Stage IV - How can i do this?

One Day At A Time...

I am so very sorry about your diagnose.  I have a very indolent kind of cancer and have been stage IV since 2000 when 2 lesions were found on my ribs.  Then the hormonal drug therapy I went on gave me 8 years of NED.  In 2008, it came back as widespread pulmonary and pleural metastasis along with a pleural effusion.  I did hormonal therapy for nearly 4 1/2 years and in February, I went back to chemo as I had no other option.  It was my first chemo in 18 years.  At diagnose, I did chemo along with a mastectomy with lymph node dissection in 1994 (no sentinel node biopsy back then).  I did radiation when another tumor was found in 1999 but in the axilla.  I had a 2nd lymph node dissection at that time also.  It was a regional recurrence.

Since 2007, I take a chemo drug, Methotrexate for an autoimmune disease "uveitis".  I have taken this in pill form as well as injections.  I does help in keeping my blood counts in the very low range.

How do we do it, one day at a time.  I know people will say to me "your hair will grow back when your finish".  Trouble is I won't be ever finished.  I don't want to go into it so I just let the statement stand.  

I am anemic too.  I had my first of five iron infusion yesterday.  I had iron about a month ago.  My WBC are 2, so my plans of helping out at the "end of the year" at my former job is out of the question.  This time I had to leave the job I held for 26 years and I did love it so.  I worked during my diagnose, my chemo, my rads and whatever else was thrown at me.  I thought I might be able to hold on this time.  Fatigue was doing such a number on me that I had to leave.  It was discovered that I had two bleeding stomach ulcers that I was hospitalized for and that probably was the culprit on why I was so tired and had to stop working.  My oncologist kept telling me, that at this time, it wasn't going to get better so for me it was a good choice in leaving.  

My life has changed remarkably.  I am grateful that I can have treatments in spite of it all.  My first ct scan after starting chemo showed my tumors regression in the left lung which was the one we were concerned about but it showed regression in my right lung too.  The rest of the areas were stable.

Right now for me, it's one day at a time.  I now know that I can't do it all like I once did.  I do what I can.

I wish you lots of luck and I do hope the other ladies who are stage IV will give their opinions on living with stage IV disease.  

Best,

Doris

Hi Chirs, 
I've been Stage

Hi Chirs, 

I've been Stage IV since my recurrence in 2009 and there have been some really hard times, that is for sure.  I had chemo (FAC) for the first time in early 2012 and then started another round (Paclitaxel) early this year, plus some radiation and surgery.

There have also been some really good times too!  In between chemo treatments, when I am on hormonal therapy, I feel better (not great, but better)  And I've seen things I thought I'd never get to see.  My middle child went to his first dance, I took my oldest to get his driver's license yesterday and I even got to go on a cruise and swim with dolphins.  I was the fundraiser for the Junior High choir and put together a 'Hillbilly Gala' that was a hoot!  I think that's how I get through it.

I HATE couch days.  Those days when I am just 'useless' but I lay there and they pass then I get out a little, then a little more and then WAY too much!!

I HATE when people say 'you are so strong' or 'I don't think I could do it'  I'm not strong!  I'd get out if I could!  I don't have a choice, I'm stuck here with this mess!  I do it 'cause I have to - there's no way out!  But I make the most of the 'better' days, that's for sure.

One very important thing I learned EARLY on was to do what I LOVE.  Early on my husband would encourage me to rest up, save my energy, be careful.  Don't do any fun stuff so you have the energy you need for all the 'house-wifing'.  It translated to me 'don't do what you LOVE so that you'll have plenty of energy for the stuff you HATE!  Where is the HOPE in that!  That will kill your 'will to live' so fast.  We have both learned to do what brings joy and hire someone to do the rest or just let it go!  Now he tells me 'do something that brings you JOY today'.

That's the best advise.  There are dust bunnies screaming at me under the TV, the boys do their own laundry, we eat out more and sometimes (usually) there are dishes in the sink, but I'll meet my good friend for breakfast in the morning.  The best of me goes to something that brings me JOY.  Then I usually have more energy, more hope and I've found that long lost 'will to live'.

Hugs to you!

Marty