October 31: And Elsewhere on the Web

My story ran in other blogs as well this year.

First, there was Young Survival Coalition, which ran my story on their social media sites on October 13th, which is Metastatic Breast Cancer Awareness Day.

Metastatic From the Start, featured on METAvivor's blog

I was featured on Telling Knots, in a two-part entry: Part I and Part II


* * *

There were a number of good blog entries elsewhere on the web this month too.

Think Before You Pink

Pushing Up Daisies

Let's Stop 'Dumbing Down' Breast Cancer Awareness Campaigns

When TODAY Said I Was 'Not Bald Enough' 

Why some women with breast cancer dread October

Attack of the Pinktober Sharks

A Day in the Life of a Stage IV Metastatic Breast Cancer Patient

Project Metastatic Breast Cancer

The Problem with National Breast Cancer Awareness Month  

Journeying Beyond Breast Cancer - the MBC Edition

Living with Stage 4: The breast cancer no one understands


Having breast cancer means being ‘aware’ every day, not just in October 

October 30: A Recap of the Month

There are a lot of good blog entries out there about metastatic breast cancer, but by far one of my favorites is What Have We Learned About Metastatic Breast Cancer, Charlie Brown? It's comprehensive and witty, and one line especially stands out to me.

When I was first diagnosed with metastatic breast cancer, I wanted to set the world on fire.

This is where I am right now, trying to set the world on fire with advocacy and awareness. I hope I never lose my passion for speaking out and trying to get more funding for metastatic research. I hope that is my legacy, to set the world on fire.

So what have we learned this month?

30% of early stage breast cancers go on to become metastatic. Even Stage 0 is at risk. Once there is cancer in your body, you are at risk of developing metastasis. And there is no cure for metastatic breast cancer. Only treatments in hopes of prolonging your life. An additional 10% more are already metastatic from the time they're diagnosed. That means 40% of breast cancers are metastatic.

155,000 people in the USA are living with metastatic disease.  The US cancer registry does NOT track breast cancer recurrence so there are no reliable numbers for how many new cases of metastasis get diagnosed each year.

40,000 people die from metastatic breast cancer in the USA annually. This number has not changed over the years. Despite all the early detection and awareness, the mortality rate of breast cancer has remained stable. We are no closer to a cure than we were 40 years ago.

Only 2% of the funding for breast cancer goes to metastatic research. All the rest goes to early detection and awareness programs, and of course, company overheads and CEO pockets. If you want to make a difference with metastatic research, be sure to donate to a company where 100% of the donations go to metastatic breast cancer, like METAvivor.

The average length of survival for people diagnosed with metastatic breast cancer is 3 years.

The primary locations of breast cancer metastasis are: brain, bones, liver, lungs.

Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment.

Women as young as 11 years of age, as well as men, can be diagnosed with metastatic breast cancer. There is no such thing as 'too young' or 'too male'.

Each woman and her prognosis is different. There are more than 18 different sub-types of breast cancer known to doctors, and each of those forms can have variations in things like hormone receptors and genetic factors.

Only 5% of women with breast cancer test positive for the BRCA 1 or 2 gene mutation.

Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

For more information, please read 13 Facts Everyone Should Know About Metastatic Breast Cancer and also the 2013 MBC Fact a Day - 31 Days in October.

Help us out in our fight for research and better treatments. Donate to METAvivor.

October 29: Dumb Stuff People Say to People With Metastatic Breast Cancer

Today, I thought I'd share one of my favorite videos. It's a collection of dumb and broken shit people have said to people with Metastatic Breast Cancer. You might recognize some of them from the Bingo game card featured on October 8th. Some are just pinkwashed ignorance, while others are jaw-droppingly callous.

One of them that irks me the most is the implication that if we have metastatic breast cancer, then we must not have been taking good care of ourselves. We must not have been exercising enough, eating the right foods, drinking the right beverages, doing the right thing.

Have you heard yet about the Bald Ballerina?

At age 23, Maggie Kudirka, a dancer at Joffrey Ballet School, was diagnosed in June of 2014 with breast cancer. But not just breast cancer. She was diagnosed right out the gate with Metastatic Breast Cancer. And she is a ballerina, and has been since the age of four.

In case you're not fully aware of how much physical training and work goes into being a ballerina, this Under Armour advert highlights what a grueling sport it is. Look at the shape she's in. That's normal for a ballerina. If someone so young and so fit could get metastatic breast cancer, what does that say about the rest of us? It's not our fault.

We might still have our hair. We might "look fine". We might even be able to continue working. But that doesn't make what we have any less serious. We have Stage IV Metastatic Breast Cancer. There is no cure. There is no point where we are "finished" with treatment if we want to continue to live a bit longer. This is as serious as it gets. We might seem fine but we will never BE fine. This is our new reality.

And no, you can't have my flat-screen TV when I die. What is wrong with you?

October 28: Guest Blogger Rachel Boullion Wickman

Guest Blogger Rachel Boullion Wickman is sharing with us the perspective of a young mother living with metastatic breast cancer.

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Being Cancer Mom (she’s like Super Mom, but on the couch)

When I was 32 years old, I became pregnant for the first time. I have always wanted to have kids, but seeing as how I was getting “old” and had been through a divorce a year or so earlier, thought it may never happen. Then I met my husband Chris in 2007, and immediately got pregnant with my son Riley. I was overjoyed! Never did I think I could love someone so much as I did that little munchkin. My joy at being a mother made me long for another child, so when Riley was 9 months old, in January of 2009, I became pregnant again. Things were a little more complicated this time around. I had gestational diabetes, so my go to drug of choice, chocolate, was off limits. I was super tired. I was achy. I attributed all these things to being pregnant again so soon after having a baby, plus the added stress of a 1 year old running around the house.

In July, 2 months before I was due, I found a lump in my breast. Not terribly big, but it was there. I showed my OB/GYN, who examined it manually and declared that it seemed triangular and it was probably a blocked milk duct. She advised me to put hot compresses on it, which I promptly forgot to do. Two months later, my little man Eli was born. I was super stoked, but super exhausted, and had a fairly rampant case of postpartum depression to boot. So when I went for my 6 week checkup after having him, never once did I even think to mention that the lump was still there. And never once did they ask about it.

Fast forward another year (!) to my annual checkup... the lump is still there. The alarmed look on my OB/GYN’s face did nothing to alleviate my anxiety about it. It’s now been a year and a half since the lump presented itself, and it’s begun to grow and cave in my nipple area a bit. They sent me for a mammogram and ultrasound, then a biopsy and PET scan. All showed cancer... EVERYWHERE. My skeleton was riddled with tumors. I was devastated. My thoughts immediately went to my boys, who were 1 and 2 at the time. Would they know their mother at all? Would they remember my laugh, my sense of humor, my fits of anger? Would Chris remarry and the boys think that this “new” mom was their mother, the one who carried them lovingly in her belly for 9 months singing to them? I just couldn’t let that happen. I couldn’t.

Having had the BRCA genetic test done, I found out that I do indeed carry the BRCA 2 mutation. So now not only do I have myself to worry about, but my family as well. In my mind, I just kept thinking, “what have I done?” I decided then to have my breasts and ovaries removed to give myself a fighting chance. I had 16 rounds of chemo to stave off the monster. When I realized that my hair was falling out, we had a head shaving party and let my boys cut my hair off so it seemed like a fun time rather than a scary one.

Stock image. Photo credit www.candygibbs.com

They loved it! To this day they ask if they can do it again (hopefully not, but realistically it’s probable).

We just try to live one day at a time as a family, and take things as they come.

How does this affect the boys you might ask? Well, they’ve never known anything different. They’ve grown up knowing that Mommy goes to the doctor a lot, and sometimes has to have stuff done like surgeries to help the doctors fix her. They know I take my meds every day. They don’t really know what cancer is, per se, but I’ve explained to Riley when he asks that Mom has something inside her that’s messed up, but that it isn’t something he can catch, and we can still hug and give sugars all the time. I’ve learned to appreciate little things that most people take for granted... the first day of Kindergarten, first lost tooth, first “girlfriend”. I’m hoping to see a first date, first dance, weddings, and grandkids, but know realistically that it isn’t likely. As my boys grow up, I try to make life memorable. I am relieved that I’ve lived as long as I have, so I know they’ll have some memory of me now (they’re currently 5 and 6).

 It’s difficult sometimes knowing that I can’t do all the things “normal” moms can do. I can’t run in the yard with them for more than a minute or two without being completely exhausted. I suffer from serious fatigue, so much so that my patience is nil, and I’m known to yell at any given time, completely hurting their feelings. I hate that this is the life they’re living, and hate that they now have to worry if they have daughters that they too will get this shitty disease.

Please let there be a cure soon so this legacy I’ve imposed on them ends.

October 27: Guest Blogger Knot Telling

Guest blogger Knot Telling is sharing with us another perspective of someone else living with metastatic breast cancer. You can follow her journey at her blog, Telling Knots.

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Capital Punishment and Pink Rocks


Condemned prisoners in Japan are not told the date of their execution until the morning of the day itself. According to many experts, this is a contravention of the International Covenant on Civil and Human Rights. The parts of the Covenant that concern us here are Article 7 (“No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”) and Article 10 (“All persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person”). In other words, not telling condemned prisoners when they will be executed until a few hours prior to their death is considered to be inhuman and an affront to human dignity. Torture.

I had an immediate visceral reaction when I first read a 2007 BBC News report about the Japanese system of capital punishment, and I have never forgotten it. Living with MBC is not unlike living under sentence of death and not knowing how long you have until the sentence is carried out. The stress can be a kind of psychological torture.

There are many kinds of physical torture. It’s been reported that regimes such as the Nazis in the 1930s and 40s, the gulag in the Soviet Union and North Korea today used forced meaningless labor as torture, tasks like carrying heavy rocks from one place to another and back again. Sometimes the stress of living with MBC feels like carrying around a load of rocks.

Yes. I sometimes feel as though an arbitrary authority is forcing me to carry large rocks from one place to another. Sometimes my load is reduced and I can breathe more easily, relax my muscles, sleep through the night. At other times, I have the sense that more rocks are being added to my burden.

Save the tatas!
A rock.

Early detection of breast cancer saves lives!
Another rock.

Breast cancer can now be cured!
Another.

If you have a positive attitude you won’t die of cancer!
And another.

Buy this pink teapot/garbage can/mouse pad for breast cancer awareness!
Yet another.

Every October my burden gets so much heavier. Listen:

*Breast cancer is not about breasts. It is a horrible disease that kills both men and women. It is not about saving sex appeal; it’s about saving lives.

*Early detection of breast cancer can mean the treatment is not as difficult, but it is no guarantee that it won’t recur. In fact, about 30% of everyone who has breast cancer—regardless of the stage at diagnosis—will have a recurrence and metastasis.

*There is no cure for breast cancer. None. There is treatment that can lead to remission or an NED (no evidence of disease) condition, but there is no cure. No one knows who will be in that 30%  and who will not. For the unlucky 30% there is no cure. We will have breast cancer until we die, probably of breast cancer and its complications.

*There is no scientific research that shows any relationship between mood or attitude and recovery from cancer. At this point, there is no way to predict with any degree of scientific certainty who will live and who will die. Some cheerful, positive people die. Some miserable, complaining, angry people recover. Some people who have variable moods live and some die. Mood and attitude do not correlate with, let alone influence, recovery.

*Pink merchandise has become a common marketing ploy, especially in October. Much, if not most, of the pink “breast cancer awareness” merchandise that is sold profit manufacturers and vendors and no one else. If you like pink, go ahead and buy it, but if you want to contribute to the fight against breast cancer be under no illusions. Unless you have verified that a reasonable portion of profits goes to a reputable foundation or charity, make your donation directly.

The pink rocks that are added to my burden are just as heavy as the others.

Even if I didn’t have those extra rocks to carry around, the stress of this indefinitely postponed yet certain death sentence is psychological torture. I am in my eleventh year of it, and I am tired.

I am tired of pain and I am tired of the narcotics that treat it. I am tired of having a permanently compromised immune system. I am tired of massive fatigue.

At the same time, I want to live every day that remains to me. It is the frustration at not being able to do that the way I’d prefer that makes me tired and angry. Nevertheless, I have taken steps to have the best quality of life I can. I have made arrangements for people to come and help me with the tasks I can no longer do (housework, garden work, errands in town). I enrolled in a distance learning course. I stopped exams and treatment, other than comfort measures like pain management.

In other words, I found the little power that is left to me in the face of the arbitrary “authority” (fate? genetics? environment?) that condemned me and sentenced me to the forced labor of carrying rocks until the unknown date of my death. I draw on that power as much as I can—some days more, some days less—in order to live as well as I can until MBC causes my death.

October 26: Guest Blogger Jennifer Eisenbart

A journalist for a newspaper in Wisconsin, Jennifer Eisenbart became active in spreading metastatic breast cancer awareness after it had an impact on her own life. Note: This column was originally printed by Southern Lakes Newspapers Oct. 2, 2014. It is reprinted with the permission of SLN, and should not be reprinted further without permission.

Additional note: Zanne is the nickname I go by with my friends. It's short for Susanne, using the Americanized spelling instead of the German spelling.

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      To me, breast cancer isn’t about statistics, or stages, about survival rates, or about October and the readiness of pink-ribbon items.

      For me, breast cancer is about names.

      Judy and Sharon – two friends who helped me through some of the toughest times of my life. Both died of metastatic breast cancer; one this year, the other more than 12 years ago.

      Then there’s my friend Zanne, who I met writing fan fiction and who just got married this past weekend. Earlier this year, she was diagnosed with stage IV breast cancer.

      As she constantly reminds me, in her case at stage IV, there is no cure. She’s fighting the cancer with everything she has, and there’s a good chance she will be around for a long time.

      But there’s also the inevitable fact that the cancer cannot be eradicated, and that sooner or later, it will probably take her life. And the real kick in the pants? It won’t be the breast cancer that kills her then – not technically. It will be cancer that will have spread to her lungs, her lymph nodes, her brain, or even her bone marrow.

      Cancer goes where it can to escape and survive.

      I get behind and support breast cancer awareness in October – and the goals of finding a cure and stopping this disease from taking the lives of people I know. I remain optimistic that, perhaps in my lifetime, we will find a way to take breast cancer from the scary, incomprehensible secret to just another disease.

      In the meantime, though, I want to spread the word about stage IV breast cancer – aka, metastatic breast cancer. According to Metavivor, a site dedicated to women suffering from stage IV breast cancer, here are the facts:

      • Metastatic breast cancer receives approximately 2 percent of the funds raised for research.

      • While only 6 to 10 percent of patients are diagnosed with stage IV breast cancer, 30 percent will eventually progress to stage IV.

      • The primary focus of breast cancer research is prevention and early detection. That does nothing for the women diagnosed with stage IV – either in the beginning or later.

      Metavivor is working hard to address that discrepancy. The organization says it believes that if 30 percent of the women with breast cancer are stage IV, then 30 percent of the funds that are raised should go to stage IV research.

      It’s not a bad thought. Breast cancer in and of itself is a devastating disease. To free yourself of the disease and to have it reoccur – which means it has automatically progressed to stage IV – or to be diagnosed in that stage makes it worse. To know that so little effort is being put into stage IV research is infuriating.

      I know what my friend Judy went through the final days of her life. I know, because I was there. I watched as she struggled to breathe, finally being put on a bi-pap machine and being placed on numerous drugs to stabilize her condition.

      Those drugs were discontinued, the oxygen switched to a nasal cannula the morning she died. The reason was because there was no hope. The cancer had invaded her bones – destroyed her bone marrow. The reason she had so much trouble breathing was because her body wasn’t producing the red blood cells she so desperately needed.

      Would Judy’s end have been any different with more research – with more funds put toward stopping cancer that has reached stage IV? I don’t know. Breast cancer isn’t alone in its stage IV challenge. Any form of cancer that reaches that point is difficult, if not impossible, to cure.

      But increasing survival rates? Extending survival time? Eventually figuring out how to get rid of Stage IV cancer or keep it from reaching that stage? I think those are laudable goals. And I hope, for everyone who has reached that point, that cancer research can take that step.

October 25: Guest Blogger Micchi

A dear friend of mine, Micchi's life has been touched by metastatic breast cancer several times over. I asked them to share their thoughts and experiences. This is what they wrote.

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When my best friend was diagnosed with breast cancer, it was a kick to the gut but a manageable one. Yes, we were all blinded by the pinkwashing, and convinced that she would beat this and be cancer-free before we really knew what was happening.

We learned pretty quickly that that was likely not an option, when the staging and the reveal that the cancer had spread came down. This was a terminal diagnosis. It might be next year, it might be next decade, but eventually, this would be her downfall.

I was lucky. I'd been dealing with my mother's slow progression of illness for several years by this point. I already knew that, with a terminal illness, one bad day could turn into a month of bad days pretty easily. I'd learned that even if that cold was easily treated, one misstep could mean pneumonia and a hospital stay.

It's terrifying, and it's heartbreaking.

On top of that, for someone affected by metastatic breast cancer, pinkwashing has done no favors. Any time I talk about my friend, there's the quiet, worried "Oh, what kind of cancer does she have? Breast cancer? Oh, but they're made so many strides on breast cancer!"

...Yeah, no, not really.

Metastatic breast cancer patients face a unique hurdle: erasure. Their fight, their struggle, their pain is constantly erased by races for The Cure! and how beatable breast cancer is!

And that erasure needs to stop.

October 24: Guest Blogger Jennifer Kraus-Dahlgren - Part 2

See October 23rd for Part 1 of Jennifer's guest post on metastatic breast cancer, and what it's like as the partner and caretaker of someone living with MBC.

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I remember that she started receiving care packages very shortly after that. Friends and family of hers stepped up and sent her little things, a card, some money, ginger-based products to stave off the normal nausea that'd come with chemo. Little things to brighten her day. I was almost never sent anything. I was rarely even mentioned as being kept in thoughts, prayers, hopes. Everything was about her. And it should've been, as far as I was concerned. She was the one that was ill. She was the one that needed to fight. She was the one that was loved.

But I started to feel forgotten. I was the one that'd help her get to a trash can or the toilet in time when the nausea hit. I was going to be the one carrying things for her, doing shopping and laundry largely by myself as chemo progressed and she started losing her strength. I was the one that'd have to go through her belongings and decide what to let go of, as if I were letting go of parts of her. I was the one that was going to stand at that grave as the grieving widow.

I never begrudged her the attention. She needed it. She was the one that was ill. And she never forgot me. She held me every day. She reassured me every time she saw me crying that she would beat this, that she wasn't leaving me. But she was the only one. Nobody else even talked to me about it. No one asked how I was doing, if maybe I needed a hug, or a day out to get away from the appointments and the material things I'd have to sort through, the things that I looked at every day and thought who they should go to.

I was braced to be alone, and in so many ways, I was already alone.

My reality had changed, and I didn't want to live there anymore. I desperately wished I could close my eyes, wiggle my nose, and tap my heels together and everything would change back to how they were. Back to her being able to work, to a time when our excursions out of the apartment could be for something silly, before the doctor appointments and chemo took over. Suddenly, leaving the apartment meant leaving my little bubble of denial, it meant looking Death in the face and begging her not to take the woman I loved. Begging for her to be spared. For more time.

I keep hearing stories of people who leave their wives and girlfriends after a Stage IV diagnosis. Leaving when that woman needed them the most. In some ways, I can't blame them. It's terrifying, to watch someone you love slowly die. Being a caretaker can be one of the most thankless jobs in the world. The only one who really seems to get that is the patient herself. It hurts when the people around you ask your wife "how are you doing?" but don't even give a nod to your own pain. I can't say that I blame someone for walking out on that.

But I couldn't personally fathom it. I couldn't imagine Susanne having to go through those treatments alone, having to someday lie in a bed and pass away without the woman she loved holding her hand. I knew what it was like to be alone when you needed someone the most, I loved Susanne too much to be able to do that to her. To even let it cross my mind.

But being a caretaker is a thankless job. Nobody else seems to see how hard the caretaker has it. Nobody but those of us who have been there know what it's like to watch someone die. To watch their time slip away, knowing that there will never, ever be enough time left.

That was the reality I had stepped into with that phone call, late in November. It was a reality I hated. All the dreams we had, the ones we'd been able to continue to hang onto, even after our lives had already been irreversibly changed, they were gone. Time was working against us, suddenly. That black, ugly void where nothing makes sense and everything hurts yanked the rug out from under our feet. That was my new reality.

Just a month before had been Pinktober, with its messages of hope, of cures. Like so many other people, it'd fooled me into thinking that breast cancer was beatable, that it didn't kill people. They told us to hope. They told us to pray, they told us to feel bad when we didn't detect it early, as if it was the patient's fault that her cancer hadn't been diagnosed until too late.

Our dreams were gone. Her career, her chance at becoming a nurse, everything. It was all gone. All that was left for us was doctors and illnesses and an inevitable separation. Behind us, all those pasts, all those what ifs, shoulda coulda wouldas, they were gone. They were torn. They were vandalized and ripped and torn and taken from us and left behind as nothing but a future that we could no longer look for.

My reality had changed. And all I could think that it was my fault. If I'd only gotten her in earlier, if I'd only outstubborned her, maybe we could've caught it before it became Stage IV, could've beaten it. Could've had that hope. If I lost her, I had nobody to blame but myself. That if she died, it was my fault. Not getting her in early had been me giving her a death sentence.

One day, I will be looking up at the urn on my shelf and have to apologize because I'd failed her in the one thing I was supposed to do. One day, I'll be saying "I miss you, I love you, please come back." One day, my own life will be over, and I'll be left behind again.

But I try not to think of that day. It'll come, in the meantime, the best thing I can do is hold onto each and every precious second, to keep taking care of her, to keep loving her. That's all anyone can ever do. Hold on and love.

Hold on and love.

October 23: Guest Blogger Jennifer Kraus-Dahlgren - Part 1

You, gentle readers, have met Jennifer before, as Jen in my previous entries. I asked my wife to pen a guest post on metastatic breast cancer, and what it's like to be the caretaker and partner of someone living with MBC.

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The Life of a Caretaker

By the cold and religious we were taken in hand,
Shown how to feel good and told to feel bad.
Tongue-tied and terrified we learned how to pray.
Now our feelings run deep and cold as the clay.
And strung out behind us, the banners and flags,
Of our possible pasts lie in tatters and rags.
-Pink Floyd

I remember the moment we received the news very clearly. I can't remember what the date was, not even what day of the week it was, beyond not a weekend. Susanne knows, but I don't. It was November, the stores already had Christmas decorations up and cards and gifts and music was playing. The season of giving. The season of brightness and light and for some, a holy season. A season of gifts.

I'd known, the first time I felt that lump in her breast, that it was cancer. Something deep inside me knew. She insisted it was a cyst, she'd had one exactly like it on the other side, and it'd burst and drained, just like she expected this one to. I knew better. But I let her prove me wrong. I dismissed my concerns as paranoia. I grew up in a family full of life-threatening and/or chronic illnesses, I was always ready to expect the worst when something was not right with someone I loved.

But she showed no other symptoms of cancer, and she was too young. So I let her confidence keep me floating along.

But I knew.

I finally got her to agree to go see the gynecologist I'd been seeing for my birth control for a basic evaluation. The place was mostly donation-run, so we could afford it. They referred her to a doctor here in town to have it biopsied, or drained, if it was a cyst, as Susanne thought. I sat there in the procedure room with Susanne and the doctor, looking away because I get squeamish about medical procedures, but I was there. I heard the doctor announce that it was solid, not a cyst.

The word cancer loomed in front of me. I knew. It was there for two years, and I knew every day and night of those two years. But there was the chance that it wasn't malignant, maybe just fibrosis, nothing to worry about, something that could be removed and life would go on as normal.

It was a few days before we heard the news. I think I had to call the doctor, instead of getting a call from her. I'd grown more and more nervous as we waited. That word kept whispering in my ear. Cancer. Cancer, it said.

Photo by Marla Austin Photography

Finally, we found out. It was cancer. Any shred of hope I'd had disappeared. It felt like I stopped breathing, like my heart stopped beating in my chest and my lungs couldn't take in air and I wanted to die. Susanne was worried, staring at me for the news. I told her. She panicked. She started crying. And all I could do was numbly listen to the doctor. She gave us a referral to an oncologist here in town. There'd be tests. Medicines. Possibly surgeries.

My reality had suddenly changed. And I hated it.

I grabbed onto one tiny thread of hope at that point. After all, everyone knows that breast cancer is beatable. There's hope. Hope For The Cure, Pinktober said. It was everywhere, everyone knew that it was beatable. As long as she hadn't advanced to mets, we could shrink and remove the tumor, and she'd be healthy again, even if she had to wear a padded bra to keep from looking lopsided because one breast was half-missing.

There were days of tests. She had a mammogram to make sure it wasn't in the other breast. A PET scan to look for any signs of mets. A surgery for her port for the chemo infusions, and a liver biopsy. There was something on the PET scan that we weren't sure what it was.

I knew. She didn't just have cancer. She had mets. It was Stage IV.

My soulmate, the woman who'd stood by me through so much, through my own illnesses, through family problems and money problems and any other problem life could possibly send my way. She was there with me.

I tried to hold my breath after we found out there was something on the liver. I tried to pretend that if I just held still enough, if we stood there and counted our heartbeats until the danger had passed, that it wouldn't come for us. That it wasn't mets. That it wasn't the deadly stage.

But that voice, that part of me that knew, I knew this, too. She was dying. I was going to be left behind. I was going to be staring at another grave, like too many times before in my life, and I'd be talking to the wind instead of her.

Her oncologist confirmed it. It was Stage IV. He stayed positive, didn't mention that the average lifespan after Stage IV diagnosis was three to five years. He pointed out how many women with Stage IV went on to live even decades after their diagnosis. Susanne held onto that. I tried. I'd never been able to see living without her, not until we were little old ladies, living in an assisted living home and wearing goofy t-shirts and being annoying to the other residents and people working there with our random outbursts of laughter over nerdy, silly things that everyone around us would wonder what the hell we were talking about.

Suddenly, I was facing the idea that I'd lose her before I even hit forty. That I'd be a widow before we even got to marry. Someone else was leaving me. I was being left alone again, and I honestly didn't know what I would do without her. I couldn't see a future anymore. It was gone. I'd lost my dreams and my life already due to a psychiatric illness that took me away from the possibility of work, of a career, of school, but I could deal with that, as long as I had Susanne.

Now, nothing was there. It was just me. Just me and an elderly cat with Stage I kidney failure. That's all that was left.

Every day, I cried. I panicked. I made plans for what to do when the inevitable happened. I started trying to figure out what of hers to give away, what to send to charity, what to keep. I started looking at her wanting to say "I'll miss you" instead of "I love you." I did my best to keep that thought to myself. I was her main support, I was the shoulder to cry on, I wasn't the person to be doing the crying.

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Tune in tomorrow to read the second part of Jen's powerful essay, The Life of a Caretaker.

October 22: Interview with METAvivor's Lori Marx-Rubiner

I interviewed METAvivor president Lori Marx-Rubiner via email. These are her replies.

When were you first diagnosed with Breast Cancer?

Tuesday, February 4, 2002, after the worst weekend of my life. I had my biopsy on a Thursday and waited 5 LONG days to find out. I later discovered (while reading my chart) that the doctor knew that Friday but never told me. He was fired.

When were you diagnosed with Metastatic Breast Cancer?

Interesting that this date is less memorable – late August 2011, just about 2 months before my son’s bar mitzvah.

What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Honestly – relief. I had spent nearly 2 years watching a tumor marker rise, with scan after scan showing nothing. Without corroborating evidence there was nothing to do but wait. So when it finally showed up I was relieved and ready to get back into treatment.

How did you first learn about METAvivor?

NO IDEA! It’s always been there. I think I first bumped into CJ on the #bcsm twitter chat, long before I was diagnosed with mets.

When did you get involved working with METAvivor?

CJ and I met face to face at the NBCC Conference in 2011, I think. I started getting involved then, and became a board member about a year later.

How much progress do you think has been made for metastatic breast cancer research?

One of the biggest challenges is defining how we measure progress, and on what front. Women are living longer – this is good. There are some new-ish and emerging classes of drugs – also good. But as we move into genomic sequencing for patients, we’re finding how much more there is to know. We can test for genomic mutations, but in so many instances we have no idea what to do with the information. We aren’t funding MBC research at any greater a rate than we had been – still below a paltry 5%. And the system is pathetically cumbersome, with drugs taking a decade or more to get to market, despite our average life expectancy of about 2 years.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

That you die from it.

I know a breast cancer diagnosis strikes fear in the heart of anyone who confronts it. It get it. I’ve been there. But early stage disease doesn’t kill. Period. People need to understand that metastatic breast cancer kills, and that one in three patients – including those who believe they were “cured” from early stage treatment – get it. Death, death by disease, is never easy to face. But sweeping MBC under the pink carpet isn’t going to change the numbers. We’re still losing 40,000 Americans a year, while the pink party continue. It’s shameful.

What was the hardest treatment you've been through to date? The easiest?

Probably my chemo – FEC100. It was a stronger dose than they are using now, I think, and it knocked my on my ass. I had a 3-year-old to keep up with at the time so the worst of it was the exhaustion. It also left me feeling like a failing, dying mother. (See comments about early stage treatment above…I drank the Kool-Aid too!)

Easiest? I guess my time on Tamoxifen. It left me hormonal and spacy, but it interfered less with daily life and easy living than the others.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

Talk to your doctor! There isn’t a side effect too silly to address, and you don’t get points for suffering in silence. If your doc’s solution isn’t working, seek others. Don’t be afraid of complementary medicine. Things like acupuncture and herbal remedies have been tested in human subjects for centuries. But check with your doctor first!

Oh, and peppermint oil for hot flashes. Just a few drops on the back of your neck – it’s a miracle drug. It cools me off within a minute or two, lasts about an hour, and when I’m over-zealous in my use it leaves me so cold I need to put on a sweater.



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Thank you, Lori, so very much for taking the time to answer these questions.

Lori can be found at her blog, Regrounding, and on Twitter.

Watch her interview on Lifetime's The Balancing Act.

October 21: Interview with METAvivor's Kelly Boyd Lange

I interviewed former METAvivor president and current Secretary/Treasurer Kelly Boyd Lange via email. The following are her replies.

When were you first diagnosed with Breast Cancer?

I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).

When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Starting Herceptin, 2007

My first recurrence was in the lumpectomy scar 5 years out. After that I had several lumps under my arm, which were removed in two surgeries. I remember going to the pre-op evaluation for one of those  axillary dissections and seeing an oncologist's note describing me as "stage IV". The label surprised me - I was rationalizing that with involvement in the breast and under the arm I was more in line with stage II or III.

Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.

How did you first learn about METAvivor?

METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!

When did you get involved working with METAvivor?

I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.

How much progress do you think has been made for metastatic breast cancer research?

Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

After 2 Herceptin treatments

It’s hard to pick just one thing! I would say the public needs to realize that MBC can happen to anyone. It happens no matter how well you take of yourself, no matter how long you have been “cancer free”, no matter how good your health care team is, no matter how young you are. It just happens to 1 in 3 of us.

What was the hardest treatment you've been through to date? The easiest?

The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!



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Thank you so much, Kelly, for taking the time for this interview.

Kelly can be found on Twitter, along with METAvivor. 

Watch her interview on Lifetime's The Balancing Act.

October 20: Obituaries, a MBC reality

In just one day shy of a month, I'll be one year out from my cancer diagnosis. I was metastatic from the start. It's been a rough journey, breaking out of the pinkwashed world and coming to terms with what Stage IV really means.

One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.

I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.

This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary.  Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.

Susanne Kraus-Dahlgren
"She's a traveler, she's a gypsy, passing through and moving on."
Born April 23, 1974 in Ft Wayne, Ind to her amazing and awesome parents, Michael and Carolyn, who survive her, she moved to TX at age 16, and then later to her final home of Lincoln, Neb, which she shared with her partner and wife of $Years, Jennifer Kraus-Dahlgren, and their furbabies, Josh, Loki, and George Bailey.
She is also survived by her grandmother, Marybelle Timbrook of OH, four aunts, two uncles, their spouses, and dozens of cousins, and five heart-sisters: Rebecca Ford of TX, Kristin Davis of NC, Caity Silke of CA, Laura Schultz of NH, and Sara Lang of TX.
She is preceded in death by three grandparents, Clifford and June Kraus of IN, and Basil Timbrook of OH, and by numerous furbabies who have happily welcomed her to her new home.
In her too-short journey on this earth, she was an actress, a writer, a knitter, a geek, a horseback rider, and a nurse. A daughter, a lover, a friend, a sister, and family to many more than the bonds of genetics define.
"If nothing we do matters, then all that matters is what we do."

I want the obit printed in three newspapers.  The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.

I want memorial donations in my name to go to any of these beneficiaries:
 http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/


This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.

If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.

October 19: Discovery

Another question from Facebook.

How was it found? - Cathy

 Not by a mammogram, I can tell you that. I first found it when I was on my way back to my car from a funeral, with my arms crossed over my chest against the cold. There was a spot on my breast that started aching, and when I put my hand over it, I thought I felt a lump. But it was hard at the moment to be sure of what I felt with the density of the tissue and the body reacting to the cold.

I couldn't find it again later, so I forgot about it. I noticed it again when my breast started itching, and I realized there was a small lump inside that felt painful and itchy. That was exactly the case when I had a cyst in my late teens, in almost the exact same location on my other breast, so I didn't think anything of it at first.

It seemed to come and go along with my hormonal cycle, sometimes disappearing altogether as far as I could tell during certain points. While I still had health coverage for a bit of time during this period, the lump was not always present. Taking into account the pain, the itching, and the come-and-go nature of the lump, it seemed far more likely that it was benign. Keep in mind too that I was several years shy of 40 at this point.

By the time it was more persistent, I no longer had medical coverage, and couldn't afford a trip to the doctor, let alone any tests they might want to run. So it remained a cyst in my mind, and I just had to wait for it do like the other one did, rupture and drain on its own. I finally found a medical provider who I could afford while I was on worker's comp due to an injured wrist, and went in to have it drained.

That's when I found out that with a detectable lump, I qualified for the state's Every Woman Matters program, even though I wasn't yet 40. I had looked over the website time and again in the past and there was nothing to indicate to me that it would cover the cost of the biopsy and follow-up if I had a lump even if I was under 40. That would have been a game-changer, for me.

I didn't have a mammogram until the age of 39, after the cancer was already diagnosed, and even then, the mammogram on my right breast was so inconclusive due to the density of the breast tissue that they had to resort to an ultrasound to verify that there were no lumps present. That same day, I had a PET scan. A follow-up biopsy to my liver a few days later confirmed what the PET scan indicated. It had already metastasized.

October 18: Conversations With Cancer

Bringing in another question from Facebook today.

I've been on a kick watching House lately, and something Wilson said in an episode really sort of struck me and made me wonder. Paraphrasing here, "Once they find out you've been diagnosed with cancer, EVERY conversation is about cancer." what about reclaiming parts of a normal life? What's been easy to go back to, what's been hard to go back to? - Laura

 I think this is one of the points that divide Stage IV from early-stage cancer. With early-stage cancer, you have a chance at moving into a point of your life where cancer is a thing of the past. For Stage IV, it's always going to be there, and there's never going to be a point in your life that's "after the cancer". That makes it harder to keep the cancer from taking over your life and becoming the focus of every waking moment.

For me, getting back into writing has been hard. I was participating in 2013's NaNoWriMo when we found out, and I was ahead of the projected word count at the time. However, once the news came in, all creative energy was zapped out by the stress. I've done a little bit of creative writing here and there, but not like I used to. My writing energy has been going toward nonfiction, these blog posts and my memoir. Cancer has taken over my writing.

I do have plenty of conversations that don't have cancer as a focus, but it's still there in my mind, an underlying note. It's like any major lifestyle change. In the early days it's a Big Thing that can be overwhelming to think about, but as time goes on, it fades into the background where it's always present but not always noticed.

I focus so much of my energy on cancer because I've found passion in Stage IV Advocacy. The more I learn, the more I realize that there aren't enough voices crying out in the wilderness, we still lack the attention we need to bring in the funding to get the necessary research. It takes energy to maintain passion though, and I don't know how much longer I'll have the energy I need to do this. So I'm focused on getting as much done as I can before I have to take a rest.

I miss my old life. Sometimes I want to go back to the days when I was busily typing away and making word count, before my world turned upside down. I'd like to be able to live a beautiful life of denial sometime, and maybe then I can go back to writing fiction. I can't escape reality right now because my best chance at surviving my reality is advocacy and raising funding for Metastatic research that might benefit me down the line.

Yes, I admit that part of my motivation is entirely selfish. I don't think anyone with metastatic disease is fighting for awareness and research funding simply for other people. If we don't live long enough to see a viable treatment come our way, so be it, and our fellow metsters who survive us might still benefit. But it would be nice to see some results from our hard work, you know? We'd all like to live. There's nothing wrong in that.

My life changed so dramatically, I went from working to not working in order to keep the health insurance I'm on, and then I went from constant treatment to once a month injections. It was difficult to get back into a normal pace for life and find the energy to do things and accomplish things and interact with people for a while. After I finished chemo, I spent well over a month doing little but binging on Hulu and staring off into space. In some ways, my cancer has helped me find a focus to get back into life again by fighting for awareness, and sparked passion in me again.

So I guess that quote holds some truth. Once you have cancer, every conversation is about cancer. It's exhausting though, and I look forward to running some of the heat off this passion so I can take a vacation from cancer.

October 16: Ways To Help

So your friend or loved one has been diagnosed with Metastatic Breast Cancer. What can you do to help?

1) Don't tell them to be brave. Chances are, they're putting on a braver face than you can imagine because they don't want to worry you. Actually, go read (or re-read) the four-part entry on what not to say (Oct 8-11, 2014)

2) Ask what you can do to help... and follow through. If they answer and it's in your abilities, you made the offer. Nothing stinks more than being offered help, and having that help disappear when specifics come up.

3) Offer to do housework. Especially if they're undergoing radiation or chemotherapy, they might want to be able to clean the kitchen or do laundry, but lack the energy.

4) Make up casseroles that freeze and reheat well. First, be sure to account for their personal tastes and any weird taste glitches that treatment has brought up. For the last few rounds of my chemotherapy, I could not stand the taste of meat, especially chicken and seafood.

5) Find out if there's any supply they're going through quickly, and pick up some extra and surprises them. I went through boxes of tissue rapidly while on chemo due to increased sinus drainage and nosebleeds. I also started going through bottles of RealLemon juice, added to my water, since I could no longer stand the taste of plain water. I also snacked on dried, sweetened ginger candy to keep the nausea at bay.

6) Offer to drive them to and from chemotherapy and radiation appointments. If they need a ride or have been driving themselves, offer to help share the burden so they can rest on the way home. Plus, the company during infusion can be nice to have.

7) If they have a caretaker, ask the caretaker what you can do to help them. Sometimes the best way to help a cancer patient is to help the people already helping them.

8) Let them talk to you about what they're feeling. If they're having a bad day, let them vent without panicking that they're giving up. Avoid giving them empty platitudes, just give them an ear to listen and a shoulder to cry on.

9) Spend time with them. If they're currently in active treatment, they might not be up for going out and doing very much. Coming over and watching a movie with them and just spending time with them can be priceless, especially with how little time we might have left.

10) Offer to accompany them to doctor appointments and take notes. It's hard to listen and remember everything that's said, especially with chemobrain being a thing. It's difficult to pay attention and take notes while interacting with the doctor, and having an impartial pair of ears listening can be a real boon.

For even more ideas, check out 44 Ways to Make the Day of Someone With Cancer by Elana Miller MD.

October 13: Metastasis is an Ugly Word

It's October 13th. Today is National Metastatic Breast Cancer Awareness Day. We get one whole day out of the entire pink month of October. One day. And that's a day people try to co-opt for bogus Facebook games that do nothing to spread awareness or raise funding for metastatic disease.

Today is the entire sum of this month's worth of blog entries, so instead of soapboxing on any issues I've covered, or will be covering in the coming days, I'm doing something special.

I'm sharing an excerpt from my memoir, Metastasis is an Ugly Word, when I first learn that the so-called cyst I thought I had was actually cancer, back in the days when I was still blinded by the pinkwashing of the disease.

*******

When I went to the Family Health Services clinic to have the cyst drained, the doctor examined it, and refused to proceed. She said it felt too solid, and if it was a cyst, it would be a more involved task to drain it than she was equipped to handle. She gave me a referral to a surgeon, which terrified me.

Not because I was worried that it might be cancer, but because I was worried about how I was going to afford that. I was thirty-nine years old, still more than six months away from qualifying for Every Woman Matters. Then she told me that wasn't true. I had an actual lump, it didn't matter how old I was. I qualified for that reason.

I was flabbergasted. I told her I'd never heard that, I'd looked into the program before, that I'd never received the impression it was accessible to me before the age of forty, lump or no lump.

"I know," she told me.

That made me angry. But what was done was done. I was there, and I would be able to see a surgeon to get a biopsy, and I would be covered under the program. No use in looking back and being angry about what might have been. Just another appointment to work into my mostly-free schedule.

I just let Karen, my Human Resources contact at work, know I'd not be coming in that day, as I was still on light duty per worker's comp because of my wrist. Most of my time at work was spent doing nothing but sitting with a certain resident who needed a one-on-one caretaker pretty much around the clock. Although I wasn't medically cleared to physically assist him if he needed to go to the bathroom, I could free up the other CNAs to work the floor and stay with him and make certain he didn't try to stand on his own.

By now, it was November 12th, and once more I'd waded through a world where everything was flooded with pink ribbons everywhere. If you didn't have Awareness about the Pink And Beatable Disease Of Women, you lived under a rock in the middle of nowhere. But I was still too young to worry about breast cancer. Besides, there was no history of it in my family to my knowledge at the time. GI tract cancers were a different story, but I had no symptoms for one of those either, and aside from an injured wrist, I was strong and healthy.

The day for my appointment came, and I went to the surgeon's office at Bryan West Hospital. When she did the biopsy, the tissue proved to be solid, not a cyst. Either the surgeon was a remarkably good actress, or she too wasn't terribly concerned about the possibility of cancer. After all, eighty percent of breast lumps are benign, especially for women in their thirties into their forties. Still, the biopsy sample was on its way to pathology, and the office would contact us once they had the results.

A week went by, and every day while sitting with the resident at work, I would pull out my phone and check the patient portal website I was given at the surgeon's office and look for results. The more I checked the site, and the longer it went by without an answer, the more anxiety I felt. It chewed on me enough that several coworkers and residents noticed my increasing agitation, and asked me what was wrong. To the residents, I simply said I was just thinking about something at home, and to my coworkers, I admitted the truth. I had a biopsy on a breast lump.

Saying it made it real, saying it brought in dark and scary feelings of panic. What if was cancer? What would I do? How could I afford it? It couldn't be cancer, we couldn't afford it, I'd die from not being able to afford the treatments, didn't that happen all the time? Why wouldn't they just post the result, why was it taking so long? I was going to load the page, and any minute now, it was going to tell me what the results were, and they would be benign and I'd laugh at myself for being so paranoid. Just another possible serious medical issue that turns out to be nothing at all.

I was already on Ativan for occasional anxiety attacks, and I took more of it now. I couldn't sleep. I was a bundle of nerves inside and working overtime to keep the nerves concealed. At night, I distracted myself with reading Watership Down for the umpteenth time, while in the back of my mind wondering if this might be the last time I'd ever get to read the book. No, that was silly. It wasn't cancer.  It was going to be fine.

I was sure there would be results posted on Friday, but there was nothing. The weekend rolled by in silence, and I was even more certain there would be something on Monday. Again, nothing. On Tuesday, a full week after the appointment, Jen called the office. My stomach twisted into horrible knots while I tried to make out what was going on just from her end of the conversation.

I couldn't stand it any longer.

"Is it cancer?" I whispered, twisting my fingers around each other.

She nodded.

My world dropped out underneath me and a cold wave of terror flushed every nerve. I started to panic and she shushed me, still trying to listen to what the doctor was saying on the other end.

November 19, 2013, I entered the New Normal.

The New Normal was a world that had cancer.

It's Cancer. Cancer. Cancer.

I was sure it was some horrible dream. I was in full-blown panic, our roommate came to see what was wrong. I was hysterical. The tests had to be wrong. No, it wasn't cancer. It was supposed to be something easily removed. It wasn't cancer. I couldn't have cancer. Cancer meant I was dying, no no no no this wasn't happening!

It wasn't that I didn't think breast cancer was easily treatable, that there wasn't a cure. As far as I knew, that was the case. But the money! Where would we get the money for the treatment that would save me? That is why I panicked. How were we going to afford this? I was going to die from a treatable disease, just like so many other Americans who couldn't afford health care. What were we going to do?

The surgeon said it was Invasive Ductal Carcinoma. It was the most common kind of breast cancer, easily treated. Easily treated. I'd be fine. Jen talked me down out of the panic attack, I was going to see an oncologist at the Southeast Nebraska Cancer Center on the 22nd, it was all still covered under Every Woman Matters, it was going to be fine.

I remembered the insurance I purchased in July of that year, and the cancer coverage, thinking of my resident who'd passed from colon cancer, thinking of my grandmother who passed from pancreatic cancer, not thinking at all of a cancer that no one in my family I was directly related to by blood had experienced. Or at least, that is what I knew at this point. I'd either never known or I had forgotten that my great-grandmother on my mother's father's side had breast cancer when she was younger.

I got on the computer and went to Facebook, looking to see if Angela, a friend of mine who does the schedules at work was online. She was. I asked if she was at the facility and when I got a confirmation that she was, I asked her to stay there. I needed to come in and it was big.

I grabbed the paperwork, planning to talk to HR about what I needed to do to get that insurance, and went to work. I didn't think about cancer, I focused on driving that mile and ran inside.

I told Angela, and the first thing she did was hug me, then grab my wrist and drag me to the office next to hers, the HR office. That's when I found out Karen herself was seven years out from a breast cancer diagnosis. I was with people who understood the panic I was desperately fighting and the relief of being understood, of being with people who had dealt with it and were okay, I broke down crying as the worst of the fear died down.

Karen said she'd come with me to the oncology appointment on Friday. Angela made certain I understood that I was not to worry about money. Declare bankruptcy if needs be, but the important thing was to focus on fighting. Not on worrying about what it was going to cost. Money wouldn't replace my life.

I had an appointment upcoming the following week to do surgery on my wrist, since it was healing too slowly for our liking. I was still on light duty, and the next few days of work were spent mostly getting told I was going to be fine, and talking with the former director of nursing, who had stage IV breast cancer. It was going to be fine.

I was going to be fine.

I could beat this thing. It was curable. It was just a bump in the road, I'd be fine, this would be cured, I would be cancer-free and back on track with the job I loved.

It was still terrifying though. But I knew that my outlook had some input on my chances for survival, regardless of the disease. People who give up in defeat do worse overall than those who keep a positive nature. I worked with that every day, I saw it in action, I knew this. So I knew I couldn't let fear and anxiety win.

I behaved in the manner I wanted to feel. I projected the kind of positive outlook I wanted to have. I acted far more confident than I felt, and I refused to allow the fear a foothold. Every time I started to panic, I would stop and recite the Litany Against Fear from Frank Herbert's Dune until I calmed down. As time went by, I found myself having to recite it less frequently.

"Make believe you're brave, and the trick will take you far." That line from the Rodgers and Hammerstein musical The King and I was true.

I could do this thing.

October 12: Don't Play Games With Me

I ranted about this last month, but here it is again. You know the games I'm talking about. The inboxer messages that implore you to forward them to all the women on your friendslist, post something obscure as their status, and somehow, all of that promotes Breast Cancer Awareness.

Breast cancer is not a rite of passage in the voyage of womanhood. It is not a status game to play. Posting obscure things or sentences of off-color humor do nothing to promote awareness of breast cancer in general, let alone metastatic breast cancer.

Taking selfies without make-up does not support people with breast cancer. Going braless is not a thing to do to show solidarity. There's been efforts to turn October 13 into braless day to show support for breast cancer.

News Flash. October 13 is already spoken for. It's the National Metastatic Breast Cancer Awareness Day. Yes, this is a real thing, that a group of women from the Metastatic Breast Cancer Network lobbied hard to get. The stage that accounts for 40,000 deaths in the USA each year gets one whole day, a sort of a backhanded acknowledgement, throughout the entire pink month.

And some people feel it's the perfect day to promote playing games.

Now, if you've played the games, don't feel guilty. What's done is done, and while you didn't spread awareness, you didn't actively harm anyone either. But the next time they come your way, don't participate. Instead, post a fact about Breast Cancer, like how 155,000 Americans are living with Metastatic Breast Cancer right now, or how only 2% of the funding raised for breast cancer goes to research for MBC.

But respect and honor our day. Forty percent of the people with breast cancer are metastatic.  Thirty were treated for earlier stage cancer, and ten percent were already metastatic at the time of diagnosis. We get 2% of the funding. We deserve more than just that, more than just that one day we have to honor the fallen. But it's what we have, allow us that much.

When the games come your way, take it as an opportunity to educate. Only then will they help spread awareness.

October 11: What Not to Say - Part 4

Welcome to the fourth and final installment of what not to say to a person with metastatic breast cancer, a series of posts spawned from a Bingo card (featured on October 8th's post). One last time, the intent is not to shame anyone who's said these things with well-meaning intentions, but to educate. Even I have been guilty of saying them about my own metastasis, due to how pervasive pinkwashing is in our society.

"When do you finish treatment?"

This is the question I think everyone with mets hates the most, because answering it forces us to look at the unvarnished truth. The answer is never... unless we're entering hospice. We will be in treatment of some sort for our cancer for the rest of our lives until we die from it. Scans, doctor appointments, pills, IV infusions, injections, blood transfusions, that's our new normal. There is no finish line to cross in this race. We will never be done with treatment. When we stop treatment, it means our time has come. So no, we hate this question. 


"What's your prognosis?"

What do you mean by that? Stage IV Breast Cancer is terminal. Our ultimate prognosis is that this disease will kill us. We can be doing fine at the moment, with stable disease and no progression, but that doesn't change the fact that there is no cure, and  treatment will continue as long as our bodies can tolerate it. Right now, at this very moment I'm writing this, if someone were to ask my oncologist how I'm doing, his reply would be "Great!" I've had a wonderful response to chemotherapy and anti-hormonal medication, and we hope that I'll continue to have this great response for a long time to come. But the fact remains that three years is still the average life span of someone diagnosed with metastatic breast cancer. That's my prognosis.


"So-and-so had this and she's fine."

Well, good for her. It's not unheard of for women with metastatic breast cancer to live five, ten, fifteen, even twenty years past the date of diagnosis. But each case is unique. Each cancer is different. There can be two people diagnosed with the same kind of cancer in the same stage on the same day, and one can thrive while the other passes away. There are so many variable factors that each case is unique to each patient. Looking at other people's progress or lack thereof does not tell you anything about your own prognosis. You can look at averages, but there's no way to know where at on the scale you'll fall. Some women thrive for years, and others are taken from us far too soon. We're not a cookie-cut carbon copy of each other. We all respond to the disease and treatment differently

And please, don't mention that so-and-so had this and she died. We know people die, we don't like to be reminded of it.

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And that concludes the four-part presentation of what not to say to someone with metastatic breast cancer. I hope I haven't offended and I do hope I have educated. As always, if you wish to err on the side of caution, consider how you would feel in the other person's shoes if you were asked such a question. Unless you know questions are invited, people have a right to keep their medical health private.

Part One
Part Two
Part Three

October 10: What Not to Say - Part 3

Welcome to day three of What Not to Say to a person with Metastatic Breast Cancer. As I've said, this is not to guilt anyone who's said these things with good intentions, but to educate. Even I was saying them to myself back when I still had the pink blinders on.

"Why can't they just do surgery?"

It seems to boggle people when they find out I've not had a mastectomy and am not planning to do so. Wouldn't cutting the cancer out get rid of the cancer? Not in the case of Stage IV. The cancer is already spreading through the circulatory and lymphatic systems, and just because it doesn't show up anywhere else only means that it's not big enough there yet to detect. Cutting out bits and parts of the body as the cancer rears its head wouldn't actually accomplish anything in curing the cancer or getting it under control, but instead put the body through unnecessary additional strain and raise the risks of infection or organ failure. There are studies that indicate removing the primary mass can actually help trigger the growth of additional metastasis, and overall does nothing to improve the chances of survival.


"How can it be breast cancer if it's in your liver/lungs/bone/brain/etc?"

This is what Stage IV is. The breast cancer cells break away from the main tumor and are dispersed through the body, looking for somewhere else to take root. The four most common sites for breast cancer metastasis are the brain, the bones, the lungs, and the liver. It is not limited to those four places, but those are by far the most common, and it's likewise not unusual to have metastasis in more than one location. Prognosis can depend on where the cancer takes root; bone metastasis is thought to be the easiest to bring to a stable state for a longer stretch of time, but it comes with it the side effect of weakened bones and an increased risk for fractures and joint replacement surgeries.

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Part One
Part Two
Part Four

October 8: Things Not to Say - Part 1

Someone on a Metastatic Breast Cancer support group on Facebook created a game for Metsters. A Bingo card, with comments that often are spoken by well-meaning, if ignorant people. Over the next few days, I'm going to be tackling some of those comments, and I'm going to be blunt about it. But I also want to say that once upon a time, I thought this way too. This is the problem of pinkwashing, it creates a false reality around cancer and shields us from the harsh facts about Metastasis. So when we are confronted with it, all we have is a false reality to draw on for something to say. This isn't to shame, but rather to educate. I apologise in advance if some of my frustration becomes evident.


"You are so brave."

Uh, thanks, but not really. I'm facing this scary thing because I have no choice but to do so if I want to keep living. I'm not brave, I'm just trying to survive and live my life. I'm not in this situation because of any choice I made. I'm just doing what you're doing, trying to live. Telling Knots compared living with MBC to being on standby for a flight. While it's true we all have to go sometime, that's comparable to everyone having to board the plane sooner or later. The difference is, people with MBC are in the airport, with tickets in hand, on standby for when a seat opens up. We don't want to be called, we don't want that seat to open up, but we're ready for it. That's not bravery.


"You look great!"

Please. I'm in a wrinkled T-shirt and faded jeans, without a stitch of make-up on and I'm bald. I don't even have eyelashes and eyebrows. I look like hell, and I know it. Telling me I look great? I can hear the unspoken words. "For a cancer patient". After all, I'm up and around and going on with life, rather than wasting away hooked up to tubes and wires. I don't look great though. I look worn out and washed out and as tired as I feel. Instead of a false compliment when we're worn down to the bone by the cancer, why not simply tell us how good it is to see us? Isn't that what you really mean?


"Stay Strong!"

As opposed to what? Giving up? I guess there's some merit to that, but do you know how exhausting it is to stay strong all the time? We have to, though. This is why it's so important that people with metastatic disease have their own unique safe space with others facing the same problem in which they can vent. We can hardly tell our family and friends how tired we are of fighting this, how sick the side effects are making us feel, how scared we are. We have to stay strong and put on a brave face to keep the people around us from falling apart, or worse yet, walking away. Almost every day I see a post from a fellow metster whose spouse has left them, whose children won't talk to them, whose friends are becoming absent. Stage IV is a slow death, and if we're lucky, we get a long time where we're not actually dying. But the fear is still there. We are hushed at breast cancer support groups because hearing our stories scare the earlier-stage survivors. No one wants to talk about metastatic breast cancer. So of course we have to stay strong. Society doesn't give us a choice.


"You'll be fine."

I fully admit to being guilty of this one. I said it about myself. In fact, when I'd be telling people I had Stage IV Breast Cancer, that's what I'd tell them, "But don't worry, I'll be just fine." I was blinded by pink, and didn't fully grasp the scope and depth of my metastatic diagnosis. I'm doing fine, but I'm not fine. I have a terminal stage of cancer. It's currently stable, meaning it's not currently killing me, but that doesn't change the fact it's never going to go away. I will never be exactly "fine", because when we say "You'll be fine", we really mean "You'll be cured". And that's not going to be the case.

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Part Two
Part Three
Part Four