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

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!                                                                                        (Scroll below)

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 testing

I received very good news today! My BRCA BART test came back negative!

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 <b>get</b> 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.

A Reason To Sing

I awoke this morning to this beautiful song sung by my 18 year old daughter. God must’ve known that I needed these words this day! Tomorrow is a big day. I will be having a surgical biopsy of a small 5/8 inch  mass found on the same side where I had cancer 3 years ago. It would be a very rare thing to have a recurrence but it is a possibility. I am grateful to have very good doctors who are thorough and compassionate. I know I am in good hands, but most of all in God’s hands! Read the last line of this song. Now listen and enjoy!

Reason to Sing

by All Sons and Daughters

When the pieces seem to shatter
To gather off the floor
And all that seems to matter
Is that I don’t feel you anymore
No I don’t feel you anymore

I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
I need a reason to sing

When I’m overcome by fear
And I hate everything I know
If this waiting lasts forever
I’m afraid I might let go
I’m afraid I might let go
Oh Oh Oh

I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
I need a reason to sing

Yeah

Will there be a victory
Will You sing it over me now
Oh
Your peace is the melody
You sing it over me now
Oh Lord
Will there be a victory
Will You sing it over me now
Oh Lord
Your peace is the melody
You sing it over me now

I need a reason to sing
I need a reason to sing
I need to know that You’re still holding
The whole world in Your hands
That is a reason to sing

Soldier Interrupted

The following article is from The SCAR Project blog. You can view the original post and photographs at http://thescarprojectblog.com/2012/05/04/soldier-interrupted/

[It humbles me and is my deeply felt honor to defer this post to my friend/survivor sister/wounded soldier/and one of the newest SCAR girls, Barbie. I was at Barbie’s quite recent SCAR photo shoot. She is one of the three newest young women to be photographed by David Jay for The SCAR Project.  By that, I mean UNFORTUNATELY… there are new SCAR photos… which is why we are doing this. The youngest of the 3 was 22. She was diagnosed when she was 21. Barbie was diagnosed WHILE IN AFGHANISTAN. I’m sorry for the all caps but again… this is why we are doing what we are doing. We must end this bitch of a disease. I think SCAR Project LA producer Diana Haye said it best: “Try fighting in Afghanistan, getting diagnosed with breast cancer, having a mastectomy, and then having the guts and fortitude to help raise awareness for other women baring it all and showing their scars…Barbie did.” And here’s what Barbie said, in this special guest post.]

The dog tags and camouflage are real. I am still active duty. I have been in for over 17 years and 2 combat deployments. In February 2011, I was diagnosed with Stage IIIB Breast Cancer, four months after being deployed to Afghanistan.

At my own risk, I wanted to participate in the SCAR Project because it is important to me that people understand and know anyone can get breast cancer. In my experience, it’s not something that’s often paid particular attention to due to the overwhelming male population. At some units, I was one of a few and, at times, the only female. We tend to think we are protected and immune to things because we are given a weapon, a FLAK jacket and a Kevlar helmet.
I spent most of my time taking care of the troops that were under my charge, a duty that most service members don’t take lightly. I would lay down my life for them. That’s what happened in this case. It’s just that the topography of the battlefield got personal, encroaching way beyond the borders of Afghanistan.

I wasn’t willing to accept the lump in my left breast that became obviously larger to me over the weeks that quickly turned into months. I sacrificed my own health and life as long as I could in order to stay and deploy with my unit. We had prepared and trained tirelessly for months and worked ridiculously long hours.

Leaving my troops and my unit behind was and still is harder to deal with than my breast cancer diagnosis. The feelings that I abandoned and deserted them and wasn’t able to ensure that they were safely returned home to their families will haunt me for years to come. This may be hard for many people to understand but that is the reality within my world.

Breast Cancer has torn me away from not just a career but a way of life that I loved and dedicated and sacrificed for. I am not going to ever get over Breast Cancer or move past it. I will live with it for the rest of my life.

I don’t believe most people actually “see” Breast Cancer. They hear about it but they don’t listen. It is just a terrible thing that happens to everyone else but could never happen to them. I hope that when they look at my photograph, they open their eyes and allow themselves to absorb and take it all in and really think about why this is happening to so many young women.

Everyone needs to understand the absolute reality of this disease. We have the power to speak up and make a difference. The importance of this goes deeper than just me. My whole family has inherited the Breast Cancer Gene (BRCA2). The fact that there is a great possibility that I have passed this gene on to my son and that my nieces are also at risk makes this whole fight worth it. Even if it is 5, 10, or 20 years from now, it could save their lives. It is my responsibility to preserve their future and ensure their longevity.

Every woman David Jay has photographed has their story. That is what makes this project so important. As different as we all are, we share a common bond. It connects us, and it reaches out to others, and connects them to us as well.

David Jay has given me the gift of allowing myself to be seen by others as I am now after being chewed up and spit out by cancer.

As awkward and uncomfortable as it may be for others to view, I am not embarrassed or ashamed. My young life has been rudely interrupted — and yet, I continue to forge on and accomplish things that others only talk and dream about. Perseverance, endurance, determination….these are the things that have been taught to me and instilled in me. I live in a world where giving up or giving in is not an option. Overcoming is the only way.

Cancer Fallout

Looking at the vacation photos in my last post, you would never know that I have been struggling with fatigue. It’s actually more than fatigue. It’s a feeling of complete lethargy. Malaise. Zapped. I’ve known for months that my body just wasn’t right. I haven’t felt this crushed since chemo, and it all started about a year ago. At that time, I consulted with my oncologist who through a series of blood tests, determined that I carry an antibody which prevents my body from absorbing vitamin B-12. Easy enough. I started monthly B-12 injections 6 months ago. At first, I did start to feel somewhat better, but in the last few weeks have had little energy to do even the simplest of daily tasks. All I want to do is just to lay down.

Last week I met with a new oncologist. Not that I didn’t love my old one! I did. I do! But when Walter Reed closed last summer, things changed, he moved to Bethesda, and  I’d rather forgo the 90 minute trip to see him. There is a new oncology ward near my home now, so I thought I’d give it a try for general check ups. Dr. “V” was very kind, very thorough and listened to my every concern. He ordered a long list of blood tests, and in short, they came back with me having vitamin D2 deficiency such that 50,000 units have been ordered for me each week for the next 8 weeks! Maybe this will be the magic trick to bring my body back to reality. Most days I feel like I am operating in a fog, unable to find the motivation to do much of anything.

Dr. “V” was so thorough, in fact, that he wants this lump on my reconstruction to be biopsied. I asked him if the MRI from February stating that it is  “likely scar tissue” is not definitive. He said that, no, it is not. He didn’t like that word “likely” in a patient who has a history of two distinct cancers and wants pathology from it to know for sure. He sat right there and typed an e-mail to the breast surgeon saying as much, and I go to see Dr. “A” in about a week and a half.  He also wanted confirmation that my choice to no longer take Tamoxifen is the right choice for me. We ran the numbers into an oncology prognosticating calculator called New Adjuvant. Turns out, because of my her2+ cancer, hormone therapy is not much benefit to me and so with his blessing I will not worry about taking it. This is a big relief because as anyone with hormone receptor positive cancer knows, as mine was, women suffer through years of side effects by blocking their naturally occurring hormones. Compliance is very low on these drugs because of that.

In addition (like I need an addition) he wanted me to follow up with  my gynecologist regarding lower back pain I have been dealing with each cycle. She phoned me the very next day and scheduled a pelvic ultrasound for the end of this month. Does the fun never end? I am beginning to think that I am deficient in FUN. That’s it! I need more FUN!

John & longtime girlfriend, Lisha

On a very sad note, I received word last month that my chemo buddy, John, had passed away. John and I sat together every week for the better part of a year. He had been at this game a long time, fighting colon cancer for a total of 8 years. He was 53. He made it his mission to incorporate colon cancer screenings into Army retirement discharge medical tests. I was shocked and deeply affected by his death. I never knew anybody to die young before I was diagnosed with cancer. Never before the age of 90! John is the 2nd friend I have lost since my diagnosis. He had a strong faith. I know he is in Heaven. I know he is free from pain. I know I will see him again! Still, the reality is not easy to accept. I have 3 friends with metastatic breast cancer to their liver and bones right now. These are women who are my age and younger. Some who even had my same staging and diagnosis 3 years ago! There is no remission for them. Metastatic means that they are at stage 4 now, and there is no stage 5.

The fall out from cancer continues. It’s sad, and it is no fun.

A much needed vacation

St. Lucia, West Indies

We spent last week soaking up the sun in the Caribbean, enjoying a much needed vacation away from “real life” and taking the honeymoon we never really had 25 years ago. It was a truly wonderful experience seeing this part of the world, meeting the local people, touring the national treasures and just relaxing. We had no TV or telephones for 8 days. On this trip we met some new friends, one couple from farm country in Illinois, a dairy farmer from Wisconsin, a couple from London and another from Northern Canada! We snorkeled, scuba dived, kayaked, danced, played pool, zip-lined and took a mud bath! It was a very full week!

No worries, No problems!

Tim was scuba certified when we lived in Guam 22 years ago, but took a refresher class here at home before leaving on this trip. He was unsure if his hands and arms would work properly for diving but was pleasantly surprised and enjoyed the 3 dives he was able to take in St. Lucia. While he dove, I snorkeled or laid by the pool reading a book. We also spent some time driving around the island and were amazed at how poor and truly destitute many of the local people live. They are affected by hurricanes nearly every year. Roads have been washed out and rebuilding is constantly going on. Banana (much much smaller than the ones here in the USA) is their main export (to the United Kingdom), as well as rum.  Their favorite quote is “No worries, No problems!”

250 feet above the jungle floor, longest line 1,500 feet! Weeeee!

If you’d like to view more of our photos you can see them HERE. Just click on the first picture to expand, then scroll through the album. Take a little stroll through paradise! Enjoy 🙂

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!

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.

 

National Cherry Blossom Festival in D.C.

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 25^th 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!

Tim and I celebrate 25 years of marriage today! Enoy the video I made for him 🙂

November 29, 1986

http://www.onetruemedia.com/share_view_player?p=fc7542cbd1b40518141757

Make a video – it’s fun, easy and free!
www.onetruemedia.com

Lift Me Up

Survival – Learning To Cope

This month, 3 years  ago, was the beginning of my cancer journey. My October 1st diagnosis cancer anniversary is approaching this week. What should be a time of celebration and victory, surviving 3 years, is, instead, a time of high anxiety and stress, it seems. For the past month I have lived on the edge of dread since discovering a new lump in my other breast. FINALLY, this week it was revealed that it is only a simple cyst and nothing to worry about. Another bullet dodged. This time.

All the while, pink washing is happening around me, around all of us. You’ve seen it, undoubtedly…pink things for sale everywhere you look, from Tic Tacs to fabric scissors and in every string of television commercials. For a breast cancer survivor these things bring a mix of emotions.  A “love / hate ” relationship with PINK.   For all of the fund raising and walking, and emphasis on awareness, we seem nowhere closer to a cure than we were 3 years ago. The advances being made are primarily in the clinical trials for metastatic breast cancer…stage 4…the worst kinds, the rising numbers of young women dying from the disease, having had it spread to other parts of their bodies. More women, not fewer, are being diagnosed with breast cancer every year. Where are we going wrong?

I have had 3 weeks of B-12 shots now, and will continue weekly for the next couple of weeks and then they will test my levels to see if I can go just once a month. I haven’t noticed a huge change in my energies, but small gradual changes, like I crash and burn  at 4 PM instead of 11 AM. I’ll take that.

I will  have a surgical biopsy of a mole on my abdomen next month (which was removed in May) and showed atypical cells in the pathology report. It grew back. “We never like to see that”, my dermatologist said.  He sent me to the dermatological surgeon, who determined it needed a different type of biopsy, the type with stitches. Oh goodie! So much for my 2012 bikini debut! The surgeon is booked for the next 4 weeks.Wait and anxiety – they go hand in hand.

That same week in October (17th) I will also have a uterine biopsy via a D & C operative hysteroscopy under general anesthesia. This is to determine the cause of what has been a year long battle of female problems, and discoveries on my pelvic MRI and Ultrasounds.  Please pray the findings of that will be easy to diagnose and treat.

So you can see that October, in and of itself, is a month of anxious thoughts for me but there are a lot of additional concerns on my plate this October.

For all of the ups and downs of health related issues, my by-line of this blog remains the same…

“Surviving Breast Cancer By The Grace Of God“.

A Smoking Gun?

It’s been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.

One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying  my body’s ability to produce mechanisms for absorbing nutrients.  He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population.  Needless to say, I think we are on to something!  Here’s to keeping my fingers crossed that this might lead me to the relief I’ve been waiting for!

We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim’s condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from.  While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon.  In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.

“Til next time!

Dog Tired

Maybe it’s just the dog days of summer, or 100* temps in July, but my fatigue continues and causes me to feel like taking a nap every day after just being awake a few hours. This is after a full 8-9 solid hours of sleep at night. More likely, it is my B-12 deficiency, a form of anemia. It is a “tired” unlike even chasing the 4 kids under age 5 that I had under foot may years ago! I can only describe it as a close 2nd to the fatigue I had during chemo….like the blood has been drained from my body. Yeah, like that. Where’s that pillow? I have closed my business for the next couple of weeks while I try catching up on outstanding orders and work on things around the house that have gotten behind.

My oncologist called last week to say that although my B-12 numbers are climbing in the right direction, they are not what they should be (at only about half the normal level) and he wants me to be re-tested in 5 weeks. I am continuing the daily Rx strength B-12 supplements. I’m hoping we can get to full levels in that time and start to feel more energetic again. August has me scheduled for a pelvic ultrasound, a mammogram and a dermatology follow up. Are we having fun yet?

Last weekend we went up to New York City to take Keith and Kelli to  Broadway show, starring our long time family friend and 2011 Tony Award winner, Norbert Butz, in Catch Me If You Can. (Click on the photo, then the little arrows to the right and scroll through the rest of the photos.) What a thrill! We surprised the kids by arranging to meet Norb backstage after the show.  He was so gracious to take the time to talk to Kelli about her musical interests, and she was star struck, also meeting the other lead, Aaron Tviet when she asked him to take our picture (not realizing it was HIM!)

Monday morning found us back at Walter Reed meeting with the rehab doctors for Tim’s condition. He continues to battle through the paralysis (left side) and numbness, nerve pain and limited mobility on right side.  He will be seeking a 2nd opinion from a renown spinal nerve doctor at University of Virginia in the coming weeks.

Fortunately we have the boys home from college for another couple of weeks to do things around the yard and house. After August 23rd we will officially be empty nesters!  We plan to try squeezing in a family beach trip in a couple of weeks and enjoy some rest on the sands in Maryland’s shores. “Til then! ~ Koryn

Central Park, NYC

Blessings

It’s been a long time since I have posted. Life has sort of consumed us these past few weeks. Summertime should be a time of rest and relaxing, but we have been spinning our wheels to and from the doctors, and it seems to be a trip in futility lately. “What if a thousand sleepless nights are what it takes to know You’re near”…the words of this song ring very true in our house right now – for 7+ weeks Tim has suffered through what is now believed to be Parsonage Turner Syndrome, a rare disease that attacks the brachial plexus nerve bundles of the spine and shoulder, creating pain, numbness, and weakness and a now palsy in his left arm and severe, sharp pains in his right hand, making even the simplest tasks impossible.  Physical and occupational therapy appointments flood his calendar while he juggles full time work at  the Pentagon. Fortunately he has a very understanding work environment. He is seeking special equipment for keyboard and phone use to make his job easier, and there is a place within the building that will provide those. When he went to check it out the woman working there had no arms at all.  He said that was a real wake up call. We are blessed.

The neighbors and our kids are pitching in to help with the work Tim normally would be doing at home during the summer. Kayaking, golf, fishing, are all out of the question for now. The prognosis is a 2-5 year recovery with varying degrees of outcomes. That is a tough pill to swallow for someone who has always been very active, NEVER sick, never had surgery or even a sniffle.  So we go to the movies, browse Best Buy and Costco, eat out and try to stay busy with friends.

The little things found here and there on my recent MRIs and Pet Scans now pale in comparison, and while I am seeking to get to the bottom of a nearly year-long pain on my right side, it is not debilitating and I will get answers when it is time. For now, I am waiting to hear from my ob/gyn as to her thoughts on recent test results.  I leave on Wednesday with Kelli for Pittsburgh for her American Idol audition, which we are all very excited about! She leaves for college in just 6 weeks, a very exciting but sad day in our household, well, at least for me and Tim who are about to become Empty Nesters! I hope you’ll enjoy the song below and remember, as we are, that God’s ways are not our ways, but His love is deep. We covet your prayers.

 

Now That Explains A Lot!

I paid a visit to the oncologist this week. I have been extremely fatigued and have continued having pain on my right rib cage side. The fatigue is what cancer survivors term ‘chemo fatigue’, which is a type of “tired” that I only ever felt while going through chemo a couple of years ago. It comes in waves, but hits hard and makes me feel like I must lay down and SLEEP right away. Just a total lack of energy by 10:30 a.m. and this after a full 9 hours of good sleep at night! The doctor ordered two tests. One, a blood test to check for anemia, and another, a PET scan to check and make sure cancer hasn’t spread anywhere. The blood work came back very evident that I have a B-12 deficiency. He prescribed mega doses of B-12 and told me that if I didn’t feel better in a couple of weeks we would start B-12 shots and see why my body isn’t absorbing B-12 through my diet. So this explains a lot!  Now I wait for the PET scan which is scheduled for 2 weeks from now.   I had a clear one of those in November, so I am not expecting them to find anything earth shattering.  Still, it will be nice to get another all clear from cancer!

I also had a pelvic/uterine ultrasound this week and am still waiting for those results. Something lit up on my MRI in February that was non-descript. The gyn. wanted me to wait a couple menstrual cycles before looking again via U.S. When I had the exam I told the tech about it and she said, “No ‘it’s’ still there. I see it”. Of course, she can’t tell me what it might be or what she thinks, so the radiologist is looking at the views and I hope to hear this week. I will admit I’m a bit curious. It is in the myometrium, the inner walls of the uterine muscle, not the lining. Any thoughts from anyone here who may have had this? I’ll just say symptoms in this “female” regard are “annoying”…no pain though. (The only reason we found this was in the hunt for what may be causing the pain on my right side, of which this isn’t even in the same vicinity!)

This has been a very eventful week in our family. Kelli, our youngest graduated Summa Cum Laude from high school, so now we are officially “Empty Nesters” once she leaves for college in 2 months.  We’ve also had a lot of visits with Tim to doctors and E.R.’s for his
3-week-long  shoulder/neck problems, which MRI finally revealed to be a herniated disc and subsequent pinched nerve and mobility problems with his left arm.  He is due to see a spinal surgeon this week at Bethesda Naval Medical Center in Maryland.  Father’s Day is next weekend, but currently, golf, tennis and kayaking (3 of his favorite activities) are out of the question!  I will keep you posted as to what happens next on Tim’s medical front. Please pray for Tim.