Just A Bump In The Road

A long time has passed since my last blog entry and I just thought it was time to catch up! The holidays have come and gone and spring is just around the corner, but a cold drizzly day at home seems just the perfect time for a new blog entry. Especially so, since I've just recently come through a bump on this road called "survivorship".

When I was diagnosed 4 years ago with breast cancer, it was impossible to know what would lie ahead on my road after I finished treatment. I watched other survivors move forward in their lives, some in advocacy, some in volunteerism, some to a life that forgets it ever happened to them, and some to find that their cancer had returned or metastasized. I waited to discover where I fit into the survivorship picture, exactly. The picture is never really as clear cut as it may seem. I watch as women I met along my journey find that cancer is an ugly beast and can return at anytime along the road, 2 years, 5 years, 12 years, 19 years. And so surveillance is the best hope for catching it early, and imaging with mammogram and breast MRI every 6 months is the prescription my doctors have given to me.

Last fall I began having pain, yet my mammogram had been "normal" in August. This went on for about 3 months, so I went for a 3-D ultrasound downtown. Those images found something un -identifiable and requested additional views. That lead me back to my breast care center at Walter Reed National Medical Center where the radiologist thought it best to move up my February MRI by 2 months "just to be safe". The day after the MRI she called me to say there was an area of enhancement and we should biopsy it with MRI guided core biopsy.

Fast forward to mid-January and a very long day at the hospital for the procedure. Thankfully, she obliged my request for double anesthetic and it was relatively painless, but total recovery took several days. The result was benign tissue with a lot of changes going on in the breast. My surgeon explained to me that all that this means is that we stay the course, continue forward with a follow up MRI in July and repeat imaging every 6 months. A bump in the road. A sigh of relief. Another 6 months cancer free.

4 years ago I never realized that this might be something I'd have to deal with in an effort to preserve my other breast. I definitely understand why some women choose to undergo a double mastectomy and not stress the rest of their lives about cancer coming back. And for some women this brings them the sense of peace and reassurance they seek. But the truth is it can still come back elsewhere (bones, liver, brains, lungs) and so sometimes all the best laid plans still don't play out the way that you had hoped. It is often (not always) a decision made out of fear, not firm facts, and I just can't cave into that fear, though this recent experience certainly tested me. The trade off, however,  is this close surveillance and, when necessary, biopsy. I had one biopsy last year and one this year. I just hope the 'biopsy part' of this equation is a thing of my past now!

Our first snow of 2013

On another note, about 4 months ago I had a sharp sudden pain hit my left hip. I didn't fall or injure myself. It continued with dull aching through the fall and the holidays, and I pursued physical therapy at the order of my primary care doctor, but it was no help at all. I stopped my daily walks for a full month, took anti-inflamatories round the clock, with little relief. Terrified that my cancer had quite possibly returned to my hip, an MRI was ordered. Finally the result came back that I have a form of hip dysplasia where the socket sits too deep within the pelvis and so the femur head sinks deeper still. This causes impingement and inability for my leg to rotate normally. Climbing steps is difficult and standing from a sitting position are challenging, but sleeping or laying flat seem the triggers for most of the pain. Oddly enough, my sister, who is 2 years older than me,had her single hip replaced when she was just 47 years old. This condition is normally seen in highly active women in their 30's such as runners or cyclists. Seeing as neither she nor I are one of those ;) , my doctor feels it could be a congenital deformity that, with age, has reared it's ugly head. I guess I aged 2 years slower than my sister! LOL and made it to 49!

So in a couple of weeks I will meet with an orthopedic surgeon and see what he can do about it. There is no cartilage damage under my femur head, as was in my sister's case, so my hope is that I can get by with a less invasive procedure and be on my merry way! I don't know that I'll tackle jogging or running in the near future, but I would like Tim and I to get some new bikes and take up some mild cycling this spring!

The Dog Days of Summer @ Barrel oak Winery

I've continued my passion in photography while still operating my very busy jewelry business over Christmas and Valentines holidays. I enjoy capturing nature stills and doing portraits. I've included a few pictures here and have set up a web site as well.  Graduation season is approaching and I hope to book some sessions for that soon. I have been taking some online classes in lighting and posing. It is part creative eye, part natural effects, and part technical aspects, which I am definitely still learning!

I also am still doing counseling of newly diagnosed breast cancer patients, now through ABCD, After Breast Cancer Diagnosis and am constantly undergoing training as treatments and advances in breast cancer are always changing. It's a rewarding and satisfying result that has come from my experience, and the longer I remain cancer free I find it is one that offers hope and comfort to the many women I speak to who are diagnosed with the same type of Her2+ cancer I had.

I apologize for this lengthy entry! I hope you'll continue to stay in touch! I'll do my best to do the same and hopefully won't wait so long until the next blog post ;)
~ With a grateful heart!
Koryn

4 Years Later

October 1 marks four years since I was told those fateful words, "You have breast cancer." On most days, it isn't something that dominates my thoughts anymore. But on many days it feels like I am in a cancer time warp. I can't seem to escape it. Stuck in Cancerland.
And it's no wonder...
No other time of year can compare to the month of October when it comes to breast cancer thoughts. It is everywhere you turn. TV commercials, friend's registering for walks, pink products everywhere. It's almost nauseating. I know I am not alone in feeling like we are spinning our pink wheels in the efforts to find a cure. In 30 years of the pink ribbon, the score seems pink=30 / breast cancer=0 . I know that some advancements have been made, but in my 4 years of immersion into Cancerland, I only continue to see more and more women diagnosed, younger and younger women, and sadly, women dying of their disease.

We seem to be getting it all wrong. Finding the cause(s), developing vaccines, focusing efforts on preventing recurrences...these seem to be coming along far too slowly to save women from dying from breast cancer. All of the pink fluff is pulling money away from where it could really make a dent, and instead is filling the pockets of many a merchandiser. They've capitalized on our disease and are laughing all the way to the bank.

To mark this year's Cancerversary, Tim and I went up to Maine to see the New England foliage in all its glory. And glorious it was! A fellow breast cancer survivor generously offered up her lake cabin to us for a few days. It was the most relaxing vacation we have had in 25 years. The colors were breath taking! We saw a moose in his natural habitat as well as vistas and overlooks that mimicked a multi-colored quilt of reds, oranges and yellows. We definitely want to make this an annual excursion!

Our time there was something we will not soon forget! If God has a country, it is sure to be New England. It was just great to forget pink-tober (as well as any health related issues, tests, worries)
for a little while.

Update on BRCA BART testing

I received my BART testing result today and it is negative which is great news!

All In The Family

...or is it? When I was diagnosed with breast cancer 3 1/2 years ago, I learned that breast cancer runs in my father's side of the family. I had never known this, probably because people in my grandparent's generation never discussed such private body parts, um I mean, topics. Problem is, though, my father is an only child and men do not typically get breast cancer, so knowing the degree to which I might or might not be predisposed to breast or ovarian cancer was a bit in question.
Was it a random fluke or was it an environmentally caused cancer? Was it my own body's lack of sufficient immunity? Was it indeed a genetic mutation in my DNA? I think every woman who receives a cancer diagnosis yearns for that answer. It hangs over us like a dark cloud, partly because we think, perhaps, that if we know what caused our cancer we could prevent it from happening again. Well, as it turns out that may be partly true.

Women who test positive for the breast cancer gene(s) BRCA 1 or 2 are at a ten fold risk for breast and ovarian cancer over the general population. They tend to get these cancers under the age of 50, and they have a 50/50 chance of passing the genes onto their children. In the case of ovarian cancer, because there are no screening tests for the disease, by the time it is detected it is often in latter stages. With the advancement of technology it has recently been determined that additional women, initially deemed negative for the gene mutation like myself, can potentially test positive with a new test, called BART. ( BRCA large analysis rearrangement test) 3 1/2 years ago the genetic counselors told me that in years to come more advancements in testing would come available and this is beginning to happen now.

With my recent gyn ovarian symptoms and consideration for a hysterectomy, my oncologist recommended that I be tested. Today was the appointment for that test along with a lengthy counseling session with the geneticist. It was very educational and while the likelihood of a positive result being very slim, she has seen some surprising twists in other patient outcomes. It can have huge repercussions, so having the results is important to me. Not just for me, as far as surgical decisions going forward, but for my children, their children, my siblings and their children. Gone are the days when people were denied insurability based on genetics alone. Times are changing and some circles are realizing that knowledge is power and it is actually saving lives!!

While waiting for my blood draw I ran into a survivor friend. She also originally tested negative for the genes. She also is in a high risk category. When I told her what I was doing there she was shocked to learn of this new test for the first time and wants to see if it is something she should pursue as well. The problem with a statistic (which we often hear quoted) that only 7-10% of breast cancers are genetic, is that it is only based on those who get tested! If more women got tested would those numbers actually be higher? We won't know until insurance companies agree to test more women and results are made known. In the meantime, survivors need to stay on top of the leading news in research and testing and press their doctors to advocate for answers to that burning question... Is it in my DNA?

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!

Gratitude

This is the third year I am posting this song in honor of Thanksgiving. Often we think of this holiday as being thankful for our abundance. And we are! But sometimes being thankful means just being grateful for God's provision in ways we don't normally see. Sometimes in lessons learned, sometimes in viewing something differently, sometimes there is blessing in our want. Because in our want we learn to seek for God's presence. On a glad note, my colonoscopy has been moved up to next week! Dec. 1st. Thank you, Lord! Happy Thanksgiving to everyone!