Archive | May 2010

Still In The Picture

Walking into OUR future together!

“Still in the picture”.  This is a phrase many of the women I met this weekend used when they held up their photo of  “What Herceptin means to me”. Herceptin is a drug that we all received during our chemo therapy regimens for Her2Neu+ breast cancer. The company that called us to Chicago for the patient advisory council had asked each of us to bring along a photo of how this drug has impacted us. Most of us brought along a picture of ourselves with our family members or a photo of ourselves doing something that depicted us enjoying life. My picture was of me and Tim holding hands.  Another woman brought a picture of herself on a zip line in Costa Rica.  Another woman’s picture was of her newborn grandchild holding onto her finger. All of us said that this drug gave us a new lease on life and that it meant that we were “still in the picture”.  For me it meant that as our children fly the ‘nest’ each year now, soon it will be just me and Tim and our future together. This drug means, for me, that I would be in that future! It means that I am ‘still in the picture’, not forgotten, not gone, like so many her2neu + breast cancer patients in the past.

If you have ever seen the Lifetime television movie called Living Proof , with Harry Connick Jr., that movie is about the making of the drug Herceptin and the doctor who fought so hard to bring it to ‘Her2 positive’  breast cancer patients who were dying before his eyes. Most of them young women, it is a powerful and intense film. It took 10 years to develop, test and get FDA approval for this drug. Now they are trying to determine how best to address & educate patient needs, oncologist’s understanding and delivery methods of this drug.  This was the whole purpose of my weekend in Chicago this week.  15 patients were selected from all 4 corners of the country, all who are at various phases of treatment, some pre – treatment, some 3 months in, some 6 months in, some 11 months in and some, like me, who are 5 months out of treatment.  Together we discussed brochure and booklet and web site information, how it is displayed, how it is worded, how best to get it into the hands of patients, how best to educate doctors and what some of the new advances in drug development are!  (Sorry, I am bound by a confidentiality agreement on what those are 🙂 ) Suffice it to say that I felt it was a really productive weekend and the whole time I enjoyed being treated like royalty at one of the premiere Chicago hotels on Michigan Avenue!

Complimentary slippers bedside

Everything from limo service from the airport to cushy slippers at my bedside, it was fantastic!  I made some new friends during the process too. Hearing their stories and seeing their fight and determination was an inspiration to me as well.  We did a little site seeing & shopping around town too.

Back to reality this week, and tending to Keith who gets his wisdom teeth out today and tackling my 50 (yep! 50!!) outstanding orders lined up at my studio door. I’ll be staying home for a few days now.

Chicago by day

The view from Trump Tower's 16th floor

Ferris Wheel - Navy Pier - Chicago

This entry was posted on May 24, 2010. 1 Comment

Patient Ambassador

I rarely post more than once in one week, much less in one DAY! But I am so excited about this opportunity that I simply had to share it with you!

Here is how the story started….As you know I have started counseling with Network Of Strength as an on call hotline peer for breast cancer patients.  It is going very well and I do this about 4-6 hours per week from home. (As a side note, one of the very rewarding aspects of this job is to help people who do not speak English but who have been diagnosed with breast cancer and need help either emotionally, financially or with treatment education.  Network of Strength offers a translation service by where I access a translator over the conference call feature and then am able to communicate with the caller in virtually any language.  It’s pretty neat!)

Well,  last week I was contacted by our affiliate office who had been contacted by a medical research company who was arranging an advisory board for one of my chemo drug companies.  This company makes Herceptin, which is a targeted gene therapy for women with rare Her2neu positive (+) breast cancer.  Because I had this type of cancer, I was asked if I would apply, and so I did and I was accepted to be one of their patient ambassadors for the next year. Next weekend I will travel to Chicago to take part in a focus group of advisers discussing the doctor and patient education materials used by this company.  It will be a unique opportunity to learn about the development and use of this drug, which just 6 years ago was only used for women whose cancer had already metastasized to other parts of their body.  Now,  it is also used for women with early staged her2+ breast cancer in an adjuvant setting, and is so far proving successful in keeping metastasis away! Along with being an all expense paid trip I am also paid for my time. 🙂  Who knew cancer could bring so many rewards?  I would still never have wished to have gotten breast cancer but if I am able to benefit the next woman who calls that hot line or the next woman given the diagnosis of her2neu+, then I feel as if it wasn’t all in vain.

This entry was posted on May 15, 2010. 4 Comments

1 Down, 3 to go!

Last weekend was a milestone for our family as we graduated our first (of 4 children)  from college. Kyle, now a Finance graduate of James Madison University, will be moving to Charlottesville, Virginia  in August to begin his new career. We couldn’t be more proud of him! Here is a little video I made in his honor 🙂 Enjoy! (Turn up your speakers!) Click the box below or HERE

Typical

Last weekend was our son, Kyle’s, final acapella solo . He graduates from college tomorrow. Where did the last 21 years go?  Seems like just yesterday he went to his first day of preschool! Makes a mama & papa a little sad and proud all at the same time!  Here is that performance. Enjoy! If you can’t view the video box below , click HERE .

Unrelated, of course, is my physical therapy, which is ongoing now for my back numbness. So far I have had 4 sessions and will continue  as they attempt to loosen up tight bands of muscles along my spine &  possible scar tissue from the reconstruction I had.  It’s cramping my hectic lifestyle having to go twice a week,  but at least while they have me in their hands I am educating a few women (the physical therapists) about breast cancer!   They have loads of questions and that’s all it takes to get me started!  I am also in full swing with my peer counseling through Network of Strength now. For about 6 hours a week I am answering hotline calls from home.  It is rewarding and is turning something tragic into something good.

Mothers Day is Sunday and I hope to get out on the river to kayak, something we haven’t been able to do in over 8 months. Now that Tim has his own kayak, we are looking forward to many trips out this summer! Happy Mothers Day to our moms and all you mommies out there!



This entry was posted on May 7, 2010. 2 Comments

Avon Walk – thank you for your support! I made it!

Together Curtis, Rachel and I raised over $7000 towards the Avon Walk for breast cancer!!
I created this video montage for you to view of The Avon Walk for breast cancer my son, his girlfriend, my chemo buddy and Tim and I walked in last weekend. Enjoy!

—->   Music and Video version HERE (turn up your speakers)

If you have trouble viewing, you can view the photo gallery HERE.

Rachel and I finished together this year. Last year she walked alone in my honor while I was in chemo.

This entry was posted on May 4, 2010. 3 Comments