Stage IV - How can i do this?

chriskaput

I have diagnosed with mets to the liver, bones and lung, a recurrence after 3 years NED.  The liver is the focus with the treatment now, the lung and bone spots will most likely dissappear with treatment since they are so small, per my onco.  I've been on chemo for 2 months now. Did this back in 2010 too.  My whole quality of life has changed.  I am not working ( don't have the energy for it), I cannot exercise (Zumba was my favorite) I barely want to leave the house.  If it's not because the stomach issues and me wanting to be near a bathroom at all times it because I just don't have the energy!  This chemo has made me so anemic and hemoglobin is real low.  

Any other ladies here stage 1V with the knowledge that treatment will be very long and how do you deal with that knowledge?  I cannot imagine feeling this way or having to go through this for much longer. This is not the quality of life I am used too.  Yeah I can slow down, but I want to live and enjoy too.  I am so depressed, angry and am basically shutting everyone out.  My co-workers and friends want to see me but i am never up to it. My family tries to cheer me up but my response is I will never be happy again.  I need support from this community big time!  It's not the same talking with others who are not going through this.

Thanks for listening.

Chris.

SIROD

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

lmoneill2012

Let me start off by saying

Let me start off by saying that I'm sorry you are going through so much difficulty. Having gone through chemo for 8 rounds I know how badly they can make you feel. I sympathize with you. As far as 'how do you get through it', all I can say is that that's often the question many of us ask ourselves. But, lo and behold, we do. I found great comfort from the support system around me. Just having someone say "awww" when I wasnt feeling well helped. Try to allow ppl to comfort you. I think we all are made of strength that we cant even IMAGINE we have. Good luck to you and *hugs*

Linda

McMarty

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

New Flower

Hi Chris

I am very sorry too, however please believe in yourself. it is temporary and you will be back.Please never loose hope 

unfortunately, i was too diagnosed with mets to my bones 1 year ago after 4 years with NED. I do not if you remember me from your first time around. 

Since my stage IV diagnosis in 2012 i was on Chemo Xeloda (oral medication) and now participating in clinical trials. I have been keeping my job, however it has become very hard. I have to take vacation days, which I accured  for 2 years to get through this treatment. I do have good and bad days, as everybody who is going through Chemo. Of course my new normal is different from pre-cancer lifestyle, still I am enjoying life

please come back when you have energy and stay connected. We are here to help

Hugs to you

New Flower