When I discovered a painful lump in my breast, I was told, "Oh, that's the good kind!  Breast cancer isn't painful."

When I was diagnosed with breast cancer, I was told, "Oh, that's the good kind of cancer to get!  There's so much research out there for breast cancer so you don't have anything to worry about."

When I was diagnosed with bone mets, I was told, "Oh, that's the good kind of mets to get!  Bone mets don't kill you."

There is nothing good about having a lump.  There's nothing good about  having breast cancer.  There's nothing good about having bone mets.  They're all awful.

1.  There is no correlation between a painful or painless lump and breast cancer.  While it is true that most breast cancers present without pain, it's also true that about 15% of patients do present with pain ... roughly 35,000 patients in the US alone each year.  Please do not dismiss those women and their pain by quoting a myth.  Any breast lump should be investigated within a reasonable time period, based on a woman's menstrual cycle or based on what is normal for the person with the lump.

2.  There is no kind of good cancer.  Yes, there's been a lot of research put into breast cancer, but the same number of women (and men) are dying each year as they were decades ago.  There has been little change in that statistic ... and there is nothing good about that statistic.  We lose about 40,000 each year in the US alone ... and that is unacceptable.  We also have absolutely no way to know who is going to have recurrence in the future or not ... so we ask patients to gamble and to hope and to hold their breaths because there's nothing else that can be done at this point in time.

3.  Bone mets.  Ah.  No, direct bone mets won't kill you, but they can make your life absolutely miserable.  My legs are weakening and I have had to start looking at walker/wheelchair combo devices.  I'm in more pain more frequently.  Bone mets can also make it more likely to get bone marrow metastases.  Your bone marrow is responsible for blood and platelet production.  Having low hemoglobin, low hematocrit and low platelets can make it challenging for one to breathe and makes the heart work harder to circulate the poorer blood throughout your body.  

So I'm one of the lucky ones.  I got the "good kind" of breast lump ... a painful one ... that resulted in the "good kind" of cancer ... breast cancer ... which  metastasized first to the "good kind" of mets ... bone mets ... which has now infiltrated my bone marrow.

Tell me again, when am I supposed to start having a good time?

I'm posting this the morning I am getting my first power port inserted.  Yes, after four years of living with cancer, I've not had a port.  Because I had my primary chemo prior to surgery, both arms could be used and since that time, I've been on oral treatments only.  

Until now.  I am now on IV chemotherapy and all treatments after this will be either solo IV drugs or drug combinations with oral treatments.  It is extremely unlikely that I will ever be only on an oral regime alone.

It's a scary place to be.  I have to remember that plenty of women have been on IV chemos for long periods of stability and/or regression.  I hope I'm one of them.

In the meantime, I won't say that anything about this disease is good.  I will say that my life is good because I'm still here.  In the big picture, I can say, "It's all good," but I will never say that the close-up view of having cancer is good. 

I hope that makes sense.

See you post-op.

It's another Monday in the life of a metastatic breast cancer patient and like any other population group, we all have different experiences.  There's no "one blanket to cover them all" with the exception of our diagnoses.

My MetsMonday is filled with shortness of breath, similar to what put me into the emergency room eighteen days ago.  At the time, it was suspected it was a result of the treatment I was on.  However, it's now suspected to be because of cancer infiltrating my bone marrow, thus compromising blood cell production. 

My MetsMonday is also filled with an infected toe resulting from last week's ingrown toenail procedure.  My body has to work harder to do normal things like recover from simple things like this.  I'm now on antibiotics as well.

My MetsMonday is filled with my sitting with an elevated foot, writing out Christmas cards and waiting for blood results and doctor's phone calls.  I'll go to my metastatic breast cancer support group tonight where I'll have to deal with the politics of an organization who believes they know what's best for the members of the support group in spite of the fact that they've never attended the group.  (That post, "The Blind Leading the Sick" will probably be written after tonight's meeting.)

There's nothing glamorous or inspiring about my MetsMonday.  Who wants to hear that metastatic breast cancer messes with your toes or makes you catch your breath as you walk down a hallway to go to the bathroom?  Oh, no, it seems society as a whole simply wants to hear about the inspiring bald heads and those who can embrace the traits of being human to overcome the challenges of breast cancer.

Tell that to my struggling bone marrow as it tries to make the blood I need to live.  Tell that to my struggling heart as it tries to pump that blood throughout my body.  Tell that to my struggling toe as it tries to heal from a toenail that was growing abnormally.  Tell that to the rest of my body as it struggles against the over 50 tumors I have all over the place. 

Tell that to my metastatic friends, both personal and cyber, who are having surgeries, entering hospice, living a hospice life or struggling with other side effects of treatments, trying to make it through Christmas without pain.  Tell that to those who are currently NED (no evidence of disease), but who live each day wondering when the next progression will occur.  Tell that to the families of those who died last week or to the families who are marking the anniversaries of the loss of loved ones.

There is no amount of human resilience that will overcome all this, unless that resilience is credited to the scientists and researchers struggling to get the upper hand against disease. 

Yeah, it's just another manic MetsMonday.

Sigh.  The American Cancer Society released a new advertising campaign last month entitled, "Advantage Humans:  The power of humanity is our greatest weapon against cancer." 

November 4's press release states:  "Today, the American Cancer Society unveiled a new public awareness campaign, Advantage Humans™, that puts people – and the collective power of our humanity – at the center of a shift to redefine victory over cancer. The aim of the campaign is to channel the range of raw emotions and unique human traits we all share to triumph over cancer every single day."Our new campaign, Advantage Humans, marks a turning point in the fundamental way we talk about cancer," said Gary Reedy, CEO, American Cancer Society. "We're seeing greater advancements in treatments and so much personal success in all the patients, survivors and family members we support, but we know the upper hand against cancer comes down to all of us. As the largest voluntary health organization, we hope that people will help us change the conversation about a disease that is often difficult to express openly and honestly."

"The campaign breaks down barriers in the way the Society talks about cancer. At the center of the initiative is an integrated brand and donation-driving program that profiles a variety of human traits and emotions in a range of inspiring true and portrayed stories of cancer patients, survivors and loved ones."

Do they live in the same cancer world I live in?  I ONLY hear these "positive" stories in how to deal with cancer.  I seldom hear people talk about the reality of the struggle of life with cancer.  Too many times, those without cancer are telling those with cancer how they should feel.  (That's a whole different blog post that's coming ... how the blind are leading the sick.)

I'm all for being positive ... and courageous ... and defiant ... and devoted.  However, I'm also all for being realistic.  Not one of those emotions is going to stop the disease that is slowly, but surely, taking over my body. 

The American Cancer Society has been sucked into the positive thinking mantra that makes it seem that if only you channeled your emotions into fighting your disease, then you won't die from said disease.

Seriously?  I am shocked and stunned that this is a "thing" in cancer land.

I wrote the ACS:

While appreciative of the work the ACS does, I am vastly disappointed in the messages being sent via the latest advertising campaigns.  I'm specifically referring to the Advantage Humans campaign in which you state:

"Cancer will never have what humanity has -- hope, courage, defiance, and devotion.  It's these uniquely human traits that give us the advantage and why today more of us are surviving cancer than dying from it."

While all of these traits are helpful in getting through treatments, not one of them has ever been proven to be effective in extending one's life or improving survival statistics.  The implicit message here is that if you are not filled with hope, courage, defiance and devotion, well, it's your own fault if you die.

As someone with metastatic breast cancer, I'm well aware that this disease will kill me before an expected life span.  I'm a naturally optimistic person, but that doesn't stop the progression of cancer that is replacing bone marrow and taking over liver function.  There's absolutely NOTHING about my human emotions, be they positive or negative, that can change that.

More people are surviving as a result of effective and innovative treatments.  The hope, courage, defiance and devotion come from the research end ... not the patient end ... and that is what should be used to tug at people's hearts and wallets.

I'm dying, but I'm no hero.  My doctors are the heroes as we struggle to find ways in order for me to see my daughter graduate from high school in 2018 and to see my son graduate from high school in 2020.  It's not looking likely, but if it happens, it won't be because of anything I do.  It will be because of the incredible hard work of those involved in getting around this disease and stopping it in its tracks.

Bald heads are not the picture of cancer treatments.  White coats are.

Be a part of the necessary change needed in public understanding of this disease.  Rather than promoting the ever-nauseating, "It's all in your attitude," why not feature people who had that same amazing attitude but DIED.  Their attitude couldn't save them, nor did attitude save those featured in your stories.

Free people to be who they want to be.  Stop perpetuating the warrior myth.

Make it real.

That's the true human story.

I'll let you know if I hear back from them.  I'm very doubtful they will even acknowledge my existence.  After all, I don't fit their "Advantage Humans" model.

I'm not sure what conversation they are trying to change as this campaign makes them appear to be completely out of touch with the conversation as it currently exists.

The real change would be to force people to understand that there are far too many cancers without a cure.  We CANNOT sit back and say, "Yay for us!  More people are surviving!"  We MUST insist that change happen for all, especially those with metastatic disease of any kind.  Until we stop metastatic disease, we've won no victories.

Have you ever gone to a memorial service or funeral and thought, "But she was doing so well?"

That's the beast of metastatic breast cancer. We're told over and over that we don't look sick and we hear questions like, "I don't see how you can be so sick and yet have so much energy!"

If we are on treatments that don't cause hair loss, people assume, "Oh, it's not that serious. She'll be okay."

If we have a crisis and bounce back, then people continue with those assumptions. "Oh, that was just a minor cold. She's okay."

If we start a new, harsher regime and deal with side effects, we're told, "Oh, don't worry! This will be the one that kicks cancer's ass to the curb!"

We're told to never give up hope ... that we can beat this.

But no, we can't.

Some women are exceptional responders and reach no-evidence-of-disease (NED) early on in their metastatic diagnosis.  I love reading those stories!  I love knowing what type of mets they have and what type of treatment they received.  While I have never been NED, I hold out hope that my liver can be NED or that my bones can show healing rather than disease progression.  However, I do recognize, it's more a matter of "luck" (I don't really like that word, but I don't know what other word to use) in that some people reach NED and others don't.

Some people don't respond to treatments at all and the cancer relentlessly marches through their body.  

Julie was one of those women.  Diagnosed with early stage disease in 2009, she had a double mastectomy, had chemotherapy and took her Tamoxifen daily.  In January 2014, she discovered it was back in her liver.  She underwent almost every chemo known to the breast cancer world and the cancer in her liver would wax and wane accordingly, but never completely went away.

And it kept spreading elsewhere.  Bits in bones, bits in lungs, build up of pleural effusion.

Julie kept it real.  She admitted when she was exhausted and she cursed when she was mad.  And she was mad ... a lot!  The mom of six children ranging from teens to adulthood and the proud mom of a much loved grandson, Julie was furious that this disease was back.

In spite of her occasional "keep positive" posts and the occasional "never give up" themes, Julie knew this disease would kill her.  When she found out that it had spread once again, she considered stopping all treatments, but was willing to try one more.  She was so very tired of it all, but for the sake of her family, she kept on.  She lived to love and she loved to live.  She was protective of her family and she started a secret group in order to have a safe place to privately vent.

On Friday, December 11, Julie posted that her latest scans did not have good news in that the disease had spread further in her liver and lungs, as well as moved into her skin.  Her last words to us in that group were in that post, " ... thanks love you all XOXOXOXO."

On the 15th, her husband and daughter announced that Julie's liver had failed and that it was a matter of days before she left us.  This morning, December 17, 2015, less than two years after her metastatic diagnosis, Julie died.

There's no softening the blow.  There's no platitude that will make any of us, especially those who knew Julie personally and those who connected with her in a special way, feel any better.

There's no amount of pink that can whitewash the reality ... that another young woman (early 50s) is gone due to a disease that, in spite of multitudes of walks, runs and relays, still has no cure.  She is included in the survival statistics for her early stage because she lived five years post that diagnosis ... how wrong is that?

We desperately need change in how breast cancer is tabulated.  We desperately need change in how the public perceives this disease.  I don't have any problems with living with a positive attitude (I'm a natural optimist), but we need people to definitively know:

THERE IS NO CURE FOR METASTATIC BREAST CANCER!!!!! 

Only research will change that.  Much needed research that needs greater funding without being watered down from charitable organizations who are raking in the money.

Julie didn't need another pink ribbon.  She didn't need another piece of tchotchkie declaring her to be a survivor.  She didn't need another inspirational poster on her Facebook wall telling her what a brave woman she was.  She needed a cure.

She was doing so well! 

And then she wasn't.

And then she died.

I'm so sorry Julie that we let you down.  You deserved more.  Godspeed.

In spite of having eight chemotherapy sessions at the beginning of my diagnosis, I have not spent much time in group infusion rooms.  I was originally diagnosed in Hong Kong and each of my six chemos I received there were given to me in a private room.  I never saw another patient.  I was a part of the private health system since I was not a Hong Kong resident who could benefit from the public health system.

I returned to the United States two days before my visa expired.  I had my last two chemos in San Francisco.  I do remember it being very different (and chaotic) in my eyes, but since my last infusion was August 2, 2012, I kind of put it out of my mind.

I was officially diagnosed with metastatic breast cancer on January 2, 2013, a mere four weeks after my last radiation treatment.  Due to the extent of disease found (in 23 vertebrae and a rib), my original diagnosis was revised to metastatic de novo (from the beginning).

I have gone to this infusion center almost monthly since January 2013 to receive my Xgeva shot.  It's a quick in/out procedure that happens in a corner room for people just like me ... no time and/or attention needed.  Just a shot, nothing but a shot, and slam, bam, thank you ma'am!

Last week I had to receive my very first blood transfusion.  This, unlike my shot, is an all-day affair.  It put me on edge to think of this and I was less than thrilled at the prospect.  I hung on to the encouragement I received from others ... that the transfusion would help me feel so much better.

Off I went.  I arrived at 7:30 a.m. and was eventually brought in for the cross, type and match portion of the day.  While sitting in the chair, another woman was brought in and was being set up for her chemo.  This was not her first chemo, but for some reason, she seemed completely unaware of how much time it would take for her to go through this process.

"I have to catch a plane out of Oakland at 1:00!  You can't keep me here until 12:30!  This is so wrong!  My doctor said only two hours!  Why are you doing this to me?"

Yes, she was very demanding and yes, she was yelling.  Didn't help my stress level very much.

Her infusion was supposed to take three hours, followed by an hour of observation.  The nurses asked if she could book a different flight.  Her husband replied, "No, we can't.  They're all sold out.  There are no other flights and we have no place to stay tonight."

The woman continued to yell about how the nurses didn't know as much as the doctor and they had to do her infusion in a much shorter time period.

The husband got on the phone.

They were booked on a private plane that was not definitively tied to a schedule.  My nurse and I looked at each other rather askance.  Really?  A private plane?  But she claimed to be tied to a schedule? 

By this time, my veins had been found, blood had been drawn, and I was sent off to eat some breakfast.  When I returned, the woman was not there, so I don't know what happened with her story.

As I got settled into the room, a man from southern China was told his kidney functions were compromised and it was possible he wouldn't receive chemotherapy today.  His son was translating for him.  While they were speaking in Cantonese, I talked a bit with them in Mandarin and the man in the chair lit up.  "It's not often I hear a white woman speaking one of my languages."  They ended up filling him up with IV fluids and proceeding with his treatment.

Another woman was receiving herceptin for HER2+ breast cancer. They used a vein for her infusion so I asked her why she didn't have a port since Herceptin is usually given for a year.  She told me she was diagnosed metastatic de novo TWELVE YEARS AGO! and has been receiving herceptin only as maintenance all that time (following her primary treatments).  Wow.  I asked about where her mets were and she said that it was a single superclavicle lymph node and that she has been no evidence of disease (NED) this entire time.  Her doctors here in San Francisco (she was diagnosed elsewhere and lives elsewhere) say that she was likely to be Stage IIIC at diagnosis rather than Stage IV and have told her that she can stop receiving herceptin, but she told me it was her security blanket and that she wasn't giving it up.  She's planning a move to Italy as she finally arranged to have her care transferred to a clinic there.

An elderly woman filled the herceptin woman's chair.  While she had vibrant speech, she moved slowly.  She was well known in the infusion center and a lot of nurses stopped by to say hello to her.  She had Christmas gifts for them all.  She talked of her husband being in a care home and she talked of this maintenance chemo being her last treatment option and that when that treatment failed, she was prepared to enter hospice.  She was concerned about her husband, though, and didn't know what would become of him if she died first.  A social worker came in to talk further with her.

I had brought along a lot of desk work to do while in my chair and had been writing during most of these interchanges.  I can multi-task, though, and listen, watch and write at the same time.

My phone rang.  A casual friend who has had Stage 1 breast cancer was on the line.  She's a chirpy kind of gal who believes that healthy eating and healthy living is all that's needed to stave off metastatic disease.  She doesn't follow my story, but heard about my transfusion from a mutual friend and decided to call.  Because she doesn't really know me or keep up with me, she was out of the loop that I have had disease progression over the past few months and am dealing with new treatments and side effects.

"But you're okay, right?  This transfusion is all you need, right?"

"Well, no.  I have disease progression and I'm on my eighth treatment protocol.  The seventh one failed after only four months and we don't know what this eighth one is doing.  It landed me in this chair."

"Oh."

I was still too tired to manage others' emotions and reactions to what's happening in my body.  To be honest, I end up doing a lot of that, but I was just in no way, shape or form to do so while sitting in that chair.

The woman next to me (who hadn't said a word up to that point), talked to me after I finished that call.

"Please don't take this wrongly.  I can't hear your story.  I just can't.  I don't want to know anything else about you so I'm going to draw this curtain between us closed.  You are not doing anything wrong and you are not talking too loudly (in fact, that phone call was the first time I had spoken to anyone in over an hour), but I just can't handle your experience."

She was an early stage breast cancer who was aware of the chance of recurrence.

"I understand.  Please, get some rest."

I didn't answer any more phone calls while she was in the room.

I was let go at 3:45 p.m.  I was the only person in the room at that time and my head was spinning a bit.  What a cross-section of society!

Everyone has emotions and everyone has a story.  Each story is an important one and each voice needs to be heard.  In spite of the entire range of needs expressed in that room ... from anger to desperation to fear to acceptance ... the nursing staff was nothing but kind, loving and caring.

I can't imagine doing their job.

I started the day with pale cheeks and left with some color in my face.  I'm waiting for the results of today's blood work to confirm that the jumper cables (transfusion) did its work and that I'll be able to start treatment again.  But then again, I don't want to be back in that chair any time soon.

I am feeling much better.  Life goes on.  I'm grateful for today, so I'll simply be glad in it.