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.

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.

I just want a break.

A break.

It’s the only thing I’d like. A span of 3 months where I didn't worry about cancer, doctor’s appointments, surgeries, medicine, therapies or anything else but my kids, my husband, my dog, my home and my family. You know, those normal things people worry about- I’d like to worry about that. Apparently it’s too much to ask for.

The last time I left you, I was starting physical therapy for my hip metastases and a compression fracture in my spine. Getting a second opinion for a double mastectomy would be on hold for a couple months. Well, it’s going to be a lot longer than that now . .

Our dog started not doing so well after one of her shots in September. We had her to the vet every other day for weeks trying to figure out what was plaguing her. She started itching, became lethargic, was losing hair; we just couldn't figure out what was causing it and nothing was helping. After about 3 weeks, she was diagnosed with an immune disease which was causing her to not be able to control skin mites (which every dog, animal and human have). Thus causing a severe skin infection. For a month straight she needed doses of Benadryl, Pepcid (because she wouldn't eat) her antibiotics, her medication to treat the mites, and a bath every other day. She has gotten skin scrapes every 6 weeks along with new doses of medication, which causes neurological side effects. She won’t be deemed “cured” until it has been one year since her last clear skin scrape. We were finally able to get her scheduled for a spay that we had to put on hold because of her infection. She has been doing better lately, but the added stress of a dog with special needs was a lot to handle. 

As if the cancer and the dog weren't enough to make me crazy, I was also trying to figure out why it seemed that Stephen wasn't making any improvements with his speech. I’m going to skip over exactly how this came to be and get to point. We took Stephen down to the hospital for an evaluation, where we found out that he had a submucous cleft palate. The boy has had numerous doctors, therapists and specialists in his mouth since he was born and it took this guy all of 2 minutes to diagnosis him. Of all the times I felt like a horrible mother for putting my health first and not his, for blaming myself for him not making improvements, feeling wretched about him getting kicked out of therapy for not improving- it was all answered in one day and I realized: it wasn’t anything I’ve done. I didn’t fail him. The specialist said no matter what we would have or wouldn’t have done, he would have never made any improvements. In fact, since this was caught so late, therapy has had the reverse effect on him, actually making his speech worse. Now the problem lies in that Stephen only knows the incorrect way to produce sounds because he has compensated for so long trying to make the right ones. I just cried. I was happy to know and devastated at the same time. He will have surgery in January, which is a simple surgery. It’s the recovery that will be tough. He will be in the hospital for a little bit and on a liquid only diet for 2-3 weeks. Then he will move to a puree diet for 2-3 weeks, all while he is in arm braces so that he does not stick anything in his mouth. If he is cleared at a 3 month post op checkup then he will have to go in to intensive speech therapy- where he will have to re-learn how to speak all over again. His recovery time will be around 6+ months. Given our family history, and Stephen’s extensive list of different diagnoses, it was suggested that he be tested for a genetic mutation called 22Q Syndrome.  The deletion or duplication of the 22Q chromosome could be the result of over 200 varying disorders. Some children may only have a few, and some kids many. Given Shannon’s history of the heart and diaphragm defect, Stephen will need an echo-cardiogram to check his heart. We will have some baseline labs drawn and then he will meet with a genetic team in January to discuss the syndrome and have a special panel drawn to check for chromosomal abnormalities. If this is what he does have, then it means a long road ahead of us. 



I have been so busy scheduling appointments for Stephen that I have been working on this blog post for over a month. I waited so long in fact, that it seemed that more things just piled on top. Steve had been having a lot pf pain in his knee for a while and I finally made him an appointment to go get checked out. Yeah- he has a fractured fibula and torn meniscus and ACL. He is in a brace and off work now for 7 weeks. He has surgery tomorrow.

Did I mention Molly has surgery Thursday? Oh and SJ's echo-cardiogram down at Children’s at the crack of dawn the same day. Aandddd I got a call from my Endroconologist that said I was in menopause. Dude, I’m 30. And menopause sucks. This all sucks.

Everybody says “You’ll be fine”, “This will pass”, and “You’re strong”. I know all those things. However, don’t you think it’s a bit much? I am losing my damned mind! Literally losing my mind- I lost my car keys a couple weeks ago and had a complete meltdown like a 2 year old's temper tantrum.


I just want a break. I’m not sure why this has been the icing on the cake for me thus far, but I have a lot of questions that I normally didn’t care to understand. I don’t understanding suffering or grief. I don’t understand why some go their whole lives with no tragedy and others, like myself, are modern day Jobs. I can handle one thing at a time but not twenty. I am finding myself slipping back in to a depression. There is so much going on. Too much. It’s hard to remember things. It’s hard to enjoy things. It’s hard to get motivated. It's just hard to live.


There’s oncologists in Hawaii, right? I want to take a break there.

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.

A Rainbow After the Storm- Literally.

Warning: This post contains graphic material

The last time I left you I was just starting radiation and my mom was just released from the hospital. I am happy to report my Mom has been doing great at home and has started to make a valiant effort in taking better care of herself. In the midst of all of these things just pouring over me; the pain, my mom being hospitalized, and the crazy amount of stress a rainbow appeared . . . literally. It was snowing, and it was freezing outside and out of nowhere this rainbow showed up. I snapped the picture above of the rainbow over our house. It was as if God was sending me a direct message: "I promise it will be okay" He whispered to me. He said it would be okay, he didn't say it would be easy.

Within a couple days of radiation I felt the fatigue hit me pretty hard. At first I wasn't sure if it was fatigue from radiation or from life in general. The girls became very sick and had spiked fevers and kept me up all night vomiting. I had noticed I also became very nauseated and was barely eating. I thought maybe I had caught a little bug from them. Every day we were trying to find someone to watch SJ and one of the girls so I could head over for my radiation treatments and every day my stomach issues seemed to become worse. I kept reminding myself "You only have 10 fractions; you can get this done, easy-peasy lemon squeezey." I felt the start of a sinus infection coming on, but I trekked through. Last Monday I had to take Lily to the doctor, her fever had gotten above 103 and she had eaten in days. I couldn't make it to radiation, I hadn't slept and I was feeling worse and worse. Well, I was not prepared in any way for what would come next. The following morning, my stomach had started to cramp very bad. I went to the bathroom and didn't leave for a solid hour. My stomach just tried getting whatever was in me out, whether I had to go or not. My whole body seemed to wretch from my mouth and my bum. I couldn't stop going to the bathroom. It wasn't right. The cramps were horrendous. They were worse than childbirth. I screamed in pain. It was unlike any pain I had ever felt. It just wasn't right. And when I wiped- there was blood. Steve rushed me over to the Radiation Center where I seen the doctor right away. Based on my symptoms and a rectal exam, I was starting in to bowel damage. Unfortunately, radiation kills cancer cells but it also damages normal tissue cells. Since I was having my pelvis radiated, my colon, rectum and bladder were all susceptible to radiation damage. The doctor put me on a low-residue (low fiber) diet and gave me two extra days off from radiation. I followed it for a couple days and was feeling better. It seemed to pass as quickly as it came. By that Friday it started all over again and if it was possible; hurt worse than last time. There was more blood and mucus. I assumed the episode was just me not listening to the doctor and eating McD's one day that I felt better. "That's what you get" I thought to myself. Since it was so late in the evening I figured I would just tell the doctor on Monday and would be okay through the weekend. My nausea got worse over the weekend and I was eating once a day. My stomach was so upset I physically could not eat. I only had one more fraction of radiation. I could do this. 

When I went in for my last radiation fraction Iz Kamakawiwo'Ole version of "Somewhere Over the Rainbow" played while I laid there for treatment. It is one of my favorite songs of all time. Here it was again, the rainbow, and a whisper: "It's not going to be easy, but it will be worth it and it will be okay". When my treatment was done I sat up by myself, unassisted. I got done from the table by myself. The radiation seemed to have done its job and my pain from the tumors in the pelvis had significantly decreased. I no longer had a constant pain and could lay flat on a table with minimal pain. This, of course, did not come without cost. 

The next day, the cramping started again. I sat in the bathroom for over an hour this time screaming and crying in pain. My whole body shook. I hadn’t eaten, I couldn’t stop going to the bathroom and the pain was so severe I just knew there was more damage than what anybody thought. It was worse than childbirth; and when a woman says that that’s some crazy-ass pain. Even though my body had nothing left to get out, I still dry heaved and my belly still had spasms as if it did. My doctor sent me straight to the ER. There was enough blood and mucus to be concerned but not enough that I needed a blood transfusion or needed to stay. It was quite apparent that I had bowel damage, which if not treated could lead to more serious complications. I was given a slew of medication to help stop the cramping, ease my pain and heal my colon and rectum.

If you wanna test your relationship with someone, ask a friend to help you administer medicine rectally and see what they say. Hehe! Although I had one friend volunteer and my mom never hesitated to say she’d help me. But it’s cool, no mom, friend or husband of mine is shoving anything up my butt. I don’t care if I have to try for an hour, I will be administering this medication by myself. 

I had another mini-meltdown. It is utterly amazing to me what I have to put my body through in order to either kill or shrink this stupid cancer. In order to live longer and have a better quality of life I have to subject myself to fatigue, diarrhea, rectal bleeding, nose bleeds, mouth sores, nausea, vomiting, hair loss, psoriasis, weight gain, broken nails, numb toes, optic nerve swelling, loss of vision- that’s just insane. Pity parties for me come and go but this one is officially over. I am done with radiation. 

The real test comes next week. I have all of my scans to check on my tumors. IF everything is stable, we may start to discuss planning my bi-lateral mastectomy. I just keep remembering the rainbow. This will all be worth it. 

I hear babies cry and I watch them grow,
They'll learn much more than we'll know
And I think to myself
What a wonderful world world

Someday I'll wish upon a star,
Wake up where the clouds are far behind me
Where trouble melts like lemon drops
High above the chimney top
That's where you'll find me

Mon Valley Relay for Life

I was really excited when a friend asked me if her son and his friends could form a American Cancer Society Relay For Life team in my honor! Since the past month has been so hectic, I haven't had a chance to post about it yet and it's in 2 weeks! Hard to believe it's almost May!

Every day, the American Cancer Society provides free information and services to cancer patients throughout their journey. The organization is investing in crucial research to prevent, treat, and ultimately, cure all cancers. The ACS has played a crucial role in educating me through my journey. Their services have helped us a great deal.

Please consider joining 'Team Kate' at this year's Relay for Life, Friday May 2nd at Charleroi HS Soccer Stadium. Opening Ceremonies start at 10am. Registration begins at 4pm and the Survivors kick off the relay at 6pm.

If you cannot join us for the Relay, I ask that you each donate to our team. The Relay for Life is the largest not-for-profit event in the world. Meaning, all of this money is used for research and services!

Also, if you or a loved one has been affected my cancer, you can also purchase a luminary to be lit at the Relay and the donation will go to our team's goal.

Click on the link here to get started!

Radioactive

All I wanted to hear on Thursday was "no more chemo".

I know that my cancer will return full force again; it is just a matter of time. Since I am missing the gene that suppresses one’s tumor growth in the body (Li-Fraumeni Syndrome), I will always been threatened with new cancers or the progression of my breast cancer. I was doing so well, chemo worked great but it was horrible. I felt horrible and I looked horrible but it did its job. Mostly all of my tumors showed vast improvement in regression; which is great but I hated chemo. Did I say that already? Well, I did, I hated chemo. I went 11 straight months, every week- I deserved a break. I guess we just hoped the cancer would stay at bay, at least for a while.

I feel bad for my Oncology PA, I am pretty sure I hit her with close to 45 questions I wanted answers to. She wrote them all down on a piece of paper. We discussed some there, and some needed to be answered by “the man” . . . my oncologist. When he walked in the room, he said to me “Why should you keep living with this pain?” I don’t really have a logical explanation why. I can’t take pain meds; I cannot function as a wife and mother on them. I will not be attached to a pain patch that makes me sick and makes me have to take more meds to counteract the reactions. I most certainly will not sit my ass on a couch and cry and complain every hour of every day. I would rather just deal with the pain because the alternatives outweigh the benefits. “Let’s try some radiation.” he added. Radiation will reduce the size of the lesions and alleviate my pain. This is a palliative treatment. It will not cure my cancer; it is simply being used to relieve symptoms.

Now, radiation for me is a complicated. There are certain guidelines to follow when dealing with LFS; one of which being to avoid radiation therapy if at all possible. Here’s why: there is a small chance that radiation can cause secondary cancer because of the radiation. Well, if a patient with a P53 gene can get a secondary cancer due to the effects of radiation, the percentage is even higher for a person without that gene. If you are still following me, because of my LFS I am at in increased risk of developing another type of cancer normally, but having radiation would double that chance.

Doctor’s don’t normally like to be questioned, but mine takes it in stride. I said, “Uh, what about the LFS?” and he just smiled. The plan is to start me on radiation, very small doses of radiation, for one session. One session could be 10 or so rounds of radiation. I would go every day for a couple weeks. There should not be any higher risk to me with this low amount of developing any new cancer. I will have radiation a lot closer to my house, and meet with the Radiation Oncologist next Tuesday. This doctor ultimately decides exactly how much radiation I will receive- my oncologist simply recommends what he would like to me to have.

This next step is frightening, but it’s better than chemo, it’s better than being in pain and it’s better than being dead. If it’s gonna help then I’ll rock it in good ol’ Kate fashion.

I’m gonna be Radioactive, radioactive.

The Potholes in the Road

Life is full of bumps in the road; mine however, seems to be filled with potholes. As soon as one pothole gets patched, another storm brings new ones.

I have posted numerous times on our Facebook page how I have been suffering from this horrific back/hip pain. It’s more like the back of my hip, my pelvis, which has a stabbing pain in it just about every single second of the day with little to no comfort. I have endured the pain, not taking pain meds because they make me loopy. I simply cannot afford to be out of it while being a full time mommy and wife. I started seeing a great orthopedic doctor who seemed to generally be interested in helping me. First, he wanted to pinpoint my pain with a MRI of my pelvis. That MRI was the absolute worst non-invasive testing I have had done. The test itself was about 45 minutes long, and I had to lay with my arms above my head on a hard table in an itsy-bitsy tube. Halfway through I became desperately sick because my arms had started to hurt tremendously. I am stuck in this tube that I barely fit in and it is in that moment that even though I am not, I feel myself becoming claustrophobic. I just kept singing in my head “This girl is on fire . . .” The song empowers me. Needless to say I was elated to be done with that test and never once gave a thought to the reason my prescription said I was there: “To rule out Metastatic Disease”.

I figured today when I went in to have my results read I would be leaving with an answer besides the one I received. There are new lesions in my iliac crest (pelvis). Sigh. These are not previously noted on any scans, giving the reason to suspect the cancer has progressed. This is the reason for my pain. The lesions are exactly where my pain radiates. There is nothing my orthopedic doctor can really do for me now. He ordered some PT (physical therapy) in hopes to desensitize the area so I am not in constant pain. I have an appointment scheduled with my Oncologist on Thursday to discuss these new findings. I know it’s selfish but I seriously just don’t want to go back on chemo. I just feel like I am starting to feel “myself” again. I started losing weight, I have hair again, and my life doesn't revolve around chemotherapy and doctor’s appointments every week. I am ready for this pothole to be patched up. Do you think I could tweet Pittsburgh’s 311 Service to take care of this? Augh, I didn't think so.


James 1:12 
Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.