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Old 09-11-2012, 04:20 PM   #235
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Calling all stage iv sisters


Hi Ever! Hi Vonny!!

As patients we're part of a team. And what we choose is the result of our gathered expert opinions and our understanding of studies.

I had bld work done ev 3 mnths back in '96. I would compare ea # w/the last time I was time I was tested and w/the normal ranges. In '98 my liver enzymes were "slightly elevated". Docs said, I wouldn't worry about it. 3 mnths later -- same scenario. What could be causing that?, I asked. Lots of things. The statin you take for example. I wouldn't worry about it.


3 mnths later -- same deal. I proclaimed that I was officially worried and asked for a sonogram.

That was approved as something that could be substantiated (to the ever-loving insur co) and that led to the CT scan which led to the biopsy. There were multiple tumors, too many to count, throughout my liver.

I felt great! No symptoms. Healthy and well.



When I was initially dx (in '95) I felt a general hardness in my breast. I could fit this hardness in the palm of my hand. And it seemed to move when I manipulated it. I assumed it was a cyst or the like and would probably require surgery to be removed. It was NOT a lump, a little hard pea or marble as others had described what I should look for in my mnthly self-exams...

I called my gyn who couldn't see me for over a wk. Even though I was concerned! I should have known to push his assistant harder. I learned that after the fact. Sometimes we must speak up. Not yell, but human to human appeal a bit enthusiastically and emphastically. It's okay to do that. It's our responsibility to do that!

I called her back and suggested I move my mammo up a few mnths. She said that sounded like a good idea. She was dispassionate and disinterested I noted.

When I called my Imaging Center they couldn't see me for 2 wks! (I wanted the doc to have as much information as I could gather.) I was increasingly feeling alarmed. My Inner Voice was pushing me. I still felt healthy and well...

My friend suggested I call her Imaging Center. I did, and they said, That's amazing! We JUST had a cancellation! It's for Friday at 4 o'clock. I'll take it!, I yelped.

Turned out to be a 9 cm tumor. The Radiologist was obviously shaken. She did a sono after she read the mammo. She did it twice. Then, she told me to get dressed and meet her in her office.

She told me breathlessly, as I sat across from her, her eyes locked on mine -- YOU NEED A BREAST SURGEON. Ok. Is it a cyst? WHAT YOU HAVE IS A SOLID MASS!!! I wasn't sure what that meant. No mention was made of cancer. But she did offer to call an excellent breast surgeon for me. His name was the same as the one I'd already gathered from friends who'd had need of such of a person.

I never had a lump. Ever. "This" wasn't a lump, a marble or a pea! A solid mass sounded ominious though I had no understanding at the time!

It was then 5 o'clock of 4th of July weekend, 1995. She called and found his office was closed. She turned to me, very anxious, till Tuesday! Suddenly she remembered, I have his home phone number. I nodded. Do you want me to call him? I managed to say, YES. She did and I heard what she said and I was shivering in my boots/heels when I overheard her descriptive words. She turned to me and said, His office is closed till Tuesday -- but -- he will meet you at his office tomorrow (Saturday) if you'd like. Yes!

He opened his darkened empty office just for me at 10 in the morning. I knew I was in big trouble.

I never had any pain. I felt healthy and well, joyful and excited. We'd just seen our 2nd dghtr graduate from Law School, sold our 26 yr old house and found a new home closer to the city where my husband worked. Life was grand... The contracts were signed on Wed and Thurs. And then, our lives turned upside down...

You've all been there. You know...

Somehow we keep putting one foot in front of the other and move onward, forward and upward... as clear-headed as we can possible manage, cause we understand our lives depend on it. God bless you all!

Love and Light,
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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