Wait . . . what?

When I started this crazy cancer journey two years ago, I knew what was facing me. I knew the reality of what a Stage IV Metastatic diagnosis meant. Never to be cured. Which I have learned to accept. But, in Cancerland, there is this something that people strive for, hope for and dream of: NED. NED stands for No Evidence of Disease. A more commonly used word for those non-cancer patients is remission. NED means that there is no cancer detectable on your scans, but that cancer cells still do likely remain in your body. You could be NED or “in remission” for years, but you will never be deemed cured; cancer is a vicious little shit and could always come back. I can honestly tell you that the past two years I have prepared myself to never hear those words spoken to me.

I had my set of quarterly scans last week. My bone scan ended up revealing a fracture in my foot. Between chemo, hormone therapies, and other drugs to rid my body of cancer that past two years it has also weakened my bones and muscles. I am at a high risk for osteoporosis so they told me to get used to stress fractures, especially in my feet. Monday I was given an air cast boot to wear for the next 6 weeks. Yesterday I talked with my team about the results of my CT and bone scans . . .


                                               NO EVIDENCE OF ACTIVE DISEASE

Wow. I really just wrote that. I had to ask a couple times if they were sure if that meant that the scans didn’t reveal any cancer and what exactly did it mean if there wasn’t any they could see. Officially, they won’t give me the NED or “remission” status because they cannot say for sure that there is no cancer in my body. However, there are no tumors that they can see. The lesions I had in my bones are healing. When I asked if it meant I was finally NED doc said “It’s as close to remission as we’ll get”. And you know what? I will friggin’ take that. I’m not cured. I never will be, but, I don’t need it because I have something better . . . TIME. This means I have more time with my family.


So now what? Well, this changes nothing as far as my care is concerned. I will be on my Herceptin treatment for the rest of my life no matter what. I will go every three weeks and get that infusion. Herceptin stops the cancer from producing rapidly and is what has gotten me to where I am today. If I stop, the cancer comes back, simple as that. As far as my bones are concerned, the lesions where they previously saw bone mets are healing. Not having active cancer in them does not mean I can now run a marathon or be pain free. Cancer has greatly damaged my bones. I have been going to PT and exercising to help decrease pain. I will still go for quarterly scans for the rest of my life as well.

I am happy. I am sad. I am shocked. I am numb. I am angry. I am about a gazillion emotions right now. I was off of the Cancer Roller-coaster for a long time, now I am right back on it. I am happy that this has happened to me. I am sad that it hasn’t happened to others. I am numb to this feeling of having more time. I am angry that I have lost so many friends to this disease. For a long while I wished for good to come of this, and I never felt it did. I stopped wishing, and I started praying. I prayed and trusted. I let go and let God. I trusted that whatever He has planned for me will be, and in the end, it will all work together for my good, even if it brings pain and sorrow. If He blesses me with being able to say that I do not have any detectable cancer in my body for the next 5, 10 or 20 years then I will praise and thank Him each one of those day. And if one day, my cancer comes roaring back, then I will ask Him for guidance, strength and courage; and I will still praise and thank Him for each one of those days, no matter how hard they will be. 

I’ve done exactly what I set out to do, and I am going to continue to do it. I am gonna keep working on that bucket list, because, I know, life is short, so I am gonna live the heck out of it.

The Truth about Metastatic Breast Cancer

It’s a simple, grassroots initiative started by my friend, Beth. STOMP OUT BC, taking a day to educate the world about metastatic breast cancer through social media. The only breast cancer that kills. Another dear online friend, Nancy, started featuring statistics and women living with metastatic breast cancer on Monday’s months ago, calling it #MetsMonday. The community has combined both campaigns and created a #MetsMonday to “pink out” the world with trending hastags to make the everyone aware of what MBC is, and what it is like living with a terminal disease. No more ignoring Stage IV, we are waging war on Stage IV.


What is Metastatic Breast Cancer?

Metastatic Breast Cancer is also known as Stage IV Breast Cancer or Advanced Breast Cancer. It is cancer that has spread beyond the breast, through the lymphatic system and to other organs or bones in the body. It is not yet known exactly why or how breast cancer spreads. Once the cancer leaves your breast and spreads other places, patients live an average of 2-5 years. Younger women (diagnosed between 15-29) have a median survival rate of 16% for 5 years, according to a publication from the National Cancer Institute in 2006.

Not much research is done on Metastatic Breast Cancer patients, researchers assume there is about 155,000 women and men living with advanced breast cancer. Of those, less than 5% are initially diagnosed Stage IV. 1 in 8 women are diagnosed with breast cancer, and of those, 1 in 3 of them will have their breast cancer spread, even after their initial surgery and treatments. 40,000 women will die each year, and that number has remained about the same for the past 20 years.


But, the world is aware of breast cancer so why aren’t more women surviving?

I couldn’t honestly tell you. Just because the world is aware and we have pink events, eat pink foods, and buy pink products doesn’t mean all of that money is going to fund research of advanced breast cancer. Millions upon millions of dollars are spent every year on “awareness”. Fundraisers cost money, travel to events cost money, making pink awareness products cost money . . . all of which makes us look pretty in pink. Unfortunately, looking pretty doesn’t matter much to those with Stage IV Breast Cancer. About 2-7% of funding from some of the leading breast cancer organization is spent on actually finding a cure. The majority of donations are spent on awareness. You cannot find a school, event, drink, storefront or person in October that either isn’t sporting pink or doesn’t know about breast cancer. Even our NFL teams wear pink during games and sell pink towels and shirts, in hopes to bring more awareness to the disease . . . Awareness is not the key to survival, action is.


What about “Early Detection”?

Early detection can me a doubled edged sword. Great to detect early, great to get a jump on treatment; that is if you are over 50. Women under 50 are not eligible for mammograms. 30-40% of women (of any age) that were diagnosed at an early stage (Stage 1, 2 or 3) will develop metastatic breast cancer either months, 2 years, 5 years or even 10 years after their original diagnosis. Early detection does not cure cancer and can be inconsequential to those who will metastasize. The amount of money spent on early detection campaigns will not cure cancer or find out why this disease spreads and does not help the younger population of breast cancer patients.


What does living with advanced breast cancer mean?

Well, if you haven’t read my blog before, I am very open about my journey. If you want a raw, open and honest view at what living with this disease is like, I highly encourage you to read through my posts. In one post, I compare living with advanced breast cancer as walking through a revolving door and in this post I confess my uncensored feelings on my life. Since there is no cure, a majority of women and men living with advanced breast cancer will be in a treatment for the rest of their lives. We deal with the debilitating side effects of cancer, treatments and society. The side effects range from pain to emotional instability, from surgery and exhaustion to death.

I’ve grown close to a lot of women. I call them my friends, my sisters, my breasties. Many I have not met, some I have. I have listened and watched them suffer, I have heard of their woes, saw them cry, held their hands, texted feverishly, and watched die. I have watched many friends die. That’s what it’s like to live with terminal breast cancer.

With the permission of some other courageous women, I am sharing what their views are on living with MBC:

“I look "normal" but on the inside I'm sicker than most people can imagine.” – Tricia

“Having MBC means, my 5 babies will eventually loose me. I won’t be there to comfort them, at the time they need me most' – Clare

“Having MBC means I never get a break from treatments and side effects” – Nicole

“MBC sucks. I'm 31 but feel like I'm 50 with aches and pains from extensive bone mets. I want/need a cure!” – Chrissy

“Having MBC means I have a whole new appreciation for life. Being faced with death on a daily basis is a fear like no other. Not knowing if you will see your children grow up is more excruciating than any physical pain. One that others cannot possibly know” – Kelly

“Metastatic breast cancer means to me pushing forward when the pain is unbearable. ....getting out of bed when in fact I want to sleep all day. Volunteering at my daughters' schools just because they want me there. ....planning my funeral in my mind while telling no one my dark thoughts.......” – Gina

“There is a 22% chance I'll live 5 years... My daughters will be 20. 5 years is NOT enough!” – Beth

“One word for MBC is HOPE! I hope my scans are ok, I hope I make it to next Christmas, I hope this treatment is working, I hope I can get out of bed tomorrow, I hope my daughter will be ok without me, HOPE” – Rebekah

“For my 40th birthday I got Stage 4 breast cancer. At the time my seven children were 16 and younger. There is nothing more painful than looking into your children's eyes and knowing that you are not going to be there for them.”- Tracy

“Holidays are supposed to be happy, joyful times spent with family and friends. However, I usually feel an overwhelming sadness because I can't help but think it may be my last.” – Blaike

“On the outside, I smile & look great. On the inside, I cry because I'm rotting away...one bone, one lymphnode, one organ at a time.” – Kim

“Finding the strength to fight for my family day in and out knowing that I'm a ticking time bomb. My body will either start shutting down or I will run out of treatment options. Neither of the options suffice when I have a 2 year old that needs his mom.” –Adrienne

“Try to live like everyone else but know I can't. Always wondering if my treatment is working. As a single mom I worry for my boys (12&9) and what will happen if I die sooner than later.”- Maria

“MBC is rearranging your life to accommodate the "new normal" of forever treatments of reoccurring cancer.” – Bethany

“Cancer may define the way I will die, but it will not define the way I live'” – Tracy

“My daughters were 2 & 3 years old when I was diagnosed at 37 years old. Every day is a fight to remain emotionally strong. This picture was taken on Mother's Day- 2 days before I was diagnosed with Stage3c Breast Cancer which metastasized and spread to my bones during my initial treatment.” – Amy B.

“The continual toll it takes on one’s mind, body & spirit & ones family while trying to consume us" I will always have faith, hope & strength to stay positive & not let it consume me” – Shannen

“MBC isn't about winning or getting well soon; only perseverance despite the odds.” – Amy A.

How do we find a cure then and why is this so important?

Let your voice be heard! Join us this Monday to STOMP OUT BC. Don’t let advanced breast cancer be the elephant in the pink room- post about, talk about, share our stories! Help trend our hashtags #MetsMonday , #BCKills , #DontIgnoreStageIV and #WageWarOnStageIV . No matter what you call it, Metatstic Breast Cancer, Stage IV Breast Cancer, Advanced Breast Cancer or Terminal Breast Cancer- those are the only breast cancers that are killing our mothers, sisters, daughters, fathers and brothers. What you need to do is make sure that our society doesn’t buy in to the pink-washing, and that funds are donated to research foundations and institutions dedicated to working on why cancer spreads and how to cure it.

This is important because I want to live, all the women I posted quotes from above- they want to live. I want to live to see my kids grow, I want to grow old with my husband and I want my parents to die long before I do. The thousands of women with little children or grandchildren want to live. We don’t want a life riddled with appointments, pains and heartaches and we sure as hell don’t want our children or loved ones to either.  Finding a cure is important because life is important.