One more day in Paradise!

St. Lucia, West Indies

Deja Vu

When I was a young girl, our home was broken in to while we were away. I was too young to understand what had happened or even what was taken from our family, but it had a lifelong impact on my dad.  He never answered the front door while I was growing up without first grabbing his handgun off the tall bookshelf in the hallway and placing it in his back pocket.  He has a concealed weapons license now. When I think of his response to a home invasion, I can't help but think about the cancer invasion that took over my body 3 years ago.

In many ways, something was taken from me that cannot be replaced. Valuables were stolen. Innocence was lost. And I am forever changed.

It is as if after the "break in", I have built a fortress with the help of a system wide alarm which alerts me when even the slightest breech seems to have occurred. Every pain, ache, odd sensation, lump, bump and trigger sets off this extreme panic and need to investigate. Over the last 3 years I have made countless trips to have this or that checked out only to find that it was nothing to be worried about. There was always a logical explanation, well, almost always, and I was expected to go on my merry way.

Yet, somehow, merry is not what I feel like on most days, and dread and worry seem my constant companion. It's a sense as though the "other shoe" will drop at any moment, unexpectedly. That must be what my dad has felt his whole life!

Three months ago while on vacation, I felt a tender spot above my surgical scar. It was a palpable area about the size of an M & M. Thinking it was maybe hormonal, or perhaps scar tissue, I thought I would wait to have it looked at a few weeks later. After all, the holidays were approaching, and I had vowed to have a doctor-free December. I managed to put it out of mind during the Christmas season, but then January came along. Three weeks I finally got up the courage to call the breast surgeon's office.

My palms got sweaty just dialing the phone. Deja Vu set in----that feeling like you've been in that same place and moment before, so real you could actually taste it! When I look back to summer of 2008, a phone call is what started everything. So that phone call made me realize that once again a breech must be investigated and I DO NOT LIKE IT!

They got me in to see the doctor the very next day. I must say that after you've had a cancer diagnosis, they don't waste any time having something looked at, and for that I am grateful.  The doctor took a look and said she could feel it too. Her words were, "but there shouldn't be anything there now". Let's have it ultrasounded. So a few days later I found myself at the mammography ultrasound center and they did the test. A fuzzy blackish area appeared on the screen right at the palpable area of concern. The radiologist called his supervisor in and together they agreed it is NOT a cyst. It does not have distinct borders, yet it is not whitish like scar tissue. In short, they did not know what it is but decided a breast MRI would reveal more.

This waiting and worrying is a killer. It's probably the worst part anticipating bad news or good news or any news that will take the immediate fear away.  In the meantime I stayed busy as a bee, hoping to take my mind off things, but about a hundred times a day I would check to see if the lump might have magically disappeared. Silly, I know, but a girl can hope.

Finally MRI day came 2 days ago, an hour and fifteen minutes of laying still in the scanner with contrast agent pulsing through my veins. And today the result.

"Likely post surgical scar tissue; re-evaluate in 6 months". A sigh of relief. A tear of gratitude. A realization that this is my life now....constant surveillance. Being on guard at all times. Knowing that the invader could strike again without notice, injecting that terror all over again. But today the terror has subsided and maybe for a little while I can feel merry once again.

Changing The Pink Ribbon View

I do not believe things happen by mistake. I believe there is a purpose in everything. One of my very dear breast cancer sisters here (our kids did theater together at the same high school while I was in treatment), inspired, encouraged and cheered me on to better health and to hopeful living these last 3 years. She is dynamic and influential and it just so happens she has connections both political and in the cancer community in the D.C. area. She is a lobbiest and advocate with ACS Cancer Action Network. She is also an events public affairs marketing specialist.

Well, a couple of months ago she took her theater major daughter to NYC for college auditions. While she was up there, a fellow blog friend of mine posted a note about The SCAR Project exhibit in NYC. I texted my friend and told her she should go try and see it while she was there with her daughter. Well, long story short, she did, and she spoke with the photographer who happened to be there that day and she is now going to produce the exhibit here in our Nation’s capitol during the first week of breast cancer awareness month Oct. 1-7, one month before a very important Presidential election in which health care coverages and cancer research funding will be battle ground topics.

Next thing I know, my very good friend who just happens to be wheel chair bound with Cerebral Palsy, was photographed for the project last month! Once again, the project is able to display women from all walks of life and that this disease does not discriminate.  I have been asked to be on the planning committee bringing the project here to D.C.  and so have been part of some of the discussions with other participants and their stories which are very moving. I challenge you to go to the link (click the photo) and view the photos, but I will warn you they are graphic, but not pornographic. They may grip you in ways you hadn't expected. It may feel "in your face" with its raw truth,  but that is the type of awareness necessary to dispell some of the pink-washing that has blinded us to the realities experienced through this disease. Each portrait is moving and tells a story in its own way. Each is unique like every survivor is. The photo of a woman who has her face disfigured was diagnosed and died at age 25 last summer because the breast cancer had metastasized to her jaw bone and finally her brain. Some of the women have had reconstruction, some have not. Something these photos cannot explain is that even a reconstructed breast has no feeling, no sensation, and as real as it may appear, the numbness is a lifelong sentence in the aftermath of most plastic surgery procedures after cancer.

The bottom line is this: Breast Cancer and all it’s pink ribbon marketing and merchandising and funding has been with us for 30 years and yet treatments are still sadly lacking for young women being diagnosed and losing their lives to the disease. In the process they (we) are being maimed in the process, some losing their fertility, and people still view breast cancer as a pink ribbon. The “tag” line of the SCAR project is Breast Cancer Is Not A Pink Ribbon. This exhibit, DVD, book, reveal breast cancer for what it really does to women. More and more frequently it is YOUNG women, under age 40. This project predominantly features women ages 18 – 35. You can see more at The Scar Project's Web Site and I hope you will share with your family and friends. It’s time to stop kidding ourselves and being prudish in this society about what breast cancer is. It isn’t sexy. It isn’t sexual. These are women’s lives we are talking about and it’s time people start viewing it differently so that we can bring about CHANGE in this country to fund research for a cure!

Women with Cancer: The Inequality among us

Herein lies the great divide between the haves and the have nots.

I found this blog post by cancer advocate "Jody" pretty enlightening.
Women with Cancer: Health care: IRL

Christmas Greetings

Dear Friends and Family, Hard to believe 2011 has flown by and here we are in the midst of another Christmas Season, although we’re sure by the time you get this…its more likely to be 2012. We hope that this Christmas season finds your homes filled family laughter, love, and the Spirit of Christmas! The biggest change for 2011 is that we are officially “Empty Nesters” as of August. It seems like just yesterday we had four kids under five years old and our lives were full of diapers, sippy cups and endless hours of Barney and Sesame Street. Move that forward 18 years and we find ourselves with one college graduate and three in college--now that is superb planning! Kyle has successfully made the transition from college student to independent living as a project manager for a financial services company in Charlottesville. He’s only two hours away so we do see him fairly frequently. He started dating a beautiful young lady from Cincinnati, OH , a grad student at UVA. She goes by “Lexie”. They enjoy wine tasting and music, as well as Kyle’s 18 month-old -massive 150 pound English Mastiff puppy, Porter, the "gentle giant". Curtis will graduate with a mechanical engineering degree from University of Virginia in May. He and Kyle live a couple of miles apart and are able to get together on occasion which is nice. He is in the early stages of active job hunting. He’s been fortunate to have had several solid engineering internships with the Department of Defense which he’s hoping to parlay into a job with either one of the larger defense firms or with the government. He is president of his Christian acapella group which released another CD this year. Curt and Rachael just celebrated 4 years of dating this fall. Keith is in his second year at James Madison University (JMU)—the same school Kyle attended and loves it. He also is an Engineering major and is in Air Force ROTC. Keith also is involved with college acapella, and has become the primary “Beat Boxer”, providing vocal percussion for The Madison Project. Keith had an engineering internship last summer with the Dulles Airport Authority and really enjoyed it. Keith is a Belltower Books manager on the JMU campus, and is looking into summer internships in the engineering field for summertime. He and his girlfriend, Sarah, a longtime family friend, have been dating almost 2 years. Kelli is a freshman vocal performance and music education major, also at JMU. She is adjusting well to dorm life with her high school friend roommate, and has amassed dozens of new friends within just a few short weeks. In addition to her rigorous music classes, Kelli is performing with The BluesTones acapella group and thoroughly enjoys the stage. She also helps to lead music in the college church worship team. Kelli works at Panera Bread Company on her holiday and summer breaks, and sells and buys books with Belltower Book company on her college campus during the school year. She and Keith get home every few weeks a visit here, but their absence has left our home very quiet since the start of the semester. Koryn moved out of her closet art/work area this year, and into Kyle’s old bedroom-turned-studio where she stamps out handmade creations most days. Her business, The Taffy Box, has grown exponentially this year, which I’m afraid may end up costing more in taxes as a home business than we realize! Still, the success and growth has allowed for more travel to visit out-of-state family. In 2012 she plans a trip to Hong Kong to visit her good friend who recently moved there, and Seattle where a long-time friend now resides. Owning her own business makes vacation time unlimited! Her health has remained steady with a few bumps along the way, as life after cancer treatments can take its toll, but things are A-okay for which we are blessed and grateful! Tim continues to work for the government as civilian at the Pentagon. He works on the acquisition of some of the military’s unmanned aircraft systems, many of which you hear about in the news. While Tim enjoys his “play” time, whether it be fishing, running, tennis or golf, this year has NOT been a marquee year. In May, Tim developed a very rare neuro-muscular disease called Parsonage Turner Syndrome (Neuralgic Amyotrophy) which left his left shoulder partially paralyzed and both arms and hands in various stages of profound weakness and paralysis and pain. He’s been doing physical and occupational therapy 3-4 times a week and has made some improvement. He’s a little more functional than he was during the summer. His doctors have said the progress is encouraging but to expect a 2-5 year recovery. Once he recovers, he figures it’s a good excuse to start over learning how to play golf! All in all, it’s been quite humbling, but he is grateful for progress and the prayers of friends and family. Once again, we know and feel God’s grace through tough circumstances, and we grow in our faith in a deeper way. We celebrated our 25th wedding anniversary in November and we will take a trip to Sandals St Lucia (an island in the Carribean) in March. Despite living and travelling around the world with the Air Force, we’ve never been to the Caribbean, so we are excited. Tim hopes to scuba dive again…we’ll see. In closing, we hope you have a Merry Christmas season and experience its joy through times spent with family and friends. We look forward to hearing from you or even better…a visit! We have 4 empty beds now! Tim & Koryn Kyle, Curtis, Keith and Kelli Hutchison

Happy 25th Anniversary to US!

Stronger Than Before