as well as possible.  Thinking of you all...

Claire 

FLwarrior

Thanks Claire!  I will take all the kudos I can get these days! 

tarry

I blogged about an early change:



...the news one has cancer can suddenly put one’s life in a perspective you haven’t been able to imagine.  I had often wished I could follow the advice of imagining what it would be like to know you had only a short time to live.  I just couldn’t really make it real.  But the delay between the news you have breast cancer and the news about how far it has spread was much more than enough:  within about 8 hours I had done a first assessment.  Here is what is most important to me that has been done and the repairs to relationships that have been made, here is what needs to be done, here is what I may have to give up thinking I can ever do. 



Since the dx, I've encountered some huge problems. Among them is my son's mental illness. But I understand my life a lot more, and my actions can be more directed.

Merilee

Tarry- you reminded me of my own life assessment. One thing I did was forgave those who have hurt me. I also went to each of them and told them so. It was very healing for me.

Fl warrior- when I firsts started working out motivation and energy was a big problem. I was able to trick myself by committing to only 5 minutes. I would start knowing I could stop in 5 but almost never did. I learned that starting usually made me feel so good that I would keep going. The other thing I have discovered since going on Als is that keeping up on any kind of movement helps with joint issues. If I miss a day, I can really feel it in my joints. Its like they clog up or something. I am going to try to look up what actually happens when you exercise so that I can understand the mechanics of my body. If I find an easy read I will post it. AND...I am green with envy that you have a beach to walk on.

Merilee

From what I have read so far, exercise helps move Synovial fluid around the joints. Here is a definition of synovial fluid from WebMD:Synovial fluid-a clear thixotropic fluid, the main function of which is to serve as a lubricant in a joint, tendon sheath, or bursa; consists mainly of mucin with some albumin, fat, epithelium, and leukocytes; synovial f. also helps to nourish the avascular articular cartilage.

I will keep looking for more good stuff about this topic- I will also see if I can find any journal articles on Als  in relation to this fluid

Merilee

http://www.ehow.com/how_8342413_improve-synovial-fluid-foods.html

This is an interesting and easy read. They do suggest eating soy to up estrogen which tells me that there is a definite connection between lack of estrogen and this fluid. Of course those of us who are er+ can not do the soy, but they have other foods listed as well to help increase synovial fluid as well as some other tips.

Also there is a delicate balance as it appears too much synovial fluid leads to inflamation.

FLwarrior

Merilee, I like your approach to getting back into working out.  It sounds like it took the overwhelming factor out of it.  Thanks for sharing the info on the synovial fluid.

Everyone, have a nice Sunday!

Claire_in_Seattle

Hi Erin,

Wanted to answer your post yesterday, but was running around doing a ride, then errands, then a party.  Am sidelined today, as seem to have been felled by the bug that is going around.  So ache all over, plus the usual symptoms.  Am downsizing to a walk.

I moved to Seattle a bit under five years ago, and a couple of things stand out about this climate compared to the East:

1. The lack of light in the winter.  Getting outside is no joke.  The sunlight yesterday was glorious.  You can tell Northwest types because they are the ones sitting outside in the sun when it's 40 degrees out, drinking their coffee.  Even if it's gloomy out, I always feel better if I get in some outdoor time.
2. The damp climate.  I wear cashmere year around, often cashmere tanks in the summer.  I have on a turtleneck at the moment, so feel nice and toasty.  You need different clothes than in the East, and you need to dress in layers.
3. I don't think it's an accident that Seattle is a coffee center.  So is Portland.

On the topic of energy gels, they do make honey-based natural ones.  I forget the name.  The thing with cycling is that something like an hour into a good ride, and you have used up your energy stores.  Clif might be worth checking out too.  Their gels are great for energy and electrolyte replacement.  None of this is necessary if doing rides under 20 miles.  But you have to eat something if cycling much more than that.

(Cyclists notably specialize in bakeries and microbreweries.  I haven't forgotten a very wet ride I did about a year ago.  We were fighting for space close to the gas fire at the Red Hook brewery in Woodinville.  Man, was the trip back cold!!)

I am off for a walk in a few.  I can make up next weekend on the cycling, and hopefully, skiing.  Will take some aspirin prior to heading out so I feel half alive.  Hopefully, I will run into the Dickens Carolers at Pike Place Market.  And see other cool stuff.

Plus pick up two more bottles of wine for gifts at the wine bar. - Claire

(Still have Christmas Puddings to steam, but that one will need to wait.)

tarry

Marilee, the ehow article has this liine: "Reduce the amount of dairy products consumed including pasta, white rice and white bread."



I wonder what was meant. Something about refined wheat and grains?

cycle_babe

Tarry, thanks for the info, interesting article.

CLC, I sure hope you are negative for lymes. Like you, I am thankful for this thread. It really helps to have a place to vent and also get great info on just about anything.

Claire in Seattle, I am glad to know that I am not the only one who has packed up and moved across the US.Where did you live back East? Did you hate the West coast when you got here? It has been a rough road for me. My life was awesome until my DH got a job offer which he insisted was too good to turn down. I was diagnosed one week after the contract was signed. I left a job that I loved and it made me feel useful in life. Even though I have DH, I feel so alone here. My family were my rocks and I was used to seeing them often.I do not feel depressed, just angry over having to go through so much without my family. I go to appointments alone. I have been drinking more than I did before BC. DH gets mad about that. I say too bad for him, he would be more loose if he joined me more often. Anyyway, there are days lately where I feel I will never again have the passion to do the things I used to love. I did join a gym and have been going but I am not staying as long as I should. It is not the same as being outdoors. You are right, the air here is dreadful.. I am sure things will get better with time. Thanks for the info on the gels etc - it will be useful if I ever get back to riding more than 20 miles.  Sorry for the rant, ladies. I know I will get a grip on things and will feel better when Spring arrives. Counting down already..only three months and one day....

 

 Oh gotta get past Christmas first

Claire_in_Seattle

I moved here because I loved the culture and cool vibe.  I can't stand hot humid summers so am fine with a bit of low light.  I grew up in Northern Vermont, so get the part about needing to go outdoors.  I was the weird 2 year old begging to go to the woods to "help" her father cut lumber when 10 degrees out.

I also realize that I lived in and around NYC for far too long.  But I can certainly understand if you loved the job you left.  There are other jobs, and some of them are here.  I think you need to figure out something that is fun to do.  (Other than wine, which I also dearly love.)

I don't think the air is "dreadful".  That word describes the BROWN air that often invades NYC.  Much cleaner air here.  But it is humid and damp.  The positive side is the most wonderful winter flowers.  Camelias, primroses, pansies, rosemary bushes, etc.

Off to bed as need to sleep and fight off the creeping crud that I seem to have gotten.  The worst, but hope it will be over soon.

Good luck and figure out something fun.  What about a book club?  That would be a low risk way of meeting people.  I joined two cycling clubs and a church.  Later on, I hung out at the wine bar.  But you have to get out and do stuff.

Meanwhile, enjoy your Christmas. - Claire

Merilee

Tarry, I noticed that statement in the article and thought it odd as well. Maybe a quick google of pasta & synovial fluid. Maybe there is a negative connection? I will try to look at that idea later today when I get some time. I am just so happy that others want to learn along with me. I feel like I have earned another degree since was diagnosed LOL

Hope60

Claire_in_Seattle - I'm so envious! I was in Seattle last September, and fell in love with the place.  The combination of water and mountains is so beautiful.  I'm not a "summer girl" either....NYC in July/August is my idea of hell! I would pick up and move to Seattle in a second...problem is I have an elderly mom who is very dependent on me here in NY.  And, if I'm totally honest, I'm not sure I have the courage to move across the country alone and start over.   I applaud you for doing that,  and hope you enjoy every minute of that lovely Northwest vibe!

anoym

Hello Ladies...I just found this thread and would like to join you. My heart goes out to you all.If I could vent here I think it would help. I got dx back in May2010 DCIS. I had a DM mostly because I had found out that most everywoman in my family had died of BC (i was adopted). As a matter of fact they found the cancer on mamogram on the day I got my genetic testing back (it was negative).After about 6 years of MRI's and mamograms and BX's I knew it was different this time. I went with implants because no one in my area did DIEP (really wish I went that way I hate the silicone implants) On my third post op day my husband got sick. What followed was 9 weeks of hell. I drove him once to the ER day 10 post of for me crying from pain and he left because the curtains were dirty. Anyway...finally after many doctor apointments with me begging for specialists they did an MRI and put him in the hospital, he had MS. My husband worked a lot. So after his treatment. We decided to move to VT. I'm not crazy about it. Feel very isolated and depressed most of the time. I just had my fifth surgery on Dec 1 got my nipples. Now I have no energy. I barely want to leave the house. Oh I forgot to mention I got laid off last year and justed started looking for job. Not a lot here. I had a lot of support at first but I guess people don't care much when you keep having surgery. I am estranged from my sister due to her lack of support of me, my husbnd and my mother who is in a nursing home (long story). So my husband thinks I should be thankful I'm cured because he's not (he hasn't had any more excerbations). I have two wonderful teenage boys and count my blessings that they are such great kids. I know so many have it harder than I, no big finicial worries, but I have no wind left in my sails. I don't really want to be bothereddoing a lot doing anything. 

Hope60

anyom -  So sorry for everything you are going through....and feel free to vent! We all need to do that sometimes, and this is a good place for it.  BC is hard enough to deal with....other life issues only add to it. I don't have any great answers ....just wanted to offer my support.  I wish you the best!

minxie

I think BC has changed me more than anything in my life.

I don't plan for the far off future, just the next few months. Been tempted to cash out my 401K - who knows if I'll make it to retirement? I don't go to the dentist anymore. Who knows if I'll need these teeth, so why suffer?

I don't get bent out of shape about the things that used to set me off. I've often felt like I couldn't relate to most people, but now I just don't care. I'm also less willing to put up with their crap and now I speak my mind.

I find myself thinking about the Big Picture, the hows and why, about humanity, existence. I have given up all belief in God.

I want more for ME. I want and DESERVE happiness and will do what it takes to feel it, whether or not other people agree with my actions.

Best to all of you!

Merilee

There is a serial perpetrator on the loose who is entering the homes of innocent unsuspecting woman. Women in all 50 states have been viciously maimed, poisoned, burned and held captive against their wills.Yet, as a nation we have not heard much media coverage of these hanus events. What's worse is that often victims succumb to this vicious beast multiple times after the initial attack. Once marked, women must live their lives in fear that this predator will return to do it's sadistic  work over and over again. Many women have died from both the poisoning and the burning and sadly some have committed suicide to escape their hideous reality.

Welcome to the world of a breast cancer  patient.

I wrote this to help  readers on my blog understand why many breast cancer patients have PTSD. A lot of light bulbs went on.

FireKracker

Perfectly written Merilee....sure hits home for all of us....We are all in this together no matter what stage or grade.breast cancer is still breast cancer.and once you hear those words and your name in the same sentence you life has changed forever......If it dont kill ya it only makes you stronger....

Claire_in_Seattle

Dear anyom....

Even if you took breast cancer out of the equation, you would be having a rough time.  I am so very sorry about your husband.  Wow.  I think you got the better deal.

Let's look at the positives:

• You will most likely be just fine in the long run.
• You have wonderful teen age boys.  Vermont is a great place to be if you like an outdoor life, so this will give them opportunities they otherwise wouldn't have been given.
• You are OK financially.
• I would add that you have access to good medical care.  Either the Vermont Medical Center or Dartmouth-Hitchcock are first rate.  Even the small hospitals usually have excellent orthopedic care (I wonder why with all the skiing).  Both have close ties with the Boston facilities.

I grew up in Vermont, and it can be isolating if you don't know the lay of the land.  On the other hand, it's possible for people to know far too much about you.  Try going to a public school with fewer than 30 students in your class.

Can you do volunteer work???  I am saying this because you are financially OK.  This will get you out of the house and feeling useful.  There are a myriad of opportunities.

Now that hunting season is over, can you get out walking, hiking, snowshoeing or skiing???  The mountains are beautiful in the winter.   The local shops have all you will need to stay warm and toasty.  Like Seattle, you need to get outdoors as a Northern climate.

Then try out and visit all the cool sites.  The Statehouse is one of them.  They didn't "modernize" until recently so a gem of High Victorian architecture.  The Morgan Horse Farm.  Cabot and other cheese-making outfits.  Woodstock and Bellows Falls...or St J.  Go eat at the New England Culinary Institute in Montpelier for wonderful cheap eats.....great chefs now by the way.  They are linked to the "eat local" movement, so wonderful local eats.

Downtown Burlington is great fun now too.  Drop in for a microbrew.  Get yourself a Harrington's ham.....mmmmmmmm.  Then make pea soup with the bone.  Take baking classes at King Arthur flour.

Finally, buy yourself a pair of real, warm boots.  Absolutely essential for about 7 months of the year.  Something warm and waterproof.  Ask around for advice.

That is how you will meet people, and then appreciate the quirky, fun culture that makes up Vermont. - Claire

Djustme

Yes - life is hard enough all on its own without adding the BC to the equation. I'm sitting here drinking beer (I haven't drank in about 16 years due to taking pain killers for chronic pain).  My boss is making my life a stressful nightmare right now.  I have been trying to convince my boss for a week about the need to fire a co-worker who is behaving inappropriately. Today I didn't hold back.  I gave my boss all the proof she needs and and made it clear I won't work with this person anymore. She is pissed at me that she has to deal with this instead of being pissed with the co-worker who has violated company policy and privacy by sending a memo I sent him on a client file to someone outside of the office. I also NEVER swear, but WTF!  I am waiting for the fallout of my honesty.  I would have just put up with jerks in the past. No more! I want a good working environment. I have 18 years of experience, ten with my current firm. I shouldn't have to deal with a contract worker who refuses to follow my instructions (I am his superviser) and whose actions call for automatic dismissal. I am taking tomorrow off and if he isn't gone when I come back, I am going to make it clear that as far as I am concerned he doesn't exist so she better find another place for him in the office. Life is too short for A-holes.  Ok, enough bitching. 

My son is home for an early Christmas with me (that's why I'm off tomorrow) and he is my absolute favorite person in the whole world.  I just took two pumpkin pies out of the oven, and will start my stuffing and turkey in the morning.  THIS is what life is all about.  Live for these moments of joy! 

Claire_in_Seattle

I once had to remove a hostile temp employee that my male boss was too intimidated by to tangle with.  Not fun, but I did it.

Good luck.  Your boss may think differently once she has had some time to reflect.

Anyway, you have people working for you to reduce, not add to, your workload.  I am assuming that this was not the first display of assholery.

Enjoy the pie!

anoym

Thanks ladies...It does feel better to vent. I know I need to push forward I think being laid up with five surgeries in 18 months has made me lazy and not caring what I get done. Knowing you are not alone really does help. I went to my PS today he really can't wrap his head around that I think the implants are always uncomfortable. I think he must do a lot of breat augmentations and women just love it.  Crazy....

Claire...I'll try some of your suggestions.

Merilee I read how difficult it has been for you. I hope things are looking up. 

minxie-Hope you find happiness.

Thanks for listening.... 

Merilee

Anoym- thanks for the kind words, It has been a rough year but I am looking forward to 2012 being the year that I kick Cancers butt to the curb.

Also I am writing a blog and a book about my journey and how I find my way out of the dark place. It is very healing to get my thoughts out of my head and onto paper and cyberspace. Anyone who wants to write anything that you think would be helpful to my readers can send me your thoughts in a PM.

I think for me the best revenge on the beast will be to turn it around into something that will help others. Just the way my brain works.

Djustme

About my temp employee - yes he has been a pain since he started, it was just the icing on the cake so to speak.

Had a great day with my son. We went Christmas shopping and cooked stuffing and turkey and peanut butter balls.  I am so very thankful for him - that is one think that bc hasn't changed!

I think so many of us have had the same problem of putting everyone else before us.  I say we give ourselves a Christmas present of permission to pace ourselves this Christmas, and to lie down at least once a day whether there is company or not.  You don't have to nap, but I, personally,  need the quiet and my body needs the rest. (I am still only about 7 weeks or so post mx) -  I think this is an important permission to given ourselves forever more.  Our health is important, including our mental health, which includes reducing stress where possible, and resting when necessary.  In the past I have often gone to events out of obligation, even when I wasn't feeling well, and ending up exhausted and often with a migraine.  I think it is time to put ourselves first, and if we are not up to going to an event - don't go - and (somehow) don't let people make you feel guilty about it.  So this will be both my Christmas present to myself, and my new year's resolution  - to put myself first, instead of bearly making the list in the past.

FireKracker

Djustme---what a wonderful present you are gonna give to yourself.and so well deserved.i told my Bs nurse who is soo nice that this is the first time in my life i put myself first.Sure the beast scared the daylights out of me but i did learn what you are talking about.Its gonna be what I want to do.Im gonna take that rest when i fell like it.sometimes i feel like my body doesnt need it cause it is so used to being on the go but its gonna have to learn slowly.This damn beast knocked me down and it takes a lot to do that.Itcaught me soo off guard i screamed at the world.Now im learning to finally release the anger and the stress and think of what i want.Never even gave it a thought before now!!!Im finding a different me quite often....the thing is BC is always changing me!!!!!

Merilee

Granny I am with you. BC took  a lot from me but I am forging in a whole new direction that feels more genuine and more to my liking. Did not like the skull drag onto the new path, but I can see that my life will be more satisfying and I am following my dreams now instead of later.

Momine

Merilee and granny, that is where I am too, and I choose to see it as the upside of cancer. 

Merilee

I do OK until something comes up that scares me then I turn into a quivering angry mess.

I am determined to make something good happen out of this. It is the only way I will be able to wrap my brain around it, being the existentialist that I am.

FireKracker

I too do ok most of the time BUT anything can easily put me in a tailspin.....

I try sooo hard to stay away from the spinning ...some days it works most days it does not.

depends what else is goin on.

still tryin to figure out if i like the new me or not!!!!somedays yes others NO!!!1

damn i sound bipolar...a lot lately.....