Starting Chemo May 2008

Yes there is life after chemo..........It's kinda like santa claus you just have to believe that its there.

I love it that we're still together...albeit on Facebook!  While I'm here... I got a very very clear "Go ahead" on scar massage from my OT yesterday. In fact, she said that without scar massage, a person can develop problems with circulation and lymph.  She spent about 10 minutes on my very small, nondescript scar as she says it may be contributing to the problems I'm having with my frozen shoulder. Basically, she said to rub vertically, horizontally and in circles along the scar to break up the collagen. 

http://www.integrative-healthcare.org/mt/archives/2007/07/six_massage_tec.html 

Hi Beergirl,

 I remember you from back then.  This group isn't around here much anymore - we migrated to Facebook, but glad to know somebody's still "lurking" and reading!  And good for you!!

Cristine

I visit here often when I am worried or need to hear something good. I dont post to much personal stuff on facebook, and now its gone public. But here I like to check on the people who started chemo or found out about the cancer when I did. It makes me feel better to know that life goes on and that most are NED. Please, 2008 group check in more often so i wont think everyone fell off the face of the earth.

Yep, May 2008 is still vital and active...I had a met last year but was able to have it removed and am NED now for a year.  And the dance continues!!

Just thought I'd check in on ya all tonite! Even tho I did no chemo you all were a part of my walk in here, for that I am always thankful you were all so supportive no matter what. Always thinking of everyone. Sorry to hear your crappy news Chris, You'll be in my thoughts and prayers!

Love you, Robin.

I guess I'll check in here, too.  (Hi, everybody!)

I'm on a 6-month recheck schedule:  mammogram/breast surgeon visit alternating with med onco visit, one or the other every 6 months. I just had my mammogram/surgeon recheck this past Monday (10/8). Those appts started out in September and somehow migrated into that dreaded sea of pinkness we used to call October.

Everything went fine at the recheck. Remaining breast is still "heterogeneously dense - may obscure detection of small tumors", but, hey, we need a little mystery, right?  My surgeon admired my new "find" - a Genie bra that has a pocket just the right size for my prosthesis.

Next week is my biennial DEXA bone density scan. I've been on Arimidex/anastrozole for more than 4 years, and so far, my bone density has been stable.  We'll see if that's still true (don't know what I'll do if it's not).  I just got a phone call from my cancer center, inviting me to participate in an NIH-sponsored study about follow-up care in women who've had bone density scans.  The study consists of 3 telephone calls over the year following the DEXA scan, asking questions about overall health, bone health, attitudes about such things, etc.  It's painless and free, so I'm in.

Most of us in the original May '08 Chemo group don't hang around BCO much anymore. We're still dealing with breast cancer in one way or another:  still taking estrogen-blocking drugs; still struggling with thinning hair or chronic fatigue or memory lapses; still trying to fend off the onset of lymphedema (or already dealing with an LE diagnosis); still wondering if/when the other shoe will drop. It's disconcerting to read that 50% of the recurrences in women with ER+ breast cancer take place after the 5-year mark.  That's just how it is, though. We try to move on; some of us are better at that than others.  Here's an example of the sort of thing that interferes with moving on (IMHO)...

When I got home from my mammogram/BS recheck, I found a cheery note in my email in-box inviting me to participate in a local "BC awareness" event. Here's an abbreviated version of the email (rock, are you seeing this?):

++++++++++++excerpt begins++++++++++++

Subject: Survivor Testimonials: HELP!
Hello,

One of the things that we are doing at [name of upcoming event] is having a display of survivors and their stories. However, we have not had such a great response thus for.  Our goal is to have a massive display of testimonies. But, the testimonials are not limited to just survivors, we also welcome them from those who may have been indirectly effected [sic] through someone close to them. This is where I need your help! Could you please send this link out to friends or members of your support groups?

++++++++

[This appeal was followed by a link to the October 2012 program announcement, plus a link to a sign-up sheet on which the participant was to submit her/his "testamonial".  Participants were strongly urged to include a photograph.  The program this year will be similar to last year's, which was this:]

++++++++

There will be free food, giveaways, face painting and entertainment. A brief program featuring guest speakers … who will share their stories and expertise will begin at noon, and will end with a group photo and balloon release in honor of breast cancer survivors and victims.

++++++++++excerpt ends++++++++++

My tongue is sore from being bitten, and my fingers are sticky with adhesive from the tape I used to keep them from typing a response to that email.  IMHO, pink should remind us of baby girls. Little, innocent, fun-loving grandchildren. Not a potentially fatal disease that strikes adult women.  Some of us are already far too "aware", and many of us do not wish to be placed on "display."

(Really, I'm typically more cheerful than this. Sorry. Maybe I should eat lunch and then go for a walk.)

otter

Once again, I'm finding myself searching for that darn "Like" button! Congrats on everything, Linda.

otter (who was also left with sparse eyebrows and very short eyelashes, but I've learned to deal with it)

ETA: Oh, hey - this is what my hair looked like almost exactly 4 years ago today (Oct. 14, 2008):

[Edited again, 10 years later: I am sorry. :-( My photobucket account is no longer active, so photobucket isn't hosting any of the images I posted on these boards.]

otter

Hi, Robin!  I *love* my Genie bras. 

Someone on the "Mastectomy" forum (BCO) posted about them in a thread discussing alternatives to traditional mastectomy bras. I had spent a year or two and hundreds of dollars trying to find a real mastectomy bra that was comfortable and fit me properly (the 1st criterion being as important as the 2nd, IMHO).  No joy.  I went to professional fitters, but all they did was fuss at me that the bras I was wearing at the time (my pre-mast bras with a fiberfil foob) were not providing "adequate support."  Hah! - as if "support" is that critical when you're a size 36A. The mast bras they sold me turned out to be too tight, too "pointy" (rocket-ship cups), and have straps and plastic that cut into my ever-tender mast skin.  I can't wear a single one of them.  <sigh>

I heard about "Genie" bras and "Coobie" bras (and "Ahhh" bras, which didn't have pockets at the time) from the Mastectomy forum. One day I found a package of Genie bras at Bed, Bath & Beyond, in the "As Seen on TV" department.  On a hunch, I bought a size "Large".  The cost was minimal ($20 I think, for a pkg of 2 bras), compared to high-end bras at Vicky's Secret and especially compared to real mast bras.  Voila!  The "Large" fit nicely.  The Genie bras come with removable inserts in the pockets for ... well, for enhancement.  I took those out, and put my silicone prosthesis in the pocket on my mast side.  It became a match for the right side, and was plenty comfy (and supportive!).

Some women have complained that the wide elastic band of the Genie bra rolls and wrinkles up.  Mine does, too, especially after a few washings. I haven't figured out what to do about that.  A wider, stiffer band would not roll but it wouldn't be as comfy either.  These are pull-over-the-head bras - no hooks or snaps - but they're really stretchy so I haven't had a problem there.  (I can't pull traditional sports bras over my head because my shoulders are too broad and arthritic.)  Other women have complained that Genie bras don't give them adequate support - they're too stretchy - but that hasn't been an issue with my size-A side.

I don't know if a store will let you try on a Genie bra before buying it.  I didn't bother - I just took a chance.

otter

Thanks for the suggestion, dsub! I've been machine-washing mine (lukewarm water, gentle soap) and hanging them on hangers to drip-dry. Maybe that's too rough and I should switch to hand-washing. (I've never hand-washed bras, but I've never spent more than $10 on a bra until I bought a real mast bra.)

otter

Dang it, Kristy... I flat forgot. My dx anniversary was Jan. 14.

Hey - maybe that's a good thing, eh?

otter

Well well. Look who you meet on a whim! I actually forgot how to find this forum hahahah! I want to do something with all our posts ...all 246 pages xx

Hi sista's....It must be the time for reflection.   5 years ago today I had my mastectomy...look how far we have come !  Love that we are still all connected....even those who are watching from above !

Woo-Hoo! Look at all the familiar faces!

I, too, wandered back here on a whim. Okay, not really. I have a regular recheck with my med onco this next Monday (4/29); and I am sure, beyond a shadow of doubt, that we will discuss what to do after 5 years of Arimidex/anastrozole. The alarm on my timer goes off in June. If she wants to keep me on this circus ride any longer than that, she'll have to write me a new prescription.

We (onco and I) were hoping there would be some guidance from clinical trials that would help with the decision. Heck, y'all know what a sucker I am for numbers and stats. It wouldn't have taken much to convince me one way or the other about more time on Arimidex. But, I've found *nothing*. (I'll confess that I don't scour the BC literature like I once did. Gotta get on with life, ya know.)

The trouble is, of course, that lack of evidence of an effect is *not* the same as evidence of lack of an effect. So, if I'm given a choice on Monday, I don't know what to do. I'm doing okay on "A" -- the expected aches and pains and loss of sleep, and the moodiness etc. My bones appear to be stable. If I thought I could buy more time, I'd keep taking this estrogen-sucking drug awhile longer. But, what are the odds that it would give me more time?

Sorry to sound so morose. I am not running out of time, AFAIK. I shouldn't even talk like that. It's just that, ... well, you know.

Signing off for now...
otter

ETA: Dang. I thought this website was optimized for handheld devices. I wrote the above on my iPad, and BCO sucked out all the formatting -- paragraphs, line breaks, white space. Gotta learn how to be less long-winded, I guess.