Staring into the Abyss

LC815

Staring into the Abyss

LC815

Forgive the drama, but the title jumped out of my keyboard before I could bring it back.

After five years cancer-free, I'm back in the onc department with a local recurrance and liver mets.

Trying to control with oopherectomy and arimidex right now.  Tumor markers sky high.

I'm hating life, but scared as hell to lose it.

konakat

Hi LC -- I understand how you feel.  Lots of women have had success with arimidex as well as chemo.  Many achieve NED (no evidence of disease) with liver mets.  There is hope -- give your treatment some time and you will see results.  I wish you all the best.

Elizabeth

LC815

Elizabeth,

I LOVE your picture (and your mantra).  Thank you for your kind words.  I've sort of been practicing that lately . . . living like I want to, not how I think I should.

My oncologist agrees with you . . . give it time.  I had blood work done "too early" in his opinion and we're waiting for next month before we "go chemo."  

Thanks for posting.  I need all the hope I can get.

Peace.

Linda

konakat

Thanks Linda -- I live by my mantra!!!

I am an impatient patient.  When I was on taxol I said it was too slow so my onc added carboplatin.  My fav chemo (doesn't make me ill), Gemzar, works really, really slow.  I am pleased to say I have gone from 7 liver lesions in January to one small one this month.  We're planning on switching me to Aromasin to wipe out the last one and hopefully stay nice and stable for a loooong time.

It sucks big ones, I know.  If I could, I'd get a scan every month just to monitor everything and watch the lesions disappear.  Once you start getting results you'll feel great.  Also, if one chemo doesn't work there are many more to try so if that happens don't get discouraged.

When you feel up to it, hop over to the Stage IV board -- there are wonderful, supportive women there.  They've helped me a lot.  Or, stay with this thread -- whatever helps you the best.

Elizabeth

LC815

Elizabeth,

I am laughing because I first read this as "I am an inpatient patient, " and thought you were stuck in the hospital!  Good for you to push your onc along.  I'm the same way.  He wants to wait a month before chemo, but if I didn't have three teenaged girls to deal with, I'd say, "Shoot it up, now!"  I'm hiding my "Stage IV" from them at this point, because I don't want them googling all the death sentences I found when researching.  They know the bc is back but don't know it spread, and they think that we're all ready for a party because two weeks ago, I didn't need radiation or chemo.  *Sigh.*

Doesn't it suck that scans cost like $4,000?  I want a unit installed in my house.

The thing about my liver lesions, is that I can't believe they can go away without surgery.  When I had my first dx, they cut the bad thing out of my breast, and then I was "free."  Chemo and Tamoxifen were insurance.  It's really hard for me to walk around knowing I have this crap inside of me.  

I started with the Stage IV board, but came over here because I'm not yet well-versed in my stats.

Thanks for being here.

Peace.

Linda

konakat

Hahaha -- Impatient patient.  I know that feeling about chemo and tamox -- I thought I was free and clear too!  I try to think about them being small, unlike the big honkin' lump I had in my breast -- I felt like that person in the movie Alien with the monster in his stomach -- get it out of me!!!!

I know about the stats -- I obsessed about them for months -- looking for the worst ones I could find thinking better to expect the worst and then be pleasantly surprised by outliving them!  So far I'm pleasantly surprised!  And you will be too. OK?

If I had a scanner I'd be scanning all day!  Have a good night,

Elizabeth

Fidelia

Hi LC815 - I too have had the shock of recurrence - TWICE - once after 4 years and 9 months of no treatment - I had been 'cured' and then again 6 years and 3 months after tamox. Both times were really shocking and the fear and sense of betrayal hard to deal with - but Elizabeth is so right - stay strong and give the drugs time to work. It is so hard to deal with this - but amazingly so many women do and come out the other side - apart from responding to the treatment - the trick is to stay SANE - I didn't tell my kids when I went Stage IV - I figured I would just deal with that as best I could - after so many years now at Stage IV my kids all know - but they are in their 20s and the baby is 18 so it is just a little easier for them to understand.

Best of luck - hang in and let us know how you are doing.

Fidelia

LC815

Right now, I'm a little INSANE, as you all can imagine.  Elizabeth, I've had to stop looking at stats, because they make me crazy.  I actually asked my doctor for "worst case" when I first found out about the recur.  What the hell was I thinking?  I'm doing the same thing as you did, Fidelia . . . my kids are 17, 16 and 13 and I'm thinking they're just too young yet to hear "Stage IV."  I don't want my oldest worrying about what college to choose based on my health. 

When I read your responses, I really feel like it might all be okay.  Thanks for giving me that gift!

~Linda

konakat

I'm not a Mom so my advice is pretty well worthless re. kids.  But I'll offer my thoughts anyway.    You can live years as a Stage IV so why worry them needlessly?  The teen years are hard enough as it is.  But I'm not a Mom so I may be wrong.  There have been some Mom threads on the Stage IV board -- perhaps at some point you might want to ask for advice about telling your kids from women who know.

Re. stats -- they're based on data that can include women from 10 years ago (bless their hearts).  Just look at the progress we've had with new drugs the past 10 years!  I thumb my nose regularly at the stats -- I'm alive and kicking.  Most days I feel fine, only a bit tired, but normal tired unless it is a chemo day.  I marvel that I feel fine, you'd never know I had mets.  I had to convince a co-worker last fall!

Let us know what your onc decides for your treatment plan.  Then we can fill you in on any SEs, what to expect.  Overall I've found the chemo I've gotten a lot easier that the AC + dose dense taxol I got when first dx-ed.  That's a plus!

clemson93

Linda,

I can add a little to your thoughts about telling your children.  I have two young children (4 and 6) and I met with my first grader's counselor at school to find out the best way to deal with this.  He suggested telling them that I was sick and would continue to get treatment when needed.  He said not to discuss death unless it was imminent.  As long as I am responding to treatment and have options, I am going to stick with the notion that I am dealing with a chronic disease.  Hang in there and know that you are not alone.

Susan

LC815

Thanks, Susan.  My oncologist wont "go there" and say the words, "chronic disease," but after reading the posts here and on the Stage IV forum, I'm sticking to that notion, too!  If I can get good news on 12/18 about tumor markers, I will feel better.  Right now, it's hard not knowing what's going on.  It's just so weird how my life story was totally rewritten that day in September as I sat at this very desk and felt the new lump.  *Sigh*

LC815

. . . and thanks to Elizabeth, too, of course!  That was what I was thinking . . . "why worry them needlessly?"  You might not be a mom, but you obviously know a lot about teens!