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.

I'll Love You Forever

Motherhood.

It’s seen me at my best moments. It’s seen me at my worst moments. It’s been the toughest, most rewarding, horribly-best role I have ever had. Motherhood is the crazy-hide-in-the-bathroom-wanna-run-away-heart-so-full-of-joy-indescribable kinda love. I’ve just always wanted to be that perfect Mom. It’s what I strived for.


I don’t know what made me value my motherhood by a series of achievements and busyness but I became the Mom that everyone asked “How do you do it?” Looking back, what I really hoped for was someone to sit me down and said “Listen crazy, take it down a notch”. Social media has been a double edged sword in my motherhood journey. It’s been great to connect with other Mom’s, but a constant pressure of how to raise your kids was exhausting. You could read everywhere and see every other Mom, and they told you how to feed your kids, organize your house, schedule your time, decorate, craft, and even spend time with your kids. Did I really need to read about how I should spend time with my kids? No . . . but I did because society made me feel that I wasn’t good enough. I was so obsessed with being the best Mom that I could be that I couldn’t see how much I was actually missing. I didn’t have time for much, including myself or my health.

Go back 3 years. I cleaned every day. I mean I cleaned. Every. Day. I made dinner every day. We barely had money to eat, let alone eat out, but I made 3-4 course dinners. EVERY. DAY. And we ate only on glass plates with silverware that needed to be washed every day. The kids made a craft at least twice a week. I made sure they had “learning time” to work on knowing ABC’s, writing their names, knowing their shapes and colors. I had to bathe them every other day. We lived on a schedule. I was a mix between Captain Hook, a Marine and Martha Stewart. Holiday’s had to be elaborate. I decorated for every season. My house had to look good. My kids had to look good. I had to look good. But no matter how much I did, or how engrossed I was in those routines . . . I never felt like I was living up to my own expectations.

And then my world came crashing down. 2 years ago, a doctor walked in to my hospital room and told me my breast cancer, which we had found out about just two weeks before, had actually spread all over my body. That I likely would never be cured and that they would try to save my life. I didn’t care about being perfect anymore. I didn’t care how clean my house looked, if I made dinner, if we ate off of paper plates, if the kids bathed, if I bathed- being perfect doesn’t matter when you’re very existence is threatened.


Time mattered. Moments mattered. Memories mattered.


All of the sudden, I wasn’t just going through the motions of life. I was living them. Really living them. The wind was like a hug from God himself. The beauty in my twins stopping to smell flowers made me not worry about getting places on time. We slowed down. I appreciated a messy house filled with toys. A book became more than a book. It was an intricate story with real meaning.


I’ll love you forever

I’ll like you for always

As long as I’m living, my baby you’ll be.



I took Stephen out for lunch, who is healing great by the way, and an elderly woman and her older son sat behind us. It reminded me so much of that book. Here I was, being driven crazy by this little boy and yet being so incredibly in love with him. The son helped his mother with her jacket, helped her sit down and they sat and talked as they ate. When they were done, he helped her up, put her jacket on and helped her out the door. Maybe God opened up my eyes to that because I will never have it. I may never have it, but I appreciated that occasion. In that instant I knew, it didn’t matter how perfect that Mother was, or how clean her house was, or how she spent time with her son- he loved her, unconditionally, just the way she was. 

The words took on a form to prepare my kids for the day I wouldn’t be around. Someday, I will die, we all will die. Hopefully, God will grant me a miracle and let me stay around for another 50 years, but if not I am okay with that. I am learning to trust that whatever may come to be will be. I appreciate more of motherhood than ever before because of this. I always feared I wasn’t perfect enough, but I am perfect. I am perfectly imperfect. And that is okay with God, and it’s okay with my kids . . . and it’s okay with me.

Keeping My Eyes Above the Waves

It’s been a crazy past two months. Steve had his surgery in late November and did great. It was really nice having him home for the holidays. I spent the month of December focusing a lot on the kids. Stephen turned 5 and we had a big party for him. Followed it with tons of Christmas activities and prepping. We had a superbly blessed Christmas. I was in awe over the twinkle in each of my children’s eyes for the magic the time of year brings. Everything was made good again. My marriage and motherhood seemed stronger than it has been in years. 

January brings up many emotions for me. Not only was Stephen scheduled for surgery but I had my first mammogram and breast ultrasound in January- my biopsy, my diagnosis; it’s also the birthday of a daughter who is no longerwith me, and her “angelversary”, along with memories of her funeral and burial . . . oh,  and it’s mine and Steve’s birthday. That’s a whole lotta crap to deal with in one month.

Stephen’s surgery went great. He was hospitalized for a couple days and discharged home. He healed up quick and has been doing great after his liquid-only diet. He is now on soft foods now and can have solids again in a month. We have been very busy with genetic appointments and follow up appointments with him. He has many tests and more appointments in the spring.

I had my scans at the beginning of the month as well. Everything was stable- no regression and no progression. I do have some gallstones, which could be drug induced, and may need my gallbladder out if I have another attack. The compression fracture in my back is possibly pinching a nerve down to my foot and makes it hard to walk. I am loading up on more medication to help with that. Since putting me back on chemo wouldn’t really do much of anything, I am still able to continue my break from chemo- it’s been one year and I love it. I go every couple weeks for my maintenance infusions, which help keeps my cancer at bay. I still deal with the perfuse swelling of my optic nerve as well and will follow up with that doc soon. I am going to be getting another port and have been working with the dermatologist to help rid my body of any staph that may have been lingering after my repeated infections. I feel okay though. I definitely am still not how I used to be, but, I am slowing accepting the fact that I won’t ever be that go-get-it person again.

It’s been 2 years since I was diagnosed. The average survival rate for a woman my age with advanced breast cancer is 18-24 months, and a less than 15% chance of surviving 5 years. I am officially on borrowed time. I am happy to be around another year and yet absolutely scared shitless to see what the next year may bring.

I’ve been asked before if I am “over” different things. Am I “over” the death of my daughter, “over my diagnosis”, am I moving on from grief and cancer? Honestly, no, I am not over or moving on from anything. I am living through it. I have been living through it since she died and since I was diagnosed. There’s no other way. 11 other months out of the year I am fine. I can do okay; my grief isn’t raw, it doesn’t consume me, but it still lives within me. And when January comes, I cannot help but suffer through those moments all over again. January makes me question so much. I cannot understand why I was chosen to walk this path.

It comes down to one thing: trust. Do I trust in God enough to know that all things will work out for the good? Can I trust that I don’t have to worry, just pray? I won’t lie, when the ocean’s rise, it’s hard for me to keep my eyes above the waves and focus on Christ. But the minute I take my eyes off of Him, I sink. I try though, I try so hard. I get so shaken, and I feel so worn. I try to make sense of it all. There has to be a reason, after all. At least that’s what everyone always tells me. There’s a reason it happened, and only the Lord knows; but I want to know why. I can hear Him telling me to just trust and not rely on my understanding; to stop trying to figure out the chaos. He reminds me I have strong roots, the waves and wind won’t break me. Sometimes I hear loud and clear, and it’s a great feeling, but sometimes I can’t help but doubt the plans. And you wouldn’t know what that’s like unless you have walked in my shoes and have experienced these kinds of tragedies. You have no idea how I pray for peace so that my faith doesn’t have to suffer or have an ounce of doubt. It’s so damned hard some days . . .

I turn 31 today. I’m here another year. I am extremely thankful to be here still. My next year I plan on fixing my eyes on my relationship with Christ, loving on my hubby, spoiling my babies and crossing some things from my mommy bucketlist. I won't get over anything, I'll continue working through it.

Rostraver mom continues to set goals despite battle with cancer

Jim Ference | Trib Total Media

Kate Crawford gets a hug from her kids Stephen 4, Lily 6, and Grace 6, on Tuesday, October 14, 2014 as they look over pictures of a kick ball tournament that was held on her behalf.

By: Chris Buckley
Wednesday, Oct. 15, 2014, 12:56 a.m.

 

Kate Crawford's bucket list is filled with hopes and dreams, things she wants to accomplish in the time she has left with her family.

But her greatest dream is to find a cure for the cancer that has grown in her.

The Rostraver woman created her bucket list after being diagnosed last year with stage IV breast cancer.

“The bucket list is not necessarily for me,” Crawford said. “That's why I dubbed it the ‘Mommy Bucket List.'”

She and her husband, Stephen, have twin daughters, Grace and Lily, 6, and a son, Stephen, 4.

Last October, Crawford operated a lemonade stand at her home, raising $5,000 for the Magee-Womens Research Institute and Foundation and the UPMC CancerCenter.

“The little things most parents wouldn't think of are very important to me, like having a lemonade stand or seeing a child get an A on a test,” Crawford said.

“The things most people take for granted are my hopes and dreams.”

This year, her fundraising goal for the lemonade stand was $10,000.

The Kids II Foundation recently named Crawford a Pink Power Mom, one of eight women worldwide recognized for their efforts in breast cancer outreach and fundraising.

The award carries a $5,000 donation to the breast cancer association of Crawford's choice.

In February, Crawford will travel to Atlanta for the Kids II Foundation gala fundraiser.

“I'm looking forward to the gala and looking forward to being a mentor and growing with them,” Crawford said.

CRUSADE CONTINUES

Crawford hosted two other fundraisers this month.

On Oct. 3, a Paint and Sip event at Off the Wall Arts in Charleroi generated more than $2,500.

Last weekend, she sponsored a kickball tournament that raised nearly $2,000.

Ten teams played in the double-elimination tournament at the John DiVirgilio Sports Complex in Rostraver.

Township officials donated use of the field, and the Belle Vernon Youth Soccer Association donated use of the concession stand, including food.

By month's end, her efforts will have generated $25,000.

Diagnosed in January 2013, Crawford learned the severity of her cancer the following month.

Statistically, the median survival rate for stage IV breast cancer is two to three years, Crawford said.

“There is no cure for breast cancer, so helping to aid those efforts literally means saving my own life,” Crawford said.

Crawford has persevered despite many obstacles. She underwent active chemotherapy last year, but the doctors gave her a break in that treatment after her condition stabilized.

She now receives targeted chemotherapy every three weeks.

“It just keeps my cancer at bay,” Crawford said.

As the cancer spread to her spine and pelvis, Crawford had problems walking. So she undewent daily radiation therapy for two weeks. Radiation helps alleviate some pain by shrinking tumors, especially in her pelvis.

“Now I go weekly for physical therapy,” Crawford said. “Since starting physical therapy, I've been feeling great.”

Hair loss is often a side effect of chemotherapy.

Her hair has grown back, but “I would rather be told I have no cancer,” Crawford said.

POSITIVE OUTLOOK

“My kids and my husband are the ones who keep me going,” Crawford said.

The bucket list provides incentives.

“Every month, we work toward checking it off,” Crawford said. “I'm looking forward to being a (Pink Power) Mom and doing what I have to do to find a cure.”

The award solidifies Crawford's role as an inspiration to others.

“It makes me blush,” Crawford said. “I want to inspire people with my story. I want them to know that no matter how hard things get it will be OK,” Crawford said.

THE LIST REMAINS

In January, Crawford's son will undergo palate reconstruction involving the roof of his mouth. That will be followed by therapy to reteach him how to speak.

“No matter what happens, I know everything is going be OK,” Crawford said.

Some bucket list items were simple, others sentimental. She hoped to see her children attend a prom, which happened last year with the help of Belle Vernon Area School District officials. Some items are dreams, such as taking her family to New York for an extravagant vacation – or curing cancer.

“When I wrote up the bucket list, the whole Mommy Bucket List, I knew half of it was unattainable,” Crawford said. “They are dreams, but right now dreaming is pretty awesome to me.

“Even if I can't cure cancer in my lifetime, maybe my kids will look at that list and say, ‘This is something Mommy wanted' and complete them.”

Chris Buckley is a staff writer for Trib Total Media. He can be reached at 724-684-2642 orcbuckley@tribweb.com.

Read more:http://triblive.com/neighborhoods/yourmonvalley/yourmonvalleymore/6961840-74/crawford-cancer-list#ixzz3HjoCUhp6 
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The Revolving Cancer Door

The entrance to the hospital has an automatic revolving door. It has two sides and allows people in and out through two rather large openings. If someone would happen to not move fast enough, or touch the door while it is moving the door stops. People come in, people come out. Much like life; our lives move- allowing us to come in to new ventures and out with old ones. When we stumble, life can pause for a moment, allow us to pick up the pieces and then back in to the revolution we go. No matter if we are entering a new phase in our life, or leaving behind another, we must use the door. The revolving door for a terminal cancer patient, however, is unchanged. I can’t pause, I can’t get out, and I just keep circling; watching through the glass partition at everyone's lives on the other side that goes in and out.

I had a nice summer break, really no illnesses, crossed some things from my Mommy Bucket List, and even took a break from blogging and FB to enjoy my family more. Around the time that I was going between doctor’s opinions on whether or not to have a mastectomy, pain started in my hip and back again. What most people cannot comprehend is that for every ache, pain or slight change to my overall health, a thousand of my caretakers freak out, including myself. Is my pain cancer? Has the cancer spread? Will I go back on chemo? What if that chemo doesn’t work? Is this the end? Should I finish the plans for my funeral now? And with one achy hip you have yourself buried 6 feet under. It is impossible to not think worst case scenario when you already have cancer. You are on borrowed time. The average life span of a person with Stage IV breast cancer is 18-36 months. You always assume the worst. I am going on 20 months since I was diagnosed. I immediately thought my cancer had spread further in my hip and I knew what steps were next. First, you report it. Then they set you up with a bunch of scans. You get the scans. You go in to an emotional turmoil for the days following your scans. You think 24/7 about what those scans show. You check you’re online medical records for updates just about every minute. This is not like a cold that will go away. This isn’t a cold, this is cancer. Cancer that has already spread, and will spread further until it kills you- it’s only a matter of when. So every time you think its spread, you just can’t help but wonder- is this it?

I started the whole process, at one of my infusions, I reported my pain. Then I was ordered for 4 MRI’s of the area, after 2 immediate XRays. Then I waited. And went crazy. And waited. And planned my funeral. And waited some more. Finally the report came back and I met with my oncologist. Thankfully, the pain was not a spread of cancer, but cancer related nonetheless. The tumors in my pelvis are causing some serious tendinitis, straining my muscles. I have a compression fracture in my spine from the lesions in my vertebrae. It makes it quite hard to get around so I am going to be in to physical therapy 2-3 times a week for a couple months. We also found that my bone marrow seems pretty damaged (from chemo), and is probably what has been causing my abnormally low platelet levels. If my levels keep dropping then I will follow up with a Hematology Oncologist. So it wasn’t new metastases- will I do a happy dance? Absolutely not. Because I know, it’s cancer related. The cancer will spread further at some point, maybe it didn't today but one day, it will. I can’t move forward in life and I can’t just stop going for infusions. I am stuck. Everyone else around me moves on. Friends have babies, start new jobs, and go back to school, open a business- and I can’t do any of those. Cancer restricts me from that.

Then I noticed it. The revolving cancer door: Infusions. Scans. Repeat. Pain. Scan. Repeat. Infusions. Scans. Repeat. Pain. Scan. Repeat. Going round and round with no way to stop, no way to start something new, no way to leave. And I keep in this cycle until it stops. But when it stops for me, it won’t be so I can get out and move on, it will be because I can’t keep going anymore. It can be lonely and isolating. I watch the world pass by and pray that I, too, again someday can be worried by the mundane things of life without a care in the world. People forget. They forget I am in here all alone. They forget that I keep circling, so they hop out and move one. Such is life . . . everybody’s life. Except mine.

Now don’t get me wrong, in the stupid revolving door, many things won’t happen. My love won’t be incapacitated. My faith won’t be shattered. My hope won’t be forsaken. My strength will not be eradicated. And my soul will always be smiling.

I will live life for now, around my cancer. I will do me- I will love on my babies, my husband and my family. I will feverishly work to fund breast cancer research aimed to find a cure. I will go on in my revolving cancer door until I no longer can. And I will do so with the same courage I walked in here with.

The Cancer Isn’t Always Greener on the Other Side

After the meeting with the breast surgeon. I was feeling depleted. I never researched about women who present with metastatic breast cancer having a bi-lateral mastectomy. I guess naïve me just assumed that’s how the journey went. A vast majority of women with breast cancer receive some type of surgery, even ones who have a complete response to chemotherapy will have mastectomies. I didn’t have any reason to assume I was different. Until that meeting.

I don’t think the breast surgeon took in to account my mental well-being. I never was asked what I want. She saw studies, she saw numbers, but I don’t know that she saw me. She told me how she thought I would feel, not knowing that it wasn’t really my outlook. I had my mind made up since my diagnosis that this would happen. I never questioned it. Any time I had asked my oncologist about having the mastectomy, he never led me to believe otherwise. If I had been told at the beginning how controversial the surgery was, and that it just wasn’t for me, I would have never been so dead set on having it done. My oncologist told me once that he felt that I would have a better overall outcome as a result of having the surgery so I had set it as a goal. If I reached that goal, it meant I was essentially doing better. There was this obvious tension between my two doctors. They didn’t agree, and my breast surgeon didn’t try to sugarcoat any of that. She blatantly disliked his opinion and there was no room for compromise. Again, what she wasn’t understanding was that if having my breasts removed meant that I had a miniscule chance of living even a day longer, I was willing to do it. She just didn’t hear it, though. She just didn’t seem to get it.

 She had me sent for two additional tests, a breast MRI and a mammogram. She called me the day after and told me I still had a very small spot (6mm) of cancer in my right breast. The she said “You know, I read your blog”. I wasn’t quite sure what to think of that. Maybe she read of my pleas? Maybe she understood a patient’s perspective better after reading it? That didn’t appear to be the case. I never once heard “I understand where you are coming from. I understand why you want this done.” She only defended her actions, maintained her research and said she called my oncologist about my blog. I suddenly felt violated. As if my Mom had just read my diary and told my Dad on me. I was not pleased.

There is a physical aspect of cancer and a mental aspect of cancer. You can’t be in the profession of dealing with cancer patients and be narrow-minded. There isn’t only black and white. There’s a lot of grey. Emotions play a huge role in the life of a cancer patient. Only 30% of breast cancer patients are metastatic which puts them in to a completely different category than other staged patients. The cancer has already spread and we will die as a result of it, it is just a matter of when. Our lives revolve around trying to stay alive. It’s mental. Most patients that doctors deal with are just looking to get through their diagnosis; do what they have to do to get it over with and move on. We cannot. We will never move on. Cancer is intricately woven in to our daily lives for the rest of whatever time we have left. Do you think that because I already know my cancer has spread that this makes things easier or better for me? That the decisions I make should be effortlessly assured? Absolutely not. In fact, it makes every single choice ten-thousand times tougher. I know the cancer isn’t always greener on the other side. I know that the other side is physical pain and disfigurement. BUT, I would rather have a peace of mind; knowing that a secondary breast cancer will never occur in my breasts. I’ll take the pain over chemo and radiation any day of the week. Being on this side of cancer: the bad side, the “oh shit” side, the inescapably horrendous side of cancer, the side you think of twenty-four hours of every day, unequivocally sucks. Honestly, anything looks better than the emotional tolls that havoc my mind.

The whole saga put me in a pretty deep depression. I felt dismissed. I felt isolated. I felt alone. It was taking a toll on my family, too. One night my five year old cried the whole night over anything and everything. She begged me to not put her to bed, she wanted to sleep with me. When I told her no, she cried hysterically. I finally asked her why she was so upset about this and that’s when my heart broke in two.

“I never got to see you when I was in school. Now I’m outta school and you’re always at the doctor because of your cancer!”

I just want to live longer. This girl, she can’t live without me. She needs me. All my kids do. My son, he needs me to be there. They need my guidance, they need my discipline and most importantly, they need my love. If I have to trade in my breasts to do that . . . then so be it.




I met with my Oncologist last Thursday and reported that my liver and bone mets are still stable. That’s about all I can ask for: stability. I expressed my concerns over the consultation with the breast surgeon and I told him “I am not trying to be cured, I am just trying to live as long as I can”. To which he replied, “Well, I am trying to cure you, and if you want to have surgery, then why not?” He never has me convinced of what he knows and that is that there really isn’t any upstanding evidence to prove that a bi-lateral mastectomy on a metastatic patient will “make things worse” or not do anything at all. That fact remains that no one, no doctor in the universe, knows if the surgery will improve my overall prognosis because there isn’t enough supported research studies. He agreed that if I am at a higher risk of having a secondary breast cancer, then my breasts need removed. I finally heard “I understand where you and coming from. I understand why you want this done.” A giant sigh of relief hit me and a smile swept over my face.

The consensus is this: If this breast surgeon doesn’t want to do this surgery, then we search for one until we find one that will. Simple as that.

It’s My Body and I’ll Hack Off My Boobs if I Want To

Having metastatic breast cancer . . . presented at initial diagnosis . . .  at 30 . . . with a genetic mutation . . . is a few things:

1.    Rare.

2.    Unique.

3.   Difficult.

4.     Sucky.

Rare: to be diagnosed with breast cancer under 40 accounts for only 7% of the population with breast cancer. Unique: About 6-10% of patients are Stage IV (Metastatic) at their initial diagnosis. Difficult: It can difficult to treat and manage metastatic disease and the median survival rate is 2-4 years and even lower for women under 40. Sucky: I am this huge ball of rarities that no one really seems to know what to do with. I don’t fit in to the “norm” metastatic breast cancer group, young cancer group or breast cancer group. It is very isolating and frustrating.

After I met with the breast surgeon on Thursday I felt defeated and worn. I have been in this journey for 18 months. I am coming upon the average survival rate ranges for women my age. It has left me feel very anxious most days. I have prepared myself for 18 months to have a double mastectomy. Ever since the primary tumors in both of my breasts no longer showed up on the CT scans I was told by my oncologist that after a few stable (no new lesions/progression) scans that I could have a double mastectomy.

See, here’s where the gleaming bag of rarities comes in. Since I was initially diagnosed Stage IV, I was never offered a double mastectomy to begin with because I needed to start chemotherapy right away. We needed to reduce and try to stop the progression of my cancer. Simply removing my breasts would not work. The other 90-94% of breast cancer patients who are Stage IV, more than likely already had some type of surgery. They had been treated for breast cancer prior to their Stage IV diagnosis. It was hard to “fit in” with them. Not having gone through that part of breast cancer made me feel as if I was the new kid with glasses in a 3rd grade class. I looked at the double mastectomy as a goal I worked towards. Fun goal, huh? In my mind, reaching this goal meant that I was doing well.

“Why?” seemed to be the question of the day with my breast surgeon. Why give a woman whose disease has already spread a double mastectomy? She was very against me having a double mastectomy. She in no way agreed with my oncologist, even laughing at the research he quoted to me. She was very thorough and explained her own research stating that in another country there was a study conducted with women with metastatic breast cancer. The trial had some women receive a bilateral mastectomy and women who did not and they followed their progress for about 2 years. The research claimed to have shown absolutely no benefit to having surgery. She told me the surgery would not benefit my quality of life. All I heard from that was “You are going to die anyway, so what’s the point”. I was not worth the surgery. She explained the risks involved in the extensive surgery trying to almost scare me out of it.

Besides a couple of the very selfish reasons I listed above, I also have some very reasonable rational. When you are diagnosed with Li-Fraumeni Syndrome it is suggested that a woman with breast cancer not only has the breast with cancer removed but that she also has the other “healthy” breast removed. The instance of having a cancer return or developing a secondary cancer is very high for me. This would eliminate the chance of having cancer return to my breasts. Secondly, while it is controversial, there is research that suggests a woman with metastatic breast cancer that has a double mastectomy can improve her prognosis by as much as 2 years. Although, according to the breast surgeon, that study is wrong.

Lastly, and most importantly, when I started this journey I made myself a little promise. See, when our angel, Shannon, was born we didn't know she also had a congenital heart defect. The neonatal cardiologist met with myself and Steve and told us that she only had a 1% chance of surviving surgery. We made the hardest decision of our lives by removing her from life support. The “what ifs” have plagued me, and I always wondered “What if she was that 2%”, “What if she had made it through surgery and lived”. I felt as if I gave up, I let her die without knowing if she would have made it through surgery. I vowed to never do that again. I promised myself when I was diagnosed that I would fight, no matter how small the percentage, no matter how slim the statistic. If this surgery could possibly extend my life, even if it was by 1 day- I would do it.

Even with all of the reasons I gave, she still is against me having a double mastectomy. Ultimately, (she said about 10 times) it is my decision.

I thought I was going to break down in the office. I was so upset. I felt officially defeated by this stupid cancer. I was so confused by the disagreement between the two doctors. It just didn't make sense. If someone told me at the beginning that surgery would never be in my cards- so be it, I would have accepted that. But I have been told for months not only could I have it done, but that it would potentially improve my prognosis.

After researching the buh-jeebezes out of everything she told me, I will say she still doesn't have me convinced that it won’t help my overall prognosis. Apparently, a bi-lateral mastectomy in a metastatic breast cancer patient is very controversial. Some research says it benefits the patients, some says it doesn't. There are only a handful of studies conducted regarding this subject so it is very hard to say whether is actually extends life or not. I decided to ask some other women who are also Stage IV to see if there is/was anyone in a similar situation to mine. Not too many. One woman with Stage IV breast cancer actually sent me a message telling me to stop worrying about my breasts and worry about saving my life. Another told me that the surgery is not something I should take lightly. And one even suggested I am not undersdtanding the toll it will take on me. Really?! I am trying to save my life! I know the risks involved. I know what a traumatic surgery this will be, emotionally and physically. I would not voluntarily get my boobs hacked off for the hell of it. I feel that this I something that must be done to live a longer, fuller life with my family. Do you really think I care if I have boobs or not? Um, no. To say I was surprised by some of the responses is putting it lightly. Most of the women were very supportive of the “It’s my body and I’ll do what I want” approach and suggested me getting a second opinion.

The surgeon ordered me to have a breast MRI and mammogram. She wants to see if there is any evidence of cancer in my breasts that other scans might not show (she isn't convinced that the CT scan is very accurate). She wants to present my case to the other breast surgeons and oncologists at the hospital’s weekly conference. This would be a second opinion of sorts. That will be the determining factors of whether or not I will have the surgery. If that isn't stressful enough, I also have my quarterly scans. This time it’s my CT scan and bone scan. Scans = Scaniexty. More anxiety . . . yay.

It’s just so completely frustrating. I just want a shot at living longer with my family. Is that too much to ask?

I Didn't Know You Were a Doctor!

Ever since my diagnosis in January of 2013, I have been given tons of unsolicited medical advice on what cures cancer. Everyone I knew, and even didn't know, turned in to highly educated medical oncologists. Any herb, supplement, fruit and illegal substance has hounded its way in to my news feed or Facebook page. Everyone knew someone, who knew someone, who knew someone who was cured of cancer by smoking or ingesting cannabis. Which, is a fancy name for the very illegal substance marijuana (married to a cop here, folks!).  A sister of an acquaintance was cured of cancer by sprinkling turmeric on her food. I should eat the fruit of the tree on the tallest mountain, that sits next to the purple primrose on a Saturday evening at approximately 8:02 while standing East on my head in a country I cannot even pronounce because if I didn't know, that cures cancer. And there’s the ever popular “cancer foods” that I should eat which prevent cancer. Prevent? I think we are a little late for that. And my ever favorite- of course, the pharmaceutical companies do not want me to know any of this. It's a big conspiracy. 

 I wasn't aware of your medical degree! I didn't know you spent roughly 14+ years working on your doctorate specializing in oncology. I mean let’s break it down, shall we.

You did all this:

-Finished Pre-med or obtained your Bachelor degree which takes approximately 4 years 
-Went to medical school which averages 3-4 years 
-Enrolled in a Residency program for 3 years
-Then took a couple months to study for your Board to qualify for fellowship 
-THEN worked on your fellowship for 2-3 years focusing on oncology 
- And finally completed your Board examination in Oncology which can take about 6 months

Congratulations, Doctor! And in the meantime, you ran clinical trials on your cancer curing hoopla, which can take years to get to human trials and YEARS in human trials before becoming approved.

Um, hello, I have cancer. I am pretttttyyy sure if there was a cure, I would know it before you or your sister, brother, aunt, great uncle or second cousin would. And not that I am a doctor, but I got me one of those. A specially skilled, highly educated, CHIEF of Oncology at my hospital. He’s the big cheese. I think he would be greatly offended if he didn't know there was a cure for cancer before the rest of the civilian population.

There is no cure for cancer, I don’t care what anyone says. I don’t care what you read and I sure as shit don’t care what your momma told ya! Please, read this carefully: Every single cancer cell in each person’s body is absolutely unique. There are no two people with the same kind of cancer cells in their body. Each person reacts differently to the drugs they use to treat cancer. Because, that’s all they do- treat it, they do not cure it. Sometimes the cancer cells react accordingly to a drug and diminish with no metastasizes, which is great- however, a person with similar type of cancer could react completely differently and end up with metastasizes. There are a gazillion environmental factors to add in, genetics and so on and so forth. I can tell you of many vegans, vegetarians, HEALTHY women you have died from breast cancer. Even if one person was “cured” from the fruit of a Zabillybonbon tree that does not mean it will work for the next thousand people in line after them. Because, let’s say it together, everyone’s cancer is different!

Am I being a smart ass? Yeah, I am. I don’t mean to sound harsh, but have you ever heard of the saying “If you can’t say something nice, don’t say anything at all”? The same applies to this situation. If you yourself, have never been diagnosed with cancer, have never been through chemotherapy, the emotional tolls, side effects of radiation, the surgeries, the appointments, the heartache, the financial burdens- then you are not qualified to offer any unwelcomed medical advice to someone with cancer. How can you possibly know what it’s like unless you have been through it yourself? I know, I know, you’re just trying to be nice, and I get that, I really do; but seriously, if you don’t think I don’t know of, I don’t wish for- I don’t dream of a cure, you’re insane, because I think about it every second of every day of my life. It’s my reality. Not yours. If you want to do something nice for me, offer to cook a meal for my family during my upcoming double mastectomy, offer to help with the kids, drive me to an appointment, clean my house, offer anything other than medical advice.

Bad Days Happen

I have bad days. I have good days, too. I embrace both. They keep me grounded. I do not suppress my feelings of hopelessness, despair and desperation. I drown in those feelings from time to time but never let them consume my spirit. The allow me to do one thing: remember that in the sorrow, I will find hope, faith and love.

It hasn't been easy since I had radiation. The month of April alone I traveled over 445 miles to doctors’ appointments. And yes, you read that right four hundred and forty-five miles in less than a month. The effects of radiation were worse than chemo and what’s life without a little drama mixed in from friends or family? It was tough. I finally started feeling better this past week. The radiation did wonders to my pelvic pain and I barely have any now.  The damage to my bowel and whatever nasty stomach issue I was having seemed to have worn off. I am still a little leery about the whole “feeling better thing” because it never usually lasts long. I am taking it easy for now. I haven’t been eating super healthy as I am not supposed to be eating too much fruits and veggies because of the bowel damage and since I haven’t been well enough to exercise I get pretty worn out when I try.

I have been having a lot of anxiety about my upcoming appointment with the breast surgeon. A huge part of me does not want to have a double mastectomy. They are my breasts. Breasts are not supposed to be hacked off of your body. I know it sounds selfish but I just don’t want to get surgery. I just don’t. I don’t want to have disfigured breasts. I don’t want to be in pain. I don’t want to feel awkward anymore. Then again, I don’t want cancer anymore either . . .

I still am not sure exactly what type of surgery I will have. I thought I was dead set on having a TRAM Flap reconstruction done, which uses your belly tissue and muscles for a more realistic feel, but now I don’t know if I would be eligible for that surgery. I have a rather large vertical keloid on my stomach from having SJ and don’t think the tissue is very usable. The silicone implants wouldn't bother me but I keep reading how painful the expanders they put in to stretch your tissue are. Pain terrifies me anymore. I am a big baby . . . never used to be though.

And trust me, this is no boob job or tummy tuck. If you’d like to see pictures of how great you think this surgery will turn out, please, Google double mastectomy reconstruction. It’s not pretty.

I’ll continue to have bad days, such is the life of a metastatic breast cancer patient, but I won’t let them conquer my love for life and my family. I have to forge through to have the best days of my life.

Wherever You Are

I have had this feeling of impending doom. Seems morbid, I know. I can’t really explain it. I am just waiting for the other shoe to drop, I guess. All around me lately is other women, some younger than me, dying. Taken too soon by metastatic breast cancer. It’s crazy when I really think about the time I have left here on Earth, because frankly, when you have terminal cancer- ya can’t help but think about it sometimes. If I’m lucky, I’ll live 20 years with this disease, but I will only be 50. I will get to see many things that the kids accomplish like graduating high school, and going off to college but I will miss their budding future. Chances are I will never see one of my grandchildren and more often now it hurts my heart to see grandparents interact with their grandchildren because I know it will more than likely never be me. As this wretched cancer would have it, I estimate I have 5-10 years left. There’s just too much in my bones, it will spread further at some point. It’s just so hard to see a future that has me in it.

Part of this ominous perception is in part due to my overall current health. I am sick. And I am so sick of being sick. Every day I am nauseated to the point of being drove in to my bed, unable to move for hours. I feel like I have a rock of acid in my stomach and it hurts so bad that it brings me to tears. I have diarrhea 7-10 times a day every other day, no matter what I eat or don’t eat. And if I am not going to the bathroom, I feel like vomiting. I thought to myself the other day, “This must be what the end feels like”. It’s no way to live. Tis' the life of a metastatic breast cancer patient: ups and downs, happy and sad, sick and not. 

It was the worst on Mother’s Day. Of all days for it to happen, a day I want to bathe in the love of my family- it had to happen that day. I spent most of the day sleeping and in bed. Steve had to put the kids to bed and Stephen fought him so hard. He cried and cried for me. “But we have to sing our song” he cried. And then I heard what would break my heart in two; my 4 year old son singing our song by himself. “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” We sing this together every night because I know one day I wouldn't be able to sing it and I want him to have that memory . . . always.

It’s as if I am prepping my children, subconsciously, for life without me. Because one day the time will come but I don’t want them to be sad. I want them to remember how much love I had and always will have for them; and that nothing even death can take away my love. 

I wanted you more than you ever will know

So I sent love to follow wherever you go.

It's high as you wish it. It's quick as an elf.

You'll never outgrow it...it stretches itself!

So climb any mountain...climb up to the sky!

My love will find you. My love can fly!

Make a big splash! Go out on a limb!

My love will find you. My love can swim!

It never gets lost, never fades, never ends...

if you're working...or playing...or sitting with friends.

You can dance 'til you're dizzy... paint 'til you're blue...

There's no place, not one, that my love can't find you.

And if someday you're lonely, or someday you're sad, 

or you strike out at baseball, or think you've been bad...

Just lift up your face, feel the wind in your hair.

That's me, my sweet baby, my love is right there.

In the green of the grass...in the smell of the sea...

in the clouds floating by...at the top of a tree...

in the sound crickets make at the end of the day...

"You are loved. You are loved. You are loved," they all say.

My love is so high, and so wide and so deep,

it's always right there, even when you're asleep.

So hold your head high and don't be afraid

to march to the front of your own parade.

If you're still my small babe or you're all the way grown,

my promise to you is you're never alone.  

You are my angel, my darling, 

my star...and my love will find you, 

wherever you are.

~ Nancy Tillman