Tuesday, December 31, 2013

Too many souls were lost in 2013

It was a tough year for women with metaplastic breast cancer. We lost a number of women in our group and countless more we never met. Here are a few of our own we want to remember:

Nancy Manguso: I never spoke to Nancy but I’ve spoken to her daughter Beth many times.  Nancy was an inspiration to Beth and to many of us as she endured difficult chemo regimens and participated in trials. Beth worries about how she will manage without the love and support of her mother. She knows her children will have slightly lesser lives without the opportunity to meet and learn from their grandmother. And for us we know that without women like Nancy there will be no scientific advancement.

Brenda Perry: Brenda had an unshakable faith. She was stage 4 long enough to endure multiple chemo regimens and even as she learned the last one didn’t work and prepared for the next, she believed everything would be ok in God’s hands. She said she rarely got down and if she did she would simply pray and in a bit she would feel much better. There was no time for pity in Brenda’s life. She left behind grandchildren, two daughters and a loving husband who posted this news upon her death:

“My wonderful and beautiful wife Brenda Perry 's battle with cancer came to an end this morning. She is in God's hands now.I will miss her for eternity.”

Janet Famous-Wettig: Janet was the mother of two grown children. Her daughter was a college athlete, playing La Cross at the University of Cincinnati. She was an inspiration to the young women on the team and looked forward to when her daughter came to town to play an area university. I always wanted to meet Janet but I had thought there was more time. She was the first woman to friend me when I joined the online support group. I continue to see photos posted to her page by her many friends who miss her dearly.

Dr. Mindy Green; Leah-Anne Marshall; Mary Chadwick: These ladies were all so young. Mindy had offered advice on lotions to use for radiation. She was an example to us all on how to handle cancer with dignity. Her facebook page still has a beautiful photo of her with her adorable little blonde curly headed daughter. Leah-Anne was still using her wedding photos on her page, that’s how newly married she was. And Mary’s last post was a photo of her little girl standing next to Santa. Each was so full of life and I’m sorry we didn’t have more time together but I’m even more sorry for the little ones they’ve left behind and the young men who have lost a lifetime of making memories with these beautiful ladies.

From Monica:

Pam Hansford Ogletree: Pam was such an open heart. I remember I was new to the board and was headed to MD Anderson. She was already there and saw Dr. Moulder in the cafeteria line. She told her that I and Ilana would be there shortly. When I saw Dr. M she was impressed with how close we all were...Pam barely knew me but treated me like a sister! I miss her.

Dr. Mindy Green: Mindy was an inspiration to me. She was so amazing and had such faith. I am still devastated that she is gone. I didn't even realize she was stage 4 until she was very sick...so I never got to tell her how inspiring she was to me.

Andrea Blake: Andrea was THE most positive person I have ever known. She didn't feel sorry for herself for one possible second. She was always a beacon of light and a treasure to know.

From Stephanie:

Andrea Blake: She was a RN with experience working neurosurgery and most recently in the ER. She's from Nova Scotia. IYears ago she also worked off shore on an oil rig as the nurse.

Mom to Jackson and Kennedy (teens). Kennedy must have just finished high school b/c she just got accepted into a four year nursing degree program. Andrea was so proud.. Very loving toward her kids and friends. Loved by many friends and was a part of a big family that meant the world to her.

As an ER nurse she was the type of person who was ready for anything and everything. She accepted and loved people. After her cancer diagnosis she refined her ability to keep negative things out of her life. She tried very hard to see the positive side of things. One of her blog pieces (the one I like the best) she listed all the terrible negative things about cancer and then discussed how she was able to find the positive in that very bad thing.  She would say "I'm working on being more Zen about that" if there was an issue that triggered impatience or hostility.

And lastly, she was a music lover. Especially the blues. I mailed her a package with about 20 CDs of blues music about a week or so before she died. I hope her kids are listening to her kind of music

Amy Leader Scott: Nicola Jiggle; Doreen Austman; Wendy Croft Salinsky; Michelle DiGiovanni Ivers: I wasn’t fortunate enough to get to know these women but their loss is still felt amongst the women in our group. We know that even though our time together was short and only superficial and from a distance, each of these women made their marks on the lives of the people who loved them.

And, the world is a lesser place without them all.

Sunday, December 1, 2013

The thing about Metaplastic Breast Cancer

It’s December and so it’s that time of the year when women around the world begin to consider their New Year’s Eve toasts. Some will “wing it” while others put pen to paper but most are preparing to declare their victory, to use the “S” word and put an exclamation point on 2013. “F U Cancer! I win! I’m a survivor!” Will ring out across the land.

Sadly for 30% of these women, the words will be spoken too soon. There may be years between now and the day they realize the “S” word does not apply to them but for now they will declare
themselves victorious.

metaplastic breast cancer
But the thing about Metaplastic Breast Cancer, the thing is…. It comes back… “early and often.” And to be sure there are MpBC women who declare their victory too soon but there are even more of us who know better, more of us who quietly cross our fingers and do the sign of the cross  because we are waiting…. waiting for the other shoe to drop. We know all too well that there is no victory, no “S” word for us, not yet. We whistle past the graveyard hoping to tiptoe into the next year unnoticed by Metaplastic Breast Cancer.

My first diagnosis came in Feburary 2012. By the end of September 2012 I was done with surgeries, chemo and radiation. I was a mere ten weeks out, still visiting my support group, still waiting for the short curly hair to grow out, still wondering if the chemo fog would ever lift. I barely had time to consider how I would define survivor when I found a new lump Thanksgiving weekend. It took nearly a month to get to the doctor, schedule the scans and have a biopsy done just two days after Christmas. On New Year’s Eve, I was still waiting quietly for the pathology report… crossing my fingers and sign of the cross.

And, the same was true for many of my metaplastic friends. While I quietly waited for my results women in our group silently did the same. When the diagnosis came back “more MpBC” and I told the others of my fate, many more stepped forward to share their news as well. Two young mothers, a few more women under 50 and a few of us with college-aged children all on our second round with this disease.  Some of us were luckier than others with the new tumors still confined to our breasts, some not.

So as the year closes out, it feels like a parade of women in our group (many first diagnosed after me in 2012) are still in treatment for their second and sometimes third time. Metaplastic Breast Cancer is considered chemo-resistant and some studies show recurrence rates (5yr DFS rates) at nearly 50%. It comes back quickly, and boy-oh-boy do we know that. There is no time to declare victory, we will not rush to judgment. There are no blowing horns, we are quiet, silently listening for the other shoe……

To learn more about Metaplastic Breast Cancer go to http://www.metaplascticbc.com
Gloria Gaynor - I will survive