New to forum, Stage IV, re-occurrence

 

I'm glad to have come across this forum as I've learned things already viewing some posts.  I was initially diagnosed in August 2009.  Oddly, the words triple negative breast cancer were never spoken, just breast cancer and the hormone receptors are negative.  Being naive I thought that was a good thing, go figure.  Maybe it was a blessing since I never really worried about it coming back, just kicked it's behind and moved on with life.

 

Discovered it was back in July 2011.  Since then the words triple negative breast cancer and "chemo for life" have been spoken.  Stage IV, chest wall is polluted as well as lymph node involvement.  Has anyone else had the chemo for life talk? If so, how long has it been? It's tough to absorb and process.  Part of me can't accept that we're not trying to cure me, just keep it from spreading for as long as possible to some place it will kill me.  It's also hard to explain to family, friends and co-workers that I will always have some kind of chemo for as long as I live.  I'd never heard of it before and neither did anyone else I knew.  I've also been told that they don't expect any one drug combination to be effective in shrinking things or holding it up for any longer than five or six months.  No one is throwing out a number of years either. 

 

It's been eight months and I'm on my second drug combination.  First combo was avastin and taxol.  When it stopped working the cancer had moved into my bones.  Since December I've been receiving gemzar and carboplatin with zometa for the bones.  It's been helping.  What was in the bones is pretty much gone and the rest is holding steady.  I have my next PET/CT scan next week.  Keeping fingers crossed things havn't gotten worse.  I feel like I live from one scan to the next.

 

Some of the most difficult things for me have been dealing with other people's emotions, chemo brain and work.

 

I was very angry at first, but have mostly gotten over that and have just been focusing on treatment, staying positive and keeping life as normal as possible.  I think we all put a brave face on for the world and fight as much for those we love as we do for ourselves.  My son, (he's 20) broke my heart one day though when he said he's accepted that he will lose both his parents by the time he is 30.  His dad is in poor health too and was hospitalized recently.  I had no come back for that because I believe he's right.  I could only reassure him that I would fight to be with him for as long as possible and I wasn't going anywhere any time soon.  What do you say to the people you love the most who are afraid of losing you?

 

I've been particularly frustrated with chemo brain.  I feel like an idiot and stupid half the time.  I havn't been able to find much of anything about it and how to counteract this side effect.  I'm pursuing a masters degree and had to drop a class in the fall because I didn't I understand a word I was reading.  I seem to be a little better with the class I'm in now, but still can't remember things and multi-tasking seems to be a lost art now.  Does anyone have any info on this?  It seems like adding insult to injury to lose your mind as well as the body going south on you.

 

How are folks dealing with work?  Are you on reduced schedules, disability?  I was put on a part-time schedule and disability that I'm trying to have reversed since this drug combo isn't making me as sick as the first.  I'm afraid of being pushed onto long term disability and out the door before we're financially ready for the move and before I really need to since in theory I'm suppose to be living for quite a while.  This has caused me no end of stress.

 

Take care everyone

 

Advice from a wolf …

    ~ Trust your instincts ~ Stay on track ~ Be at home in nature ~

       ~ Howl with your friends ~ Stand for what you believe ~

      ~ Pack life with good memories ~   ~ Care for and protect your pack ~