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.

Home from surgery

Just to update you on today's procedure. It appears it may have been a muscle bulge and trapped into some scar tissue in my reconstruction. The surgeon made a 2 inch incision, elevated it, released the muscle and biopsied tissue there just to be safe. We should have results in a few days but thankfully he did not seem at all worried. On a side note, this was the same surgeon who after one of my first surgical biopsies 3 1/2 years ago assured us that those types of tissues are never cancer and not to worry and then had to deliver the fateful news of a cancer diagnosis 10 days later. My first hope is that through THAT experience he has decided not to give his opinion unless very, very sure of it. My second best hope is that he is right to be confident in his assessment this time. In the meantime I am resting and enjoying a fancy combination of pain killers and pampering from my family :) in spite of a post anesthesia headache. Maybe just plain ol' Tylenol will do the trick on my head while the narcotics work on everything else. And as always, thank you for your prayers!

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!

A 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

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 and 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.

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!