Girl Scouts Volunteers Video

I was asked to document an event for our local Girl Scout Troop as they were going to be donating their project to a breast cancer organization that I sponsor. Here's a little compilation of that evening. I hope you'll enjoy! Click on the link at the bottom of this photo.

Girl Scouts Volunteers

5 Years Later - THE CURE

This month marks five years since the day I heard the fateful words, "You have breast cancer." Every year on October 1st I try and do something fun, something meaningful, something that feels good.

October 1st is always an emotional  day for me. One I wish I could forget but with all of the "Pink-tober" found all around us, in stores, and on TV this time of year, it makes it difficult not to think about it. I remember leaving the doctor's office that day in 2008 and driving to the grocery store and noticing all of the pink food labels and awareness ribbons on the first day of Breast Cancer Awareness Month. It kind of made me mad. "How dare they hijack this disease for profit?", I thought. And here we are five years later and nothing has changed. It still makes me mad. I hope it makes YOU mad too! Where is THE CURE already!?

But on October 1st this year I was asked to do something I couldn't say no to. Our church had asked
me to tell my story to the nearly 300 women that come there every Tuesday morning,  and I had felt an urging to do just that for several months now.

But I didn't tell my breast cancer story, though that was part of it. Four years ago I stood on the same stage at the same meeting and, while still in treatment, and explained God's grace and provision to me during my battle. What most people don't know (and I didn't know myself!) was that the battle for my mind and my heart was only just beginning. God was about to show me what my faith was really in, and what the priorities in my life were. THIS is the story I gave to these 300 women.

See, when you are diagnosed with a critical illness, and life spins out of your control, you begin to feel as though you need to take control. And so that is what I thought I had to do to keep the same awful thing from happening to me again. Getting test and after test, biopsy and after biopsy was my security blanket. I was putting my trust in what medicine could prove to me: that cancer had not returned and that I would live a long time in remission. But medicine can't promise me that, and God won't either. He doesn't do that for any of us!  I have to be okay with that, but it is a helpless feeling! The tests won't prevent a return of cancer. They only tell me that it has or it hasn't occurred.

I use to think that if I just knew my end fate in this life, I would have peace. But in my journey through cancer I have made friends who, sadly, DO know their fate. They will likely succumb to their disease and yet this knowledge doesn't give them one ounce of peace, or even one more day longer than their "appointed day". I've even lost friends to their cancer and they fought hard to the end but the end did come. None of us can escape death no matter what we do.

My struggle to find this place of contentment with the unknown brought me to a turning point this year. I went on a church retreat in March where I saw a huge bird's nest. For two days on the coast I never saw the bird. But on the last day, during Sunday's worship service, I went outside by myself to my car to retrieve something, and there was the bird! A beautiful osprey whom I just HAD to photograph! No sooner did I have that thought, I heard an almost audible voice say "No". "Wait until the end of the retreat, go back inside where you belong and when you return the bird will be here". I told God, "No he will not be here because he will fly away when people start coming out of the building and cars start up!" (Yes, I stood there having this argument with God!) But I put my faith in that promise and sure enough, hours later when I went to leave the retreat property, there was the bird!

Not only was the bird there, but for a very long time he stared me down like God Himself as if to say, "Koryn, WHY do you not trust me? Why do you not believe my promises to you?!" It was like a tug-of-war in my spirit to release this unknown. I want His promises to include a cancer free life. But I don't get to demand that. He wants my trust. He wants me to rest in Him and His plan. His plan is good, even if that includes what to us seems unfair circumstances. Our definition of good is for comfort, for security, for assurance. But this world can't offer that!

Only a God who is not of this world can show us where hope truly lies. It is in Him, our "cure" to sin and a fallen world. A promise of a body made whole again, a promise of life without death, and a promise that He will never leave us while we remain here on Earth in these broken bodies. A promise of comfort that can only come from knowing Him.

When I turned to walk to my car I heard a noise above my head. With my camera in hand, I turned and glanced up to see this

God wants to give me way more than I ask of Him. This bird soaring above my head was a gift from God to me that day. He was saying to me, I am in charge. I have the power to control this earth and all its creation. Believe that I have the power to love you and direct the days of your life. You may not understand it, and your future may not look like you want it to look, but it will be good in the ways that really matter.

Does this mean that I no longer have to undergo cancer surveillance? No. But I no longer have to be bound by fear and anxiety about my future. Wherever it leads me, He will be there every step of the way. Even  in the unknown. Even if there is pain. Even if there is suffering, loss or grief. He will be there. He holds in His hand a gift of the cure to man's undeniable cancer called sin. This is a cure we all have access to.

And this is what I celebrate 5 years later!

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?

Biopsy results

I received my post surgical biopsy report yesterday and much to my surprise it was inconclusive. It stated that the specimen did not survive processing. Of course this was very disturbing to learn. I have since learned that this occurs for various reasons, not always within human control. I have to believe that my doctor's initial observation of a herniated muscle causing the lump is correct. I just cannot subject myself to additional surgery right now, and continued surveillance will be vigilant of course. This is where my faith rubber hits the reality road, for sure!! My follow up appointment is in another week.