Sept 2012 chemo

Thanks everyone for your recliner experiences!!!  I went for the bigger one.  Hopefully it will get here in time.  I am trying to move into hyper planning mode to ward off any anxiety.  So far so good.  Only bad thing is I woke up this morning with hardly any voice and a sore throat.  Figures a week before surgery.  Didn't that happen to you too Amy???  Trying to take lots of vitamin C.

Terri:  It must be so hard to wait for hair.  I know that when I started Taxotere, I was scared about the hairloss thing and the 6%.  My oncologist said that he hadn't seen the 6 percent in his practice, and actually told me he never saw anyone who didn't grow back any hair.  That made me feel somewhat better - but I remember still being doubtful.  I think the biotin and b vitamins are a good idea.  Lots of people also use castor oil on their scalp to help promote hair growth.  I am using ovation- which I think is helping, but I really don't know for sure.  It is expensive, but since I have so little hair - it will last a long time. Good luck talking to your doctor about it.  If you can find ways to help relieve the stress of waiting... I think that might be important.   Saying a little prayer that you will start sprouting some hair super soon.  And just remember how much you have coped with so far!  You are strong beyond your wildest dreams - and we are here to support you whatever happens.

Damiana:  My hairgrowth is coming in all weird too.  It is super light at the temples.  I am worried about some male pattern baldness... but hopefully, it will start getting thicker soon.  Love your idea of the unibra!  Maybe you should market it!!!

Foreverchanged:  So glad your ears popped and you are hearing better!!!  So scary all of the things that we worry might be chemo related changes that could last forever!  Glad this was not one of them.  Hope you are feeling better.

Cindi:  So nice to hear from you!  I play games too.  Sudoku is my favorite... followed by solitaire.  My kids got this game where you work in a vet clinic taking care of animals.  You have to diagnose animals, clean cages, feed them, give water, brush, pet and play with them and finally adopt them out.  There is a timer running and you have to do everything before closing time.  So much to do- I forget all about cancer!!!  I play the silly game any time I am over anxious and it helps.  My husband thinks it is funny I clean virtual cat litter.  I will have to check out the series when I am recuperating from surgery.

Neta:  Love the skiing pictures!  It gives me hope that one day maybe I will be able to do more challenging things than just trying to get up off the couch!  Lol.

Particia:  The SOS team looks so awesome!  Sounds like such a great thing to be a part of! 

Hope all the rads ladies are doing well!

Sorry I can't catch up with everyone- feeling super tired.  One last question for all of you done with chemo - how long before the crazy muscle joint pains when away??? I feel like I am walking around like a very elderly woman.  My hips hurt a ton. 

Mariposa, I am not to Neta's level of strength, but am stronger each day. I do still have joint pain from Taxol. Most noticeable in the morning or when I get out of a chair. Makes me feel so old. I hear too that Tamoxifen only adds to that problem.



1/3 of rads done! yeah

To all those having surgery, if you feel it would be helpful, I can send you the dropbox link to the guided meditation cds that my cancer center put out.  I found them helpful in dealing with the stress of all this.  They are meant for surgery, chemo and general relaxation.  I have uploaded them to a dropbox account and can send you the link.  If you are interested, PM me your email address and I will happily share them.

PS  I've gotten better at using dropbox.  When I first offered to share, I couldn't figure out how to use dropbox.  Now, thanks to my tech support system, otherwise known as my 21 year old daughter,  I can work it!  

Neta~ thanks for your words of encouragement!



I to am getting stronger but like JoJo says, after I get out of a chair, I walk like a little old lady.



Tissue expander question...do any of you ever get the feeling like water is moving around in your breast. Today it felt like it was dripping down my chest. Hope I don't have a leak!

Hope - Right there with you and Jojo.  I know I am getting stronger, but when I first get up, I too walk like a little old lady.   It's almost as if I have to get my motor reved up and then I'm off!  LOL!

I suggest you contact you PS in the morning regarding that feeling.  I've had TEs in since July 2012 and never experienced that.

Mariposa, I'm still having joint pain and stiffness. I notice it the most in my hips, too, and when I get up from sitting I must look like I'm a hundred years old. MO said this could be caused by the menopause. I've also read that herceptin causes joint pain.



Hope, I had the feeling of the fluid shiffting around, but very gradually...like after all night of sleeping on my back, the distribution would be different than after being upright for a while. But never a feeling like dripping....definitely give the PS a call.



Stay warm and sleep well everyone...

xoxo

Happy Tuesday Girls, Amy, glad you are feeling better. Rest is the best medicine .



I am 12 down in rads can't wait to be done. Met with MO today and he said your doing great blood work is good see ya in four months. It was kind of weird I am so use to seeing him now it's RO once a week and plastic surgeon following to continue fills then reconstruction .



For all that are going to have surgery good luck all will be well

Mariposa, she meant chemopause. She said I'd get my period back in a couple of months, and it's been almost 3, so hopefully soon!

Can I pick your brains?  I’m wrestling with how I move forward from all of this in terms of the changes I make in my life, and the role I play in my ongoing health care.  So I'd be interested to know what you’ve decided to do, and why.

1. What role have you all decided to play in managing your healthcare to keep cancer at bay, and why?  (Will you be more likely to leave it up to the experts, scour the internet and read every book available, or somewhere in between?) 
2. What resources (websites, books, etc.) have you found the most helpful to keep you feeling informed and able to participate in managing your healthcare? 
3. What changes have you made in your life as a result of your diagnosis even though the change hasn’t yet directly been proven to reduce risk (like, for example, deciding to eliminate parabens from your personal health care products even though there’s no study that links them as a cause of breast cancer)? 

To your comment, Mariposa, I have been struggling with whether or not to eat tofu.  I've been vegetarian for almost 20 years and 6 years ago discovered I like tofu (due to eating more asian food).  My mom hates tofu, so I never had it at home.  I eat tofu ALL THE TIME now.  I asked my doctors if I should stop eating tofu, and they said no.  Since I was pregnant at the time I asked the question, they didnt want me to stop eating anything!!  I looked at my path report and my estrogen receptor is over 90 percent positive.  The studies I've read have said its ok to eat tofu, but I guess I question everything these days. Mariposa, is there a study you read about tofu?  Does tamoxifen help protect us?  I love my tofu, but would definitely want to give it up if its adding fuel to the flame.

Saw my PS today for my first follow up. I got one drain of 3 pulled so down to just 2 whoohooo! He also removed all my bandages and things look.fabulous considering. I also had a fill of 60cc in each side. The car ride home was painful to the point of tears... I had taken prior pain meds but was out of valium. Next time I will surly be taking the valium before hand.

I also had a splint made for my hand due to the cysts I had removed during surgery I will have to wear that for two weeks.



As.far as soy and tofu I can say that I was afraid to take biotin due to it containing soy and my MO and BS said I would habe to consumer.way more biotin than humanly possible for it to effect my cancer so I would assume tofu is fine to eat.

Amy- So glad you are doing well!  Hello to everyone!  I have been enjoying this little break after chemo!  I feel a lil bit stronger each day!  But I still feel very weak....I do the treadmill for only like 10 minutes and I'm pooped.  But I am trying to take baby steps.  Saw my MO today and she said that it was a "very rigorous regimine" that I completed so listen to my body!  So thankful to have that behind me!  Energy is significantly better.  I think i've been napping the past 6 mos!  I won't see her now until after radiation.  She said we will discuss tamoxifen then.  I also asked about follow up scans and she said she wanted to know why I wanted one?  I said to make sure it's all out of me!  She said something like the scan will only show like 10,000 cells so if I have 9,999 it will show nothing.  ????  Anyone else heard this?  I'm also nervous about the tamox especially for 10 years-but putting that out of my mind for now....Went to RO and got all mapped!  I felt like I had to stay still forever....but glad it is done.  Looking forward to getting that done.  Kudos to those working their way through it!  My post BC plans include trying to incorporate more fruits and veggies into my diet but i don't plan on any major overhauls.  I have three kids and will continue to cook for my family the only way I know how by including all the food groups and keeping everything in balance.  I am going to try to exercise more regularly and that's about it.  Wishing all an SE free day!  Becki

Amy - Congrats on the drain removal.  I still have my one and only... till Thursday.

Hey there Timbek!  Isn't it nice to have some energy again?  Couple weeks after chemo I was like, right, THIS is what it feels like to be me!  I'm not into Tamoxifin yet, but will be soon.  I'm looking at it this way:  10 years of protection - sign me up.

Regarding TOFU.  This fall I read this breast cancer prevention diet book that touched on hormone positive breast cancer and tofu.  Apparently there's some compound in the tofu that's supposed to be protective, but much tofu is manufactured in a way now that removes that compound.  (This recollection comes to you from the thick of my chemo brain days, and since I've loaned that book to my sister...)

Marianelizabeth - Interesting to hear the resounding YES! to tofu.  My onc only gave me a so-so, you can have some, but just not a lot, response.  Didn't inspire confidence.  In the last couple years pre-cancer I started taking supplements - vita B complex, digestive enzyme, multi-mineral.  Have backed off almost completely.  Based on nothing except figuring I'd like some direction in that area before continuing something that might be a contributor to my frankenboob situation.  I say that, as I reach for my vitamin D.  Can't part with that.  Although, is all vitamin D created equally?  Cheapo Target brand too? No one seems to keep an eye on tht industry.

Mariposa - I really struggle with the reseach/learning part of this.  It's all intersting, but oh-my-god the time I could spend on this is unbelievable.  Then there's the part about really understanding and evaluating what I've read.  Like, how do I know which study is better/more reliable and why?  So, I think I'm taking the middle path - I'm gonna lean heavily on my docs, but also regularly furrow my brow and consult books and The Interwebs.  I'm currently reading Anti Cancer: A New Way of Life.  So far, a good read.  But I find myself annoyed that cancer-related publications could be outdated quickly with the amount of research and new information available with such frequency.  All the printed material I read leaves me wondering whether the recommendations and information are still accurate.  I too have liked the annie appleseed project ewg.org sites.  And lately I find myself hating the costmetics and personal care industries.  

Here is a link about processed soy.  http://articles.mercola.com/sites/articles/archive/2010/09/18/soy-can-damage-your-health.aspx 

and another one that is more recent  http://blog.femmed.com/reduce-risk-of-breast-cancer/

jojo I am with you on that last comment!