Being all Zen and In the Moment

Hey violet7, just wanted to say hi.  Since my trip neg diagnosis, I've been pretty consumed by dark thoughts too.  I'm a research junkie and have learned a lot, but sometimes, it just seems so overwhelming - and I think, why couldn't I have the ER+ kind? (so much more common); why couldn't my nodes have been negative? Why couldn't my tumour have been smaller? etc.  So useless really to dwell on this, but I do.

After micromets in a sentinel node, I am 7 days out from my second surgery for complete axillary dissection.  Should know results of that Monday - very anxious!

I'll be meeting my onco again next week, and assuming I'm healed up enough from surgery, I expect to start chemo early in December.  So we'll be going through it together!  Congrats on the PET scan!  That's a real boost.   

Yes, Violet, all four of us triple-neg girls are still doing well, although I had a second primary in 2007 and another triple-neg sister in our group has just started chemo for a second primary this fall. Still, in my mind, a second primary is much better than a recurrence.

We know they're new tumors because they're slightly different from our original tumors. For me, my 2005 cancer was medullary and the 2007 was IDC. Both 3N, though. The other lady has a slightly estrogen-positive tumor this time. We both tested negative for the BRCA genes, but are both apparently very good at creating breast cancer. Hence our mastectomies!

Sadly, one of the youngest members of our Rocktober sisterhood (not 3N) learned this spring that she has mets to lungs and spine. She's only in her early 30s and lives in Australia, so it's tough for us to help her as much as we'd like.

Our Rocktober thread isn't current because we moved our message board off BC.org to a Gmail account to give us a little more privacy in 2007. I think we had more than 10,000 messages when we moved, so we're quite the chatty bunch. I still check in with my chemo buddies at least once a day! We're from Canada, USA, Israel, Britain and Australia.

One thing to keep in mind is that most of the people on BC.org are here because they're having problems, recurrences, etc. So you may think that *everybody* with BC is going to develop longterm problems. But that's not the case. The women who aren't having problems don't tend to hang around BC.org after their treatment ends.

So the population on this site is a little skewed towards women who have had more problems. That can make you feel depressed if you never see anybody who doesn't have problems posting here. Those people simply went on with their lives, which is a good thing to do, too.

--CindyMN

Medullary is a pretty rare variety of triple-neg BC. It's kind of encapsulated by white cells so it tends not to travel. I opted for mastectomy because my tumor was kind of big and I really wanted to avoid radiation for as long as possible. Like holding back a weapon for the future if needed.

I also had DDD breasts and so more real estate would have to irradiated, which would increase risks of complications. And my first tumor was on my left side so I worried a bit about potential damage to my heart. Also radiation tends to limit options on reconstruction.

So I chose skin-sparing mastectomy with immediate placement of expander for implant. I also reduced my right side to help match. With the info I had at the time, I still think that was the right decision for me. (One mastectomy at a time.)

Even my reduction surgery reduced my risks for recurrence, and a bilateral mastectomy reduces it even more. My oncologist checks my foobs (fake boobs) very carefully for any lumps that may show up between my implant (under my pectoral muscles) and my skin. I think any new BC would be hard to miss.

Mets, though, can happen anywhere. But they typically wait for you to show symptoms before running any tests because scans can cause so many false positives, it will drive you crazy.

Were you on the HysterSisters site? I spent a lot of time on that site in the spring of 2003. (My hyster was not cancer-related) The HysterSister site was such a good experience that it sold me on online support groups in general. Then a friend of mine had gone through BC a few years before me, so she recommended BC.org to me.

It's common to try to pinpoint what caused our cancer because that would help bring some order to the chaos. But I don't think we'll ever really know for sure, unless we're BRCA positive. I'm sure there have to be other genes involved that haven't been found yet.

I'm the first in my family to have any type of cancer whatsoever. My risk factors were minor obesity and never having been pregnant. Probably lack of excercise and bad diet, too.

You may find other women quizzing you, trying to determine what you did "wrong" to cause your cancer. That's mainly so they won't feel so vulnerable themselves, IMHO. The truth is that it can just fall out of the sky and hit anybody on the head. The biggest risk factor is having breasts.

I know that's not very comforting, because we'd all like more certainty and control in our lives. But crazy stuff happens to people every day. Unknown aneurysms burst or we lose that argument with the proverbial city bus. Nobody knows how long they're going to live.

But we've had the unpleasant shock of having our noses rubbed in our mortality. <grin> But, just like any other bad thing that happens to you, it gets easier to deal with in time.

Have you thought about cutting your hair short before it falls out? You could donate it to Locks of Love. You've got time to think about it. Your hair will probably start falling out about 14 days after your first chemo. (At least you live where it's warm in the winter!)

--CindyMN

Hi Violet!  I thought I'd chime in here about chemo.  You will not feel bad while it's going in and probably not for a day or two.  For me, I never really ever felt that bad.  Just tired and a little queasy during the immediate week after chemo but I bounced right back and felt great most of the time!

You should get your prescription for a wig and get one picked out so you are prepared for when your hair goes.  To me, being ready with my wig was one of the best things I did.  It's hard enough to lose your hair.  Being able to move in to my wig helped me feel presentable to people and have more self-confidence.

Lorrie 

Sorry I'm so long-winded! <blush>

Also have some saline eye drops on hand and Biotene mouthwash works great.  I never had a single mouth sore during chemo.

My hair is about 3 1/2 inches right now, but I have had 3 trims and 1 cut. My hair grows really fast.  I decided that I really liked my hair short and can just wash it put on some mousse, blow dry with a round brush and go.  Never had that kind of freedom before.  I was always tied to a curling iron or hot rollers. My hair came back in an ugly steel grey color but had the same fine texture but is thicker.  It was always straight and came back in that way too. My brows and lashes are light too, but I always used mascara.  Recently I've been getting the mascara that has one end that is white and makes "tubes" so your lashes look longer, then you use the other end to color them.  It's working Ok.  My chemo nurse gave me a big zippered cloth bag that I took to my treatments filled with books, crosswords, snacks,etc.  I called it my Chemo Bag.  I still use it when I need to carry lots of stuff.  Wishing you the best of luck tomorrow.  I know you will do great!  (((hugs)))

Hi Violet,

You've gotten some great suggestions here!  I bet the A is adriamycin.  I had ACT chemo, which is Adriamycin and Cytoxan every 2 weeks times 4, then Taxotere every 2 weeks times 3 (supposed to be 4 but I had neuropathy).   You can do this. 

For me, I'd say don't overwhelm yourself trying to get anything done during chemo.  If it works out that's great, but try not to have too many expectations.  Just get by.  If you can help it, don't go to chemo alone.  Friends and family love to go with you and visit, and if you go alone, you hear too much of other patients in the room, and it can be depressing!  Most of them are so much older and a lot of them are very sick so you'll probably feel out of place anyway.  

If you can, sign up for the Look Good Feel Better program in your area.  Keep your options open about the wig.  I had several, but I hated them all.  I think maybe they didn't fit me well, and they were horribly uncomfortable and un-natural.  I always felt so weird wearing the wig, but I did.  Then at the end of my treatment, I started just wearing a scarf and it was SOOO much better.  So much more comfortable, and I actually felt less conspicuous with the scarf than with the wig.  At first I wanted the wig because I didn't want to "advertise" my status, but I wish I would have just worn the scarves from the beginning.  Some people look great with wigs and have a lot of fun with them, so just try to be open to whatever works for you at the time.  

Do you know about the free scarf from http://www.franceluxe.com/ for cancer patients?  They are absolutely gorgeous, and the owner is wonderful.  You can choose a wrap or a scarf, and I'd recommend the scarf because the wrap has the keyhole opening at the back, and even with the headband it's hard to cover the baldness.  

Good luck!  I know it's hard to believe, but before you know it you'll be looking back on it and giving suggestions to newbies!  Take care! 

Hey violet7, my chemosabe!  One thing you might want to consider for your hair: get it cut short now and get a fall made with your own hair:  http://www.hatswithhair.com/Wig%20Made%20With%20My%20Own%20Hair.aspx

I'm sending my locks off today.  For the first time in 40 years, I have really short hair, but surprisingly, it doesn't look bad.  I'm going to buzz it when it begins to fall out.  I figure that's one thing I can control about this hateful disease!

Thanks to all you ladies for sharing your experience with chemo.  I think I will be on a dense dose schedule, so I figure the first week will be rough, and hopefully the second will be better. I would desperately love to get out and ski this winter if I'm feeling up to it, but maybe that's too optimistic.   

Violet - gentle hugs. Thinking of you today.

I know that statistics are evil numbers that can be twisted, but I would guess that your chances of long-term survival are well over 75 percent (the number my onc gave me in 2005) and probably closer to 85 percent. When you factor in how often people die in random accidents or oddball things like burst anuerysms, you probably don't have much worse odds than the average person.

That said, in my heart of hearts, I think that breast cancer will be what kills me eventually. (Can you see me getting irate if I die in a car crash? "Hey, wait a minute! I was supposed to have time to say goodbye to everybody!" LOL)

--CindyMN

I so agree with your assessment about the seating arrangements on that proverbial boat! LOL

I don't anticipate either of our boats sinking any time soon, though!

--CindyMN