Need just some hope

Paul, I know how you are feeling, as a relative.  I hope that what I am going to say does not bring sadness but I must say that my mom went to MD anderson for a third opinion and they had the same answer.

Paul, now you and Susie will know you can have confidence in where you are at and you needed that trip to Dr. Carey to come to that conclusion although I can only imagine your disappointment that she couldn't whip out some miracle chemo.

don't know how long, but we are doing methotrexate into the shunt along with an oral (begins with a T) that they've had some luck with at making other antiBC chemos more effective.  Doc is also looking at some tomotherapy.

Hello my friends, this is Zen.(Paul)..Susie's husband.  I just wanted to let you know I don't believe in STATS either.  NOne of you are.  I'm a clinical pharmacist and am thankful enough for a sound clinical background in clinical pharmacy to know that my wife is not a STAT and that at the exact time interval as suggested by literature and the doctors...that they have no way of knowing how long any of us have on this Earth.  So please forgive me, if any of my words sounded to the contrary.
     I want to thank you for the support.  The post about loving one another every day. That hit home. Because that is what I am doing.  The time spent in the hotel after this kind of let down visit.  We just laid in close physical proximity. no need for words. I knew she was crying. silently. She is stoic. Doesn't like to see tears in others. Raised to believe that is a weakness. I am old enough to know you can't change people, only love them as who they are.  But I put my big arms around her and except for the election coverage droning out of the television which was low volume... we both silently cried.  Yet, were where we wanted to be, which is with each other.  Without the children, I would want to follow Susie wherever...and that means wherever.  After all these years of being each other's companion.  Fairly private and not many friends since we've chosen to spend most of our time with one another and the girls.  I don't want to ever see a time when I'm on this planet without her.  But the children changes that.  Therefore I , hopefully won't ever have to do this and with advances in medicine Susie will outlive me into old age.  But my iron promise will be full attention to the children; their well being every second of every day. 
     But noone can predict things like statistics affecting her or me or anybody.  And my prayer lies with Susie in classic form messing up the statistics.  My money (if I had any) would always be on her.  If things go for the worst, I'll hold a promise for the rest of my life, which in this world could end with a car missing a red light and that being the end of that for me!!! Nobody knows and I take some comfort in that.  I hope any of my words offended noone.

Hi Caryn,

Caryn,

They did discuss Parp inhibitors.  All possibilities were laid out.  So, it was good to know there is still a lot of medicine left to go!

Thank you,
PM

Wow CarynRose,

At UNC Medical Center with Dr. Carey, during the discussions of all the different types of chemo and all other things; the doctor said something that hurt yet we had also heard it before; but maybe because of the stress of the trip, the flying, the trying to find the hotel with the rent a car...etc.  The doctor mentioned the 2 years thing again.  Now, I'm a medical professional (pharmacist) but I took every day in class with wide open ears and eyes. I learned everything because I was on a mission. The administration's assistant dean told me before I started that he didn't think I deserved to be accepted to this school and that he would be watching me. To this day, I never could figure out why this guy did not like me, but he never changed; even after I made stellar grades and could definitely handle it.  Sorry to go on that for so long; but it made me study to prove this jerk wrong. So, I learned a lot about things such as clinical trials, also the diversity of outcomes in people who had the same diagnosis.

I don't believe the two year thing.  I realize that may be a statistical "Mode", or Median, or Mean.  But Susie has already almost lived a year under this stage iv metastatic diagnosis and her strength and spirit and will are incredible.  Of course when a doctor throws that back out there, it hurts.  But according to that logic; my Susie would have roughly a year left.  From what I see and feel and can observe in her.... she is far away from the average or the statistical mean.  Therefore, I couldn't give a rat's anal regions for that 24 month thing.  My heart, my soul tell me so.  I pray for a new host of drugs over the horizon which will buy more time. Until the day the jackpot is hit.  If I'm wrong; I"ll live for the girls (otherwise I wouldn't mind going wherever Susie goes), but these girls need us.  I only wish it were me that could be expended.  But I do in my gut feel that many years are going to keep on coming and Susie and so many more with TNBC are going to beat these puny odds.    I hope I've offended noone.  Sincerely, Paul

Pine House

Thank you for your words... they were beautifully put together and I understood every consonant and vowell.  It makes me feel better that others have taken that trip to NC and had just about exactly the same speech given to them that was given to us.  We left feeling foolish.  Barely able to walk out of there straight; weaving a lot although no liquor or intoxicants. We were just in shock.  The tears flowed, and I don't know how to explain this, but Susie is a quiet person; never taught or it comes natural to talk much or share what she's thinking.  So, we went back to that hotel and I laid as close as I could behind her and we just laid our heads on the pillows and stayed that way... in silence for hours. 

We tend to agree with you.  I believe the 24 month thing is not going to apply here.  Our Vandy doctor is good to us.  And we are going to do the best that we can.  And no-one. NOONE. Can tell what the outcome is going to be.  It could be quick. It could be long. It could be spontaneous remission. That I HAVE learned; is something the doctors have no way of telling. We will just treasure one another and our children our beautiful children one precious day after the other.  Thank you for your post.  I think that as good as Dr. Carey is, what she gave us was a well rehearsed talk.  In a way that was good. In another way, we felt foolish. But it did make the bond between us and our doc at Vandy that much more stronger.  And it has gotten the family who wanted MD ANDERSON and the general theory that maybe Vandy doesn't know something.. It has shut them up. For that, all of it was worth it.  I at times was scared of losing my mind at one of them even though out of love...they would doubt our choices and decision to stay at Vandy and go nowhere else.  As if some research center would keep life saving secrets out of the hands of their competitors. But these are family and they are just afraid.  Sometimes forgetting they cannot be scared more than me. 

Thank you so much for your post. 
Sincerely,
Zen (Paul)