11 December 2012

A Tribute to Sheila...


Four years ago today, I was in Houston for my mastectomy that removed that nasty Breast Cancer from my body. As far as I know, I am still cancer free & I should be celebrating this CANCERVERSARY but my heart is not in it. I just found out that my friend Sheila passed away yesterday from this @%&*#@! disease. She lived in Illinois, and we only met once for dinner in San Antonio, but we drew close because of an online friendship at the Her2 Support Forum. Sheila was one of those special people who puts others needs before her own. Even though she was dealing with terrible burdens herself, she always lifted up and encouraged those on the forum that were dealing with much less.

MY DEAR FRIEND SHEILA
HOW WE "MET":

In January 2009, just before starting my own chemotherapy, I spent one evening on the HER2 Forum. Most everyone that posts has a "signature" - a description of their unique cancer story and I was searching for others with a similar diagnosis to mine...how were they doing...will my future be similar to theirs? That's what you do when you learn you have joined the Cancer Club - you look for a crystal ball. Immediately, Sheila's signature caught my attention. She was diagnosed in 2002, and seemed to be one of the "lucky ones". Her cancer was caught early in her left breast by mammogram ...Stage 1...0.7 cm (barely 1/4 of an inch)...no lymph nodes were involved. Okay I thought, my tumor was 2 cm with no lymph node involvement, found the same way and in the same breast. Sheila had a mastectomy and that should have been the end of it. I also had a mastectomy, BUT WAIT...SHE RECURRED 16 MONTHS LATER?? What happened?? No Herceptin?? Checking the dates, and doing a bit of research, I learned that in 2002, you had to be Stage 4 to get Herceptin. It wouldn't be until 2008 (wow, just one year earlier than when I was diagnosed), and only after many clinical trials later that the FDA would approve Herceptin for Neo-Adjuvant treatment - meaning it was available for early stage patients to prevent recurrence rather than treat it!! Approved for people like me...

That night in 2009, I had been dreading my chemo and feeling sorry for myself. Reading the rest of Sheila's signature (I have copied it below, with her prior permission), I couldn't believe all that she had been through. I realized that because the fate that my cancer was diagnosed 6 1/2 later than hers, my life might just have a different outcome...and I cried for Sheila. It was a shock and my attitude did a 180. Friends have told me they couldn't believe how well I handled my cancer. What they didn't know was that Sheila was my secret weapon.  From that day forward, I felt a special connection with her and we became friends. I consider it a blessing that I was able to meet her in person at a dinner in San Antonio when she was there for the Breast Cancer Symposium. I sat next to her and we had a great evening filled with laughter and great stories. I was able to tell her how much she meant to me and how she unknowingly helped me endure my treatment.

For 2 months I have known this day was coming. Sheila's body could not tolerate any more punishment and she entered into hospice in early October. That didn't stop me from hoping for a miracle though. This has been a very hard year. Sheila has joined Brenda and Courtney, among other HER2 angels this year. These women leave a legacy behind to be admired. I have a 10% chance that my cancer will recur. This statistic equals what I was told before my original biopsy...I had a 10% chance that the microcalcifications would be cancerous. I do not know if I will recur, but if I do, these women will once again be my mentors by the way they lived their lives. I only hope that I will be as strong as they were. 

Brenda and Sheila
SHEILA'S HER2 "SIGNATURE" :

"Be kinder than necessary, for everyone you meet
is fighting some kind of battle." 
(Sheila's favorite quote)

Hugs & Blessings,
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications) 
Core Biopsy 2/22/02
Left Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant 
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29/08 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin 
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments 
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression 
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin

A LINK TO A STORY IN SHEILA'S OWN WORDS:

http://rushinperson.rush.edu/2011/02/16/cancer-survivor-rush-patient-feels-truly-blessed/

5 comments:

  1. A lovely tribute. I recognize both these faces.

    I wasn't allowed into the Herceptin trial by my insurance company (United Healthcare) back in 2000 when I was diagnosed with a 1.7 cm. tumor that was ER-PR- and strongly HER2+ with 3 postive nodes with another tumor growing off one of those nodes. I was 45 and all the pathology scores were as high as they measure.

    Everything I read made me believe I would recur in 2 years time and die because I did not get Herceptin. That tumor never imaged on a mammogram and thre were no clear margins in that left breast after an excisional biopsy.

    A bilateral mastectomy, Adriamycin with Cytoxen then Taxol seem to have gotten me this far.

    HER2 isn't the whole story and so many of us who did not receive Herceptin wonder if that "other shoe" will drop. It has dropped for many who did receive Herceptin.

    There's still so much we don't know about this nasty disease that can recur many years later. So many wonderful people gone too soon.

    ReplyDelete
  2. A lovely tribute to Sheila Alice and its nice you mention Brenda and Courtney too, they will all be missed so much along with too many others who have passed too soon from our her2 family. x Tricia K

    ReplyDelete
  3. Lovely tribute Alice..They all will be missed :(

    ReplyDelete
  4. A beautiful tribute to your friend Sheila. My sincere condolences to you, to her family and to all those who were blessed to call her a friend.

    ReplyDelete
  5. What a lovely tribute to such an amazing woman. Mom told me before she died she wanted to be remembered for how much she helped others even through this terrible disease. Thanks Alice for a beautiful tribute to my Mom.

    ReplyDelete

I would love to hear from you, please leave me a comment!