July 2010 Rads

Donna - glad to hear you had a good time on your London trip. It was very sweet of you to light a candle for all of us - thank you! Try not to worry too much about the skin thing (I know...easier said than done). Hope your results come back quickly and benign.

Sonia - I agree - everyone here has become friends, even if we have never seen one another. I sometimes get my "in-person friends" telling me I need to get off this site and move on with my life. It's hard to get them to understand that this is what is helping me move on with my life. I cannot imagine having gone through this without all of you.

Julie - still thinking of you - wish there was something I could say to make things better for you. Hope you get your results back and all is fine with them. You definitely deserve a little kindness from the universe.

Karen

Hi Everyone:

Thank you for all the prayers and thoughts for me and my family. Today has been a hard day for me, but I will get through this in time.



Got all my results back..GOOD NEWS...Bone test-AOK, Bone density-said I have bones of a 40 year old and looks great-Arm pain is not Lymphadema (however you spell it). The PT said its from the nerves and tendents being fried during radiation and take months to a year to heal. so I will have Therpay twice a week for a month.

For my Hot Flashes acupunctury has done me a world of good, my HF went from 20 a day down to 4-5 a day....

Donna-welcome back, I think you pain is the same as mine.

Ok, everyone been a long day, again thank you so much for everything.

Many hugs Julie
p.s. I can't spell tonight, eyes are so swollen from crying

Hi Ladies,

Hope you are all feeling well and taking good care of your lovely selves.

Just want to say Chicago - I have been scared straight - I am officially vegan now and have been for a full week. Cream was the most difficult thing I had to give up but I feel so relieved that I am not putting any estrogen into my body deliberately, it feels like a relief to have finally given it up. I am finding the reading I am doing about meat and dairy repulsive - I can't believe it took me this long to really understand how much impact my food choices have on my body.

Hope you are ok Donna.

Sonia 

Hi Julie - Sorry to hear you had a problem with your pill from hell.  Hope you are hanging in there.  The gloomy, windy weather here in IL is NOT helping my mood at all!  At least it is sunny today.

Donna:  Congrats on the Mole being AOK....One less thing you have to worry about...:)

I went and bought DIM-Google it.  I went on the natural site here and a lot of woman take it via the pill from hell.  I see my Onco this month and will speak about it with him, I can't take the head pain, plus I went to the store, called Jim and said "Come get me" I could not drive I felt so OUT OF IT...

Also could be the passing of my mom, as much as I knew this day would come it was a shock the way it all happend and so fast, still trying to process her death and my sisters.  LET THIS YEAR BE GONE...

I hope everyone is doing well and getting back to "NORMAL"...:

Miss everyone

Julie

Hello all,

Donna,  I am so happy for your results.  I am sure it is a relief. 

Kim and Donna, I am with you,  that even the little things I find can overwhelm me.  I feel like I cannot handle anything more,  I don't even think I have really handled this yet.

Maybe that is why I feel so fragile,  and the lack of support sometimes in the REAL world can be difficult.  I just want to run away and hide.  Hawaii anyone??????

Julie,  glad it isn't lymphedema and that your acupuncture is helping,  I am trying to work up the nerve (LOL) to face more needles.  I hope you are hanging in there.   

Patty,  I agree it is so weird as to how to respond,  I hope it is past tense,  but I don't think I am there yet mentally.   I also found it weird to go back. 

Sonia,  good for you,  I don't know if I could do it,  I think if I had someone cooking and organizing that part of my life,  we have one excellent vegan restaurant and I could do it there for sure.  

I am finding it so difficult to balance everything and I don't want it to get away from me.   I am finding my mom is needing more than I can give her and she won't consider any help or moving somewhere where she could have meals and some medical care. 

I am trying to balance my need to do good work at my new job,  and yet still dealing with the fatigue that hasn't faded as quickly as I had hoped.  I am frustrated with myself at times,  and others as well,   Last year I chaired a conference and was told I may not even be able to go this year because of my work load.   Yikes,   that upset me.   I feel I am letting others down including myself.   I am sure it is getting old that I am not up to speed.   

 But the good news is,  I am feeling pretty good overall.  Though I was surprised when you said it could take 2 or 3 years for the breast to heal. 

At my mindfulness class,  people started talking about cancer and that was good as we all have/had cancer.  I was again stunned by other's experiences that were negative in their treatment and I got really angry,   it seems we all have enough on our plates without unintentional(?) poor treatment.   I also continue to be amazed at how many are affected.  and I really am glad breast cancer awareness month is finally over,   My favorite was on the radio talking about how many women die each week,   YIKES>>>Enough already. 

Thanks again for being there and big hugs,  I feel I can really share how I am truly feeling with you all,  Sorry for the pity party. 

Brenda  

Hi all,

I was out of town a couple days and had no computer (or television) access. It was kind of nice to be disconnected.

Donna, glad to hear your mole was benign! Sorry to hear your boss was a jerk.

Julie, I'm so sorry you have had such a rough year. Next year has GOT to be better.

Patty, I know what you mean about checking off forms. I find that now that I don't have cancer in my face quite so much, that I'm almost surprised all over again when something reminds me I have it. Only now it isn't a feeling of horror, so much as bewilderment, like "I have cancer? Can that be right??"

Brenda, I get what you're saying about the lack of support in the "real" world. Monday was my birthday, and neither my brother or sister called me to wish me happy birthday. They've been avoiding me like the plague since I was diagnosed. Sometimes I just want to scream at them, but it would do no good. My brother send me a card, but usually he would call. I am tired of being sympathetic about how difficult my cancer has been for other people. It's not been a picnic for me, either! I'm sorry work and your mom are adding to your stress.

Is anyone finding that you're shifting from sad/scared to angry?? I have been feeling REALLY angry lately - just pretty much fed up with everyone and finding it much harder to not say out loud what I'm thinking.

Hope everyone is having a decent week and sending wishes for an uneventful fall and winter!

Karen

Donna - So glad your results were benign.  LOL on the Mole.com. . .worse thing is that it probably does exist!  OMG on your boss. . .obvious much?  People keep asking me how I am doing and I keep answering fine too because it seems like the right answer. . .I have this bad habit of oversharing with people so I am trying to put the breaks on that. 

Karen - I can't believe your brother and sister didn't call on your b-day and have been totally missing in action.  I feel like I have had more people jump ship now that I am "finished" with treatment.  I've definitely had some outbursts of frustration and anger throughout this process.  I went to a wedding last weekend and realizing I couldn't wear anything that required a strapless bra sent me into a meltdown.  Luckily my husband talked me off the ledge.  I have another wedding coming up in a few weeks in Mexico.  I am so excited to go but the whole mastectomy bathing suit issue is not great.  I think it bothers me most when I try to do "normal" things (sorry Julie) and realize there is some sort of lingering BC issue I have to accommodate.

Sonia - congrats on going vegan.  I have to say that we've had a significant shift in my household.  Missing my mornings lattes for sure (switched to green tea) and cheese but the meat I could care less about.

I had another fill yesterday.  They had to fill 20 CC's instead of the regular 60 they had been doing because I couldn't take the pain.  Doing a little at a time helped a ton because I was in a lot of pain.  My recon breast is so high and tight. . .it feels like it is directly under my collar bone while my other breast droops like a breast typically does.  The good news is they augmented the right side at the same time and I've had 1 expansion on that side which looks great.    Silver lining.

I have my Mammo of my remaining breast on Tuesday.  Anyone else gone for one yet?

Well happy friday to you all. I haven't been poking around for the the last week and so haven't been up to posting - I'm just so tired and sleeping 12 hours every night and it just doesn't seem enough. I am feeling tired of things too. TIred of working so hard, tired of the endless chatter and meaningless stuff. I could go on but I won't. I am feeling much calmer about things in my life - that is  until I read a thread a few days ago about one of the women on this site who had a reoccurance after 4 years - pretty much my stats  and it has really freaked me out. I am having a terrible time with my thoughts again. I realize I shouldn't read things that I know will upset me but I find my empathy for everyone here over rides my common sense and sense of self-protection. I think when that happened this week it made me avoid the site for days. I feel like sometimes I am much better when I don't come here but then I miss you all and I want to know how everyone is doing and I feel like I can't stay away in case there is something you say that I might need to know. It's like I can't live with the information and can't live without it. I know when I just come to this thread I do really well but I obviously didn't stick to that rule this last time. I am finding so much comfort in what you say - about work, how family is treating you, what you're going through - it just is so helpful and so important to my healing. I am going to try to just connect here and on the tamoxifen thread - So glad to have caught up with you - read all your posts.My heart goes out to all of you.

Sonia 

Yes Karen - that was the one. Scared the bejeezus out of me. Been feeling around for days looking for lumps - kinda feel crazy. I have been formulating a plan about changing my life. Thinking about starting a private practice and working in a more part time way as a counsellor rather than 6:00 am mornings - crazy days at school and not finishing until 5:30. I really find that things that would have upset me at work or would have motivated me to keep up a frenetic pace are no longer able to. Nothing can keep me awake at night anymore - ha!! I love that part - just not caring about work as much. Something happened right after my diagnosis in may at work and came back to haunt me in September. I actually said to the headmistress of our school that my give a shit was broken while we stood discussing it on the way into work (it was early and I hadn't put my work face on yet - actually may be a side effect of tamoxifen) and she looked so stunned that I would say such a thing that by the time she recovered I was in my office. She suggested to my immediate supervisor I may want to adjust my attitude. I told her my attitude had already been adjusted - by cancer.  I really no longer care about work the way I used to that is a for sure.

Sonia - if anyone comments about my attitude, I plan on stealing your line about your attitude already having been adjusted by cancer - you must think quick on your feet to come up with those kind of remarks!

Brenda - yea, it would be nice to have some control of something. It feels like I'm just now starting to have a little say-so in my life again, but I am fearful that a recurrence will happen and then cancer will be running the show all over again. Ugh.

Hope everybody has a good week!

Karen

Here's the link if you're interested:

 http://clinicaltrials.gov/ct2/show/NCT01101438?recr=Open&cond=%22Metformin%22&lup_s=07%2F04%2F2010&lup_d=30

Hi ladies,

It's been a while but it's really nice to be able to 'drop in' and read everyone's post and see how everyone is doing.  I have a question for anyone.  I met with my new oncologist last week.  She asked about my periods while being on Tamoxifen.  I told her I've only taken it for 3 weeks but did have a period.  She then mentioned that she would like to give me a shot of Lupron to completely shut down my ovaries, because I"m very high w/ER+/PR+.  Did anyone else have this done?  I'm scared of the SE's of Lupron, but sometimes I wonder if Tamox is really working.  I feel for you who have had major SE's, but at first I thougtht I was having the hot flashes, but I think it was just because the weather was hot here in CA.  Now it's cold, and nothing.  I'm a counting my blessing that this is not as bad as I expected, but I wonder if it's working for me.  My new onco mentioned that it probably was working (sounds assuring, huh ), but wanted to also add the Lupron shot.   I do have the mood swings, but from what I can tell it's a bit more than before when I had major PMS'ing.   Just wondering.

Karen - the clinical study does sound interesting, but it's mainly targeted to ER/PR neg women, unless I read it wrong...which is very possible   I'm highly ER+/PR+ almost to 100%, actually 98% in both.  But it does sound interesting.

Sonia - Sorry to hear about your SE's.  I hope that it does get better.  I'm also at a point to decide if maybe it's better to have my ovaries removed.  I don't plan to have any more kids but still hesitant about making a decision.  I hate to take the Lupron shots to shut down, but sometimes I wonder if it's better to remove them because of my fear of endometrial cancer. 

Patty

Hi all,

Sonia - I feel achey on Tamoxifen, too. I thought the achiness was related to decreased estrogen, though, so getting your ovaries shut down may still leave you with all the same symptoms. I am entering my 5th month on it, and the side effects seem to be easing up. I don't know if they are really altering, or if I've been blaming Tamoxifen for what may have been radiation-related symptoms and stress. Who knows?! One perk, though - for the first time in 37 years, I had no period this month! WooHoo! Hope that is IT for periods!

I don't know if the protocol involves Metformin in addition to Tamoxifen or instead of it. There is a study posted somewhere on these threads that describes pretty impressive outcomes for Metformin at shrinking tumors and reducing recurrence (in both hormone positive and negative women, I think).

Patty - the study is looking at both hormone positive and negative - I think they're just hoping it will be another tool in the arsenal for hormone negative women, who have fewer options than those of us who are hormone positive.

Take care everyone,

Karen