Introduction

mehitzel

Hi, everyone.  My name is Martha and it is the middle of the night and I just found this forum.  I was diagnosed with triple neg. BC in Nov. 2008 and have been in constant treatment since.  I had neoadjuvant chemo, double mastectomy with positive nodes, radiation and chemo, surgery to repair damage from the radiation, more chemo to prevent mets, and then diagnosed with mets to spinal cord, bones, and lungs in March 2010. My oncologist started me on cisplatin/etoposide, but I had trouble tolerating all of the fluids they had to give me with it and I also developed what my onc thinks is skin mets as a result of lymphatic invasion. At this point my onc. mentioned hospice to me, but I just wasn't ready, mentally to give up hope for more time.  He started me back on Abraxane/Avastin, the combo I had been on when I first started with him.  It is the combo that got rid of the cancer in my breast, but not my lymph nodes.  He thought we would try this again because it had been at least partially effective.  I started the first week of this treatment and although the side effects were tolerable, I did feel just generally icky and very tired.  My rash got worse during the week and I was having more pain in my sides and back.  I also have a lot of problems with swelling.  Whenever I am active at all, my left leg swells up into a tree trunk.  I was due for my second dose of this chemo regimen this past Wed.  My youngest child was due to graduate high school on Thursday.  We had family coming in for the week and were planning a lot of fun activities together.  I had a bad night Sunday night and spent a lot of time reflecting and decided that it would be better to stop the chemo which didn't seem to be working anyway and contact hospice.  It has turned out to be the right decision.  It is such a relief to know I will not have to do chemo ever again!  I also can't believe how quickly they got to work making sure I would be able to enjoy my son's graduation and my time with my family this week.  They scheduled me for thoracentsis on Tuesday and Wednesday to remove pleural effusions.  This helped with my shortness of breath and my back pain.  They had a lymphedema massage therapist come out Tuesday afternoon to do a massage.  It didn't really help my swelling, but sure felt nice.  They got me a wheelchair which I haven't had to use, but now have available for when I do.  And, I am keeping my pain under control with liqud oxycodone.  All this in the first week in hospice.  I had a wonderful week with my family and totally enjoyed my son's graduation.  I feel so confident that I made the right decision in choosing to do hospice at this time.  I have not given up my fight, but have changed the focus to fighting for the best quality of life for the time I have left.

 I have read through some of the recent posts in this forum and am trying to become familiar with all of your names.  I was wondering, has there been a thread where people just introduce themselves and tell a little about thier journey?  I think it would be helpful to members that are new to the forum to feel a little more comfortable here.  Just an idea.

Thank you in advance.  I have great family support, but am often awake in the middle of the night and come to this site to help me get through until I can go back to sleep.

 Martha 

ElaineD

Hi Martha. So sorry to hear of your problems-but glad you have been able to make a decision with which you are comfortable. There isn't really a thread for introductions in this part of the forum. However, you are more than welcome to join us on the stage 1V section, as you are clearly one of us......By the nature of it, it's a much busier section, and so you will get more interaction there. Someone too may be able to offer advise-and we will all offer support. Hope to see you there,x

konakat

Hi Martha -- I have heard wonderful things about hospice and the strong sense of well-being felt by the women who've started hospice care.  I'm happy to hear that it is giving you the best QOL for this stage of your life.

In the Stage IV forum there is a thread titled "New stage IV posters...".  There you will find some info about many of us.  Please pop by and say hello.  Best wishes,

Elizabeth

Member_of_the_Club

When home hospice treated my mother (who had brain cancer) I felt that was the first time she had treatment for ALL of her medical needs.  She had top notch doctors during her illness, but they still never matched the care and attention she received from the hospice folks.

Good for you for calling them in.  And remember they are there to serve your entire family and can offer them a great deal of knowledge and support as well. 

getwell

Dear Martha,

   I am so very sorry that you have been through so much in your life. I can't imagine how hard it must have been for you to decide to go for hospice care.Sounds like they are taking good care of you. My words sound so empty. I guess there are none to adequately explain how this cancer changes your life and what a terrible disease it is. You are a brave woman.

Hugz to you,

Pat

mehitzel

Thanks, evearyone for your notes.  I went today to have bilateral pleurex drains put in so we can drain my pleural effusions as needed at home.  My blood pressure was running pretty low, so they weren't able to fully sedate me.  It was a bit rough of a procedure, but thankfully is done now.  I am awake though now and very sore across my back where they have been put in.  I live in Arizona and in the morning go up to Flagstaff with my youngest son for orientation at Northern Arizona University. Our middle child, also a son, already lives in Flagstaff and we will also be helping him to register for classes at the community college.  It should be a fun three days spent together.  I took my oxycodone and hope it kicks in soon so I am rested to go in the morning. 

Anyway, just wanted to say thanks for everyone's kind words.

Martha 

konakat

Hi Martha -- sounds like a great 3 days!  Have a wonderful time.  Hugs,

Elizabeth

getwell

Thinking of you enjoying the time with your sons.

Hugz,

Pat