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Friday, October 21, 2011

Metastatic Cancer and Breast Cancer Awareness Month

I've been meaning to write about this for some time.  You see, October 13 was Metastatic Breast Cancer Awareness day.  I wanted to digitize my wedding picture to start it...You see, October 13 is also my wedding anniversary.  We were married in 1990, and in February 1993 I had my daughter...then in November of 1993, I thought I felt a lump but didn't go to the doctor about it...because no on in my family had ever had breast cancer, and why should I? I was only 33.  In April, 1994, I was diagnosed with breast cancer. It was a 3 cm tumor with one lymph node involved..which I think made it stage 2B.  It was much bigger than they thought.

Then in December 1997, they found micro-calcifications on the same breast which had the tumor.  I had a mastectomy and discovered in January 1998 that there was a metastases to my bones.

I often say that I had the word "remission" because that gives the uninitiated the concept that maybe you're cured.  It just means that there is no discernible disease.  Once you are diagnosed with mets, you're stage IV and no matter how "good" you look and how your blood tests come back...it is considered a chronic disease and it can re-appear quite some time later.

Like 14 years later.  Like me.  My numbers are up and I'm hoping that the current Tamoxifen treatment will work.  I really have trouble thinking about going back on chemo...I'm still struggling with the nerve damage I got from this last course of treatment which lasted 9 months.  I'll probably never run again.  Heck, I'd take that if I could have more time.  I'd like to see Meg graduate...I'd love the thought of seeing her married....or started on her adult life.  While others are looking forward to playing with grandchildren, I'm just hoping to make it that far.

Its an odd thing.  Currently,  there's a trial being offered for people who have metatastic breast cancer at the Roger Williams Medical Center in Providence, Rhode Island.  They are testing to see if modifying T-cells (the cells in your immune system which fight the baddies like cancer) and modifying T-Cells and using Interleuken-2 with it will work.  I'm tempted.  I'm really tempted.  But I'm also afraid.  I don't know if trying to pursue other treatments would work.  I'm not sure about traveling from Ohio to Providence, even though it is within 2 hours from where I used to live and I'm sure I could do it.  What if it didn't work????  They talk about biopsying your tumor...well...it's in my bones...I suppose they could go after a biopsy on my shoulder, and maybe the sternum...but the others, the ribs and the vertebrae, well, they're a little tricky...and I'm not really sure how easy it will be to get to the spot on my pelvis...

Sitting and waiting in never-never-land....the word "remission" and "chronic" is beginning to sound better...at least you're still alive.

I regret that most of my married life, my poor husband has had to live with someone fighting cancer.  I am saddened by the fact that my daughter doesn't remember a healthy mother...one who ran...and hiked and did a lot of really physical things.  I'm even more saddened by the fact that she has to be afraid that she's going to get cancer...or that I'm going to die while she's in college.

But I'm alive.  I will continue to fight.  I hope you will too.


What is the Army of Women?

A program of the Dr. Susan Love Research Foundation, the Army of Women initiative is dedicated to recruiting one million women of all ages, ethnicities, with or without breast cancer, to sign up and participate in innovative breast cancer research studies.  After signing up at www.armyofwomen.org, members are then contacted via email blast about new studies seeking volunteers. They can either sign-up for the studies online, or if they do not qualify, they are encouraged to forward the information to a friend or family member. Every woman over 18 is welcome to participate, whether a breast cancer survivor or someone never affected.   There are currently more than 20 breast cancer studies seeking volunteers through the Army of Women.   The full list of open studies seeking volunteers like you are listed at:www.armyofwomen.org/current.

For more information, visit www.armyofwomen.org.

7 comments:

Gerrie said...

Oh, Lisa, you are so brave to talk about this. I think you should at least talk to the folks running this trial to see if you are a viable candidate. It doesn't mean you have to commit, but what if you miss out on something that could work for you? You made me a little teary eyed again tonight, but that is ok. I will continue to keep you in my thoughts and prayers.

Linnette said...

Lisa, thank you for sharing and educating me about the world of cancer and some of the things it entails. You are always on my prayer list. Thank you for sharing your gifts and talents. I am currently watching Stitched the film which reminds me of you and your feelings as you first entered the world of Batty Binders. I can so identify as I listen to the people on the film speak of traditionalists and art quilters.

Sherrie Spangler said...

Lisa, this must have been a hard post to write. You're very brave to put it out there in front of everyone. You're truly an inspiration, so keep sharing and know that you're in our thoughts. And happy stitching!

Susan Walen said...

Thank you for sharing your story, Lisa. You're a brave dame and a darned good writer. I wish you lots more Good years of quilting, mothering, and loving as you battle this chronic disease. (I'd also like to second Gerri's advice.).
Sue

Michigoose said...

Sherrie, it is much harder to live it. Writing is the easy part...it doesn't include the discomfort (ok, pain), annoyance of not being able to feel your feet AT ALL, and struggling to figure out what is the best course for you and your family.

Thanks, Susan. I don't think I've ever been called a "dame" (cue the music)..."old bird", something which rhymes with witch...and a few others, but. . . and thanks for the kind words about my writing. I love to write but sometimes I wonder if I'm REACHING anyone. :)

Gerrie, and Susan, I put the application in yesterday.....scary scary scary. I felt I had to talk to my husband since I'll be gone at least a month once they prep the cells. IF I am accepted. Big "if."

Thanks Linette! I need every drop and am so glad you enjoyed "Stitched." Jenna did a great job!

Jeanne Marklin said...

Hi Lisa,
Your post is well written as Sue says, and hard to read, because it's always hard to hear about a long struggle. I hope you'll keep writing - it surely helps others with the disease, and educates women about the importance of self exams. My thoughts are with you and your family -

Sandra said...

Not to be flip, of course it's often hard to live with someone fighting cancer and trying to help them fight but note the use of 'often'. It isn't always hard and more often than not, it is wonderful to have your loved one around.
Speaking as a daughter who's been in the fight for 4 years, I wouldn't trade a minute.

... mostly it is hard to feel so powerless on both sides of the fight and it helps to share emotions, like this.

Don't 'regret' the situation that is not your fault, just continue to focus on changing what you can and loving them. Again sounds trite, and I'm not talking rainbows but you are still creating, sharing, living and loving.