Saturday, October 22, 2016

Vickie Young Wen

My friend Sandy had just died, and I was terribly sad. Sandy was one of the first women I became close to as a metster.  Sandy and I had been diagnosed around the same time, or maybe she was ahead of me, I no longer remember as she's been gone a few years.  We became online friends, very good friends, very quickly. After the first "reach out," we spent all day chatting with each other - hundreds of messages.  Day after day.  It was natural and intense.

When she died, I was very sad, and missed her a lot, and posted about it.

The first time I remember Vickie Young Wen was when she reached out to me in friendship.  She acknowledged my loss and offered to chat with me the way I had with Sandy.

I had known of Vickie already, probably had talked to her although this was the first conversation that stuck.  I liked her, but I thought, for me,  she might be a bit ... nice.  I knew about her love of God and her desire to live by religious principles and as you may know by now, I am an atheist who has no interest in changing. I may have stereotyped her as the type of Christian who feels they must convert me, and while I totally respect everybody's belief system, I also want mine respected too.

I also am up for a bit of snark in my private conversations, or was.  Sandy and I had humor that was a bit twisted by normal standards.  I thought Vickie might be too serious.

I believe, as honest as I am, I even shared those sentiments with her.

Looking back, of course,  I think the truth is I wasn't ready for another friendship revolving around metastatic cancer as I was still grieving Sandy.  After all, Sandy and I didn't have gossipy or negative conversations, just a bit of gallows humor.  We only talked about our lives living with this disease  - and Sandy was also religious, in the Jewish faith, one I guess I'm more comfortable with.  (Psychologically, I know why - my Christian mom made me go to church against my will - a non-believer from the start -  and my Jewish father never mentioned religion).

Vickie did not take my veiled "I'm not ready" as a rejection.  She seemed to understand.  She had read my blog and had a sense of who I was.   She started chatting with me online, just chit-chat, about pink, etc.  I responded because I usually do, and it was at a time when I spent most of my time in front of a computer.  Conversations got deeper, and then, she made overtures to meet in person.  She was once in Sacramento and wanted to meet, but it was a time I had something else going on.  And, it wasn't an important thing; to my everlasting regret, I could have cancelled whatever it was.  I just didn't feel like meeting anybody.  But I'd given her my address and when I came home, I found a little package from her on my doorstep, an item I have kept.

She kept communicating, I kept responding.  We sent some cards and things to each other and I started to consider her a friend, practically against my will.

She came to my city again and this time we met.  We spent a sunny day having coffee and cake at a bakery and doing a bit of shopping afterwards.  She was funny, we had a lot to say to each other and were able to share exactly what living with this disease is.  We talked about our families (both of us are full of love for them) and shared our mets stories, all those details you can't share online.  We just talked.

Vickie and I meeting
Now that I considered her a good friend, we began talking online more frequently, and she and I both were on the same page about pink, of course.  She began writing about it more intensely and sometimes asked me to proofread things before she posted them.  She was such a good writer, she didn't need help.

I wanted to do some public online video chats with her and another woman and Vickie was into with the idea, saying she would make the 2 hour drive to come to my house to start right away.  It never happened... but it's because of me.  I had excuses: my house wasn't clean enough and what if she lived in a really nice one and would look down on me for mine or what if the dog jumped on her and hurt her and mainly, I was too tired.... I was always so tired.  She had more passion for education than I do, that is clear.  But to my credit, a big consideration in saying "not yet"  was that I didn't want her, with her diseased bones,  to sit in the car for two hours to get here, when I hadn't thought out what exactly would happen yet.  I did worry about her ignoring her disease and going too fast.

Vickie had a ton of energy.  She was diagnosed with bone mets after my liver mets diagnosis, in 2012, I think, but despite her having more disease,  I was always the sick one.  I was always stunned that she had no pain, when I live in pain.  How is that possible?   She had buckets of life and never seemed tired.  She was passionate about educating people about pink and mets.  In her vibrant way, she found many niches of support and friendship.  She was involved in a group of woman from Australia who gave her a lot of comfort.  She talked about them often.

She came up with the tag that I now see a lot of women using #Iwantmorethanapinkribbon.  She named her blog that.  I thought it was too long and would never be a hashtag people used.  I was wrong, she was right.

I was on the panel of a group of health advocates from different disease areas sponsored by a pharmaceutical company, and I was asked to invite breast cancer patients in social media to their first ever conference.  The first person I thought of was Vickie.  She had just started her blog (although her CaringBridge had been around a while) but I knew that she would grow it quickly and had a lot to say and I thought this conference might help her say it effectively.  Thankfully, she agreed to go and we met again, this time in New Jersey.  We spent most of the time together.  She took advantage of being back east and after the conference, took her son on a trip to New York, so I got to say hello to him.

Healthevoices 2015, Vickie on the left
Her children are both still in high school.  She was intensely and incredibly proud of them and her husband Art as well.  She spoke highly of so many people, I couldn't list them all.  She had a PCP physician as a friend, and researchers, educators, and many metastatic patients. Every October, she put out information for the masses. One year, she posted every day in October a myth about breast cancer and educated thousands with her 31 posts.

When was the last time I saw her? It couldn't have been only twice, could it?  She was such a presence in my life that I can't believe it. My memory is shot and my old phone is dead, with all photos. Only these two exist.  So I don't know, but what I do know is whoever invented the term "force of nature" must have met Vickie.

I guess I didn't need to see her to believe she was around. She was always in my thoughts.  She, of course, did not replace Sandy. I've learned that it's not about replacing people.  Each has their own space in our hearts, and that space is infinite.  She just became another close metster friend, one who I could share the hardships of this disease with.

Then ... I took her for granted.

No, not her.

Her health.

At some point, I needed a break from mets.  I was feeling really good and just wasn't into being online and hearing about cancer.  I stayed in minimal touch with my group, and I touched in with her, but not frequently, I could go a couple weeks without talking.   She told me she wasn't doing well, that cancer had entered her brain. She had infections in her eye, and episodes of pain.   I told her she'd survive it.  I knew many who had, and Vickie?  Vickie was the healthy one, she wasn't going to die before me. She was certainly going to see her kids graduate from high school, as I had done. She was going to live ten years with mets.

That has been my plan, but it never was hers. She, practical woman, did not allow herself that denial.

Our long conversations ended, and I barely noticed because I wasn't spending time online, and then, my iPhone died all while she was getting sicker.  Because my phone crashed, and it took a month to get a new one, and I lost passwords,  I could not log in to her Caring Bridge site, although I tried.  (At the end, I made a new account so I could read it.)  Although I knew of her problems,  I also read about her latest PET scan that she said was good, that there was only a tiny area in her brain and her spinal mets were the same as they had been.  That's what I hung on to, ignoring the decline in other areas.

October 3rd, she showed me a photo of a pen she made, like the ones I've sold.  A crafter, she found the pen seller and made her own.  It was gorgeous.  Our last back and forth conversation, on October 10, was just about an acquaintance of ours (and one who I also invited to the conference and wanted to do the talks with). She had been diagnosed with mets too, lived several years on chemo and then discovered, unbelievably - astonishingly - that she had sarcoidosis and not cancer, just like a House episode.  I messaged Vickie and asked if she heard and said how wonderful and remarkable it was, and Vickie said, "I can't even imagine the burden of death being lifted from  Such good news."

It was so fitting that the last thing she said to me was how happy she was about somebody else's good news.  That, in a nutshell, is Vickie.

The sad thing for me was that we acknowledged death together.  Talked about it many times.  And when it was near, I denied it could happen to her. I didn't want to think it.  She didn't think she would die right away, of course, or she wouldn't have made her pen. But she was sick.  And, it became apparent the last two weeks,  and she was told that she was unlikely to come out when she went into the hospital. (She did get to die at home, with her family at her side).  She knew things weren't good but I didn't believe, after all our reality. She used the phrase dire.  The last thing I said - exactly one week ago - was "What is happening friend?  What is dire?"

I got no response.

She died October 20.

Another friendship gone.  Again, I am standing alone in this disease, surviving when my friends all die.

I've been five years a metster.  Seven years with this disease but five years living with the knowledge my time is short.  But I am able to pretend that isn't the case, and I make friends in my situation.  And one by one, they die. I know that it will be me, too, and each friend I lose makes me feel closer to death.

Vickie was bright, eager, incredibly intelligent.  A natural educator and a born leader. Enthusiastic, full of ideas and energy. A woman who loved her life, who loved her family and knew how important it was to be friends with people, and knew how to win them over.  She talked a lot out of sheer knowledge and hugged a lot out of love.   It is astounding to me that she is gone and I'm here.

She made me her friend, would not let me go.  Now,  I have to let her go.

My heart, my love, my wishes for peace to to her husband, her children, her mother in law and all her friends.  Know that she told me about you in the most loving way possible.  I know that there are many people all sharing their pieces of Vickie all over the internet and in homes.  Some of them may sound unlike the Vickie that others know.  That is the beauty of humanity, how we can come together and share parts of ourselves with different people, and it makes a beautiful whole.

She was such a good person, and taught those who would listen so much.  The world is surely a sadder place for her being gone.

Love you Vickie, always.

Life goes on, I have a friend from Utah visiting me.  Please forgive this hastily written eulogy and any typos,  as I don't have time to write.  I hope that my love comes through loud and clear, badly written as it is.

Saturday, October 15, 2016

My spirit animal and another kind of awareness

My son and his wife have a very special cat.  I have had many cats in my life, but this one has more personality than any feline I've ever seen or owned.  I used to suggest they video their cat and put it on YouTube - I thought that it would become famous. It would be Happy Cat, the counterpart to Grumpy Cat. They never took my advice being busy young people, but she is my special grandcat.  Animals are so important to our lives.  My own cat is sitting on my lap as I type.

Sadly, my grandcat turned into my spirit animal.  Here is why: 

This is Dax 
by Alexandria Silberman

This is Dax. Dax enjoys things. Things like cuddling, sleeping on pizza boxes, and face smooshing.

So much face smooshing.
Dax also dislikes things. Things like baths, vacuums, and vet offices.

Nasty, scary, vet offices       
This is a story about Dax, and about a dumb kid who didn't know any better.
Dax was adopted in 2006. She was abandoned in a box at a pet store that my friend worked at. Said friend took the kittens in and bottle fed them until she could find them homes. When I got her, Dax was named “Pinky” because she had an eye infection and it was swollen shut. I took her in, fixed the eye, and with a new home, came a new (super nerdy) name: Dax. I was 19 at the time, and really excited to have this fluffy ball of fluff in my life.

The excitement is hidden behind face smoosh.

Dax was really excited about keeping me up all night, sucking on blankets, and generally raising hell. But… …*sigh* You know what?

I can’t do this.

I’m not the writer Ann is. She could spin a yarn about the ups and downs of my little pain in the ass and endear her to you. Maybe it’s because I’m more wrapped up in it, but I just can’t do that. So I’m just going to come out and say it: Dax was diagnosed earlier this year with mammary gland cancer. I’m sure there’s a fancy name for it, but I honestly can’t remember what it is.

Essentially, Dax has Kitty Breast Cancer. 

I would tell you her opinion on pink, but she’s never deemed it necessary to tell me one way or another. 

We noticed two little lumps on her belly about a year ago now. She’s always gotten little lumps here and there, but they would go away after a few weeks. Since these were on her belly, we weren’t exactly able to keep a steady eye on them. She’s a fluffy little smoosh and doesn’t exactly let us do thorough physical exams whenever we feel like it. Sometime in February 2016 she wanted a belly rub, and we noticed that her random belly bump had.. doubled in size. Oh, and there were two now. 

Well… shit. 

Cue vet visit, biopsy, anxiety. 


“Hello, Alexandria… Results from Dax’s biopsy… malignant mammary gland tumor… surgery…” 

Anxiety. Dread. Face smooshes. 

"No, Dax, I’m tryi-mmph. ...hrr krrterrr.. Drrx…" *sigh.. cuddle*

Yesss… Cuddle me like one of your French girls..
Surgery. Wedding. Stress stress stress.
Dax also dislikes e-collars. And conventional sleeping spots.
Vet is pretty sure they got everything, but recommends scans in a month or so to make sure. This was in May 2016. We had just gotten married and had approximately negative monies for vet bills. So we never went back, and we hoped. And saved. And hoped.

And oh god there’s another lump.

And another lump.
And up and up and up the belly they went, all the mammary glands, all the kitty boobs. Right in a row, like tidy little tumor soldiers, lining up in a firing squad to kill my cat.

Vet. Scans. Tears. Stress. Anxiety. Waiting.

“Hi Alexandria… Results from scans… cancer has spread up mammary system… possible lymph node… right lung…”

Lung. Her lung. Little smoosh.

“Coughing, shortness of breath… A few weeks."

Happy kitty, sleepy kitty, purr.. purr.. purr.

Cough. Cough. Purr.

We took her to an Oncologist. Chemo would buy her 6 months, optimistically. She would have 2 months without treatment. $830+ for the initial visit. $430 every 3 weeks for IV chemo.

We decided against treatment. We didn’t want the rest of our little slut’s life to be discomfort, and sick, and stress.

Don’t worry, little smoosh. No more vets.

Mammary cancer is the third most common cancer in cats. If you spay your cat before her 3rd heat, you can decrease the chances of them developing it by 40-60%. Forty to Sixty percent. That’s insane.

Dax was born in 2006. Dax was spayed in 2010, when I had funds. Dax developed mammary cancer in 2015. She was nine years old when we first found a lump.

Right now, Dax is exhibiting no signs of discomfort, shortness of breath… Really, no indication that anything is out of the ordinary. She’s still our little pain in the ass slutty face smoosh. But it’s only a matter of time before her kitty boobs kill her with kitty cancer.

So in our favorite pink-themed-awareness month, be aware of a different breast cancer. Please spay and neuter your pets early on in their lives. It prevents so many diseases and issues and sadnesses. There are low-cost clinics all over the place; many shelters offer free services for low-income families. There’s no excuse to not do it, other than sheer laziness. I was a lazy dumb kid who had no idea what my delay could lead to. I don’t want you to go through this.

No one should go through this.

Save the kitty boobs, spay your kitty. ...No, that’s dumb, how do I finiSMOOSH.

"...Hi Dax." *cuddle*

Tuesday, October 11, 2016

Win an Erin Condren Planner

We all know that I have been against Pink October, but it is never going away.  So rather than just sweeping it all under the rug, this month I will highlight companies that actually want to do good for cancer patients.  Nothing is ever all bad, and as long as you know what to look for, you can navigate this month.  Remember, give to charities to provide patient support or research.  Not awareness!

Erin Condren makes beautiful planners. Somebody on her team was diagnosed with breast cancer, and heard about the charity, the Pink Lotus Foundation.  They do a lot of good for people, so Erin Condren decided that 50% of the sales of the Pink Lotus design should go to that charity.

To win, make a comment here, or under the appropriate link on my facebook page.  Please like Erin Condren's Page, by following the instructions below:

 Click here:  a Rafflecopter giveaway

Win an Erin Condrin Planner

We all know that I have been against Pink October, but it is never going away.  So rather than just sweeping it all under the rug, this month I will highlight companies that actually want to do good for cancer patients.  Nothing is ever all bad, and as long as you know what to look for, you can navigate this month.  Remember, give to charities that provide patient support or research.  Not awareness!

Erin Condrin makes beautiful planners. Somebody on her team was diagnosed with breast cancer, and heard about the charity, the Pink Lotus Foundation.  They do a lot of good for people, so Erin Condrin decided that 50% of the sales of the Pink Lotus design should go to that charity.

To win, make a comment here, or under the appropriate link on my facebook page.  Please like Erin Condrin's page, like my facebook page and subscribe to my YouTube.

Make sure to Click here:  a Rafflecopter giveaway

Sunday, October 2, 2016

A Patient's View on Awareness

I originally wrote this article for Healthline. Due to system maintenance, it is currently unavailable.  Because it should be seen during the month of October, I am reposting it on my blog, without the pretty pictures and things they added and with some minor updates.  I will let you know when it is again available on their site, as it is easier to read there. 

A Metastatic Breast Cancer Patient's View on Awareness
by Ann Silberman

To every thing there is a season, and a time to every purpose under Heaven,” goes the lyric in the song Turn, Turn, Turn, written by Pete Seeger in the 1950s. For those of us with metastatic breast cancer, that lyric takes on a deeper meaning. Not only do we live with the knowledge that our time is short and our season is waning, but we also exist within a culture that aims a pink spotlight at the wrong cause: breast cancer awareness.

Awareness, as defined by breast cancer organizations, means understanding that breast cancer exists and taking steps to get it diagnosed as early as possible. If you do those things, they contend, you will survive. But for those of us who are metastatic and whose disease is incurable - despite having had early detection - we realize that the focus on awareness is out of sync with the reality of the problem: a need for more research.

Over the past 30 years, billions of dollars have been spent on this concept of awareness. Despite these well-meaning campaigns, statistics show that the number of deaths from breast cancer has hovered around the 40,000 range for the past two decades. And there are still many gaps in our scientific knowledge of the disease itself.

At this point, everybody—from the second-grader down the street to your centurion great-grandfather—knows what breast cancer is, and that mammographic screening is the detection tool of choice. But this wasn’t always so. Back in the mid-1970s, the culture wasn’t as open. Just a few years earlier, Rob and Laura Petrie on the Dick Van Dyke Show had to sleep in twin beds so as not to offend the public’s sensibilities. Breast cancer simply wasn’t talked about. Muscle and sometimes bone were removed along with breast tissue in mastectomies, which was extremely disfiguring, and women only admitted to undergoing them in hushed whispers.

First Lady Betty Ford was diagnosed with breast cancer, and in 1974, she publicly announced that she’d had a mastectomy. Ford was applauded for being open about the disease because many women felt that they could finally confess that they too had undergone mastectomies. There was even a jump in the number of breast cancer diagnoses after the announcement. Women with lumps cast off their embarrassment and flooded doctors offices to get them checked out.

When the main breast cancer charities came along in the mid-1980s, society had already begun to change. Women had burned their bras in the name of equal rights, and sexuality— including breasts—were becoming advertising vehicles. The time was right to bring breast cancer into the public spotlight.

The Phenomenon of Cause Marketing
Why Products Are Plastered with Pink Ribbons Every October

National Breast Cancer Awareness Month (NBCAM) was started by a pharmaceutical company that had ties to tamoxifen, an anti-cancer drug still used widely today. The aim of NBCAM was to make sure every woman was aware of this disease, and to promote mammography as the most powerful weapon in the fight against breast cancer. Back in the 1980s, this seemed like a reasonable goal. Is it still today?

Every October, companies plaster products from soup to vacuum cleaners with pink banners and those ubiquitous pink ribbons under the guise of helping cancer patients. Termed “cause marketing,” a percentage of the profits from these products are promised to breast cancer awareness charities, garnering companies the tax break they desire while advertising the good they want us to believe they are doing. Even small businesses, such as bars and restaurants, get in on the hype, promoting pink drinks and donating a portion of the profits. The White House, the Empire State Building, and the uniforms of NFL athletes all turn pink—all for the cause of breast cancer awareness.

The Susan G. Komen Foundation is the charity perhaps most closely associated with breast cancer. Despite having had “for the cure” in its name for most of its existence, this organization focuses on awareness rather than research. And many charities follow suit, raking in tens of millions of dollars yearly. But is spending money on all this awareness still necessary? Breasts are now out and proud—there’s no longer embarrassment associated with having them or having them removed.

Having worked as a school employee from elementary to high school, I know firsthand that children at every grade level are aware of breast cancer. “I heart boobies” bracelets are popular, especially among the middle school set. When you ask children why they’re wearing them, the universal answer is “To support breast cancer awareness.” (The real answer is because the message is subversively trendy.) Even third to fifth graders can converse on the topic. Many have had teachers or parents with breast cancer, and they too live in a culture that turns pink every October. I’ve seen small kids collect pennies for breast cancer awareness and wear pink at Little League games, saying the word “breast” as casually as they would any other body part.

For many women, their first mammogram is as much a rite of passage as is their first period, and women often talk about at what age they got their “baseline.” Today, women aren’t afraid to go see doctors for screenings. And now, cancer is the first thing they think of upon finding a lump, not the last.

If the goal of breast cancer awareness has been achieved—and I believe it has—then that still leaves early detection. Finding cancer early enough to prevent spread would be a worthy goal if that was all there was to curing cancer. Unfortunately, there’s no evidence to suggest that it is, and there’s plenty to prove that it isn’t.

The False Safety of Early Detection
What the Unpredictability of Metastasis Means

According to the Metastatic Breast Cancer Network (MBCN), 90 to 96 percent of women who now have metastatic disease were diagnosed at an early stage. This is an important fact. It means that almost every single woman who has terminal breast cancer today can sit under the “early detection” umbrella. Most went through treatment and then discovered that their cancer had unexpectedly spread, months to decades later.  I’m one of them.

In 2009, I was diagnosed with stage 2a breast cancer with no infected nodes and no indication that my cancer had metastasized. I had a mastectomy, six rounds of chemo, and a year of Herceptin. I was believed to be on my way to a long, healthy life—until 2011, when breast cancer was found in my liver. My disease is now incurable. Contrast that to some of my friends who were diagnosed at the same time as I was. Several were stage 3c with a dire prognosis, yet they’re healthy today, and cancer-free. I was the only one who progressed to stage 4. While personal examples are merely anecdotal evidence, statistics echo this phenomenon.  Some cancers are destined to spread no matter how early they are caught, and others never will.

People are logical. We like order. But unfortunately, cancer doesn’t neatly progress from stage 1 to 2, 2 to 3, and 3 to 4. Some cancer cells take an immediate ride through the body, hiding in an organ until something sparks growth two, five—even 10 years later. Other cancers won’t ever metastasize, rendering the idea of early detection meaningless. Only research can tell when, why, or in whom metastases will happen. That is data we currently don’t have.

The Dangers of Overscreening
More Mammograms Aren’t Necessarily a Good Thing

We’ve learned much about breast cancer since the 1980s, and the idea of yearly mammography for regular screening is so deep-seated in our culture that women become enraged at the suggestion that we may be over-screening. Yet, it’s true. Study after study has highlighted the limits of breast cancer screening. A recent study, which was published in the British Medical Journal, was a 25-year analysis that concluded screening didn’t decrease the risk of dying from cancer. Still, many women have been indoctrinated for decades with the message that they must have yearly mammograms, and nothing will talk them out of it.

While nobody is suggesting that women never should get mammograms, it’s becoming increasingly clear that regular screening itself carries risks. The National Cancer Institute reports that fewer than five of 1,000 women actually have breast cancer when they’re screened. That means most abnormal mammograms are false positives, which cause a tremendous amount of anxiety, not to mention unnecessary biopsies. And mammograms are now finding a precancerous condition called ductal carcinoma in situ (DCIS), or “stage 0” cancer. DCIS is not a true cancer. It’s not invasive and can’t kill, but it must be treated like cancer because in some cases, it does become invasive. There are only subtle clues that hint at which DCIS may end up becoming dangerous, and thus no form of it can be ignored.

The American Cancer Society reports that the incidence of DCIS increased seven-fold from 1980. Many doctors believe that up to half of these DCIS cases would have disappeared in time. And up to 14 percent of women who died from other causes had DCIS according to their autopsies, and never knew it. Awareness and overscreening has led to hundreds of thousands of disfiguring surgeries for something that never may have hurt them - if only we knew more about it.

The Well-Funded Awareness Machine
The Majority of Donation Dollars Don’t Go to Finding a Cure

Clearly, finding cancer early doesn’t always save one from metastases. So it seems logical that at least a larger portion of charitable dollars should be spent on helping those with end-stage breast cancer. But independent research dollars are difficult to come by.

The Susan G. Komen Foundation (also known as Komen), by far the largest breast cancer charity, only donates 17 percent of their millions to fund research grants. And MBCN estimates that less than five percent of all charitable money goes towards research for metastases, the only form of breast cancer that kills. The rest of the money is funneled back into awareness and education. Races are sponsored, literature is distributed, breast self-exams are advertised, and of course, mammogram machines for clinics are funded. But little is spent to help save those who are dying or who are living in the late stages of the disease.

Komen is not alone. Even smaller charities, such as the Keep a Breast Foundation, don’t fund breast cancer research. Their money goes towards making plastic awareness bracelets and giving their executives large salaries, while sending the rest into “green” foundations and other initiatives that have nothing to do with the disease. Cancer research funding is mostly left to drug companies or the government.

A Call to Action
Shifting the Focus from Raising Awareness to Saving Lives

To become aware, one must understand two important facts: that the only people who die of breast cancer are the people whose cancer has spread outside the breast (when it’s contained in the breast, it can’t kill), and that one is not necessarily safe from that spread after treatment—even after a mastectomy to remove the cancer. Although the numbers here are fuzzy, the risk for relapse, according to the American Cancer Society, is one in five. What is certain is today, as was the case 20 years ago, every woman with metastatic disease will die. That’s 40,000 women every year.

Treatment options for metastatic largely remain the same as they have always been: radiation and chemo. Women with HER2+ cancer, an aggressive form of the disease, are fortunate enough to have Herceptin, Perjeta, and Kadcyla in their arsenal, new drugs that have extended lives by months to years, including mine. But for women with triple negative breast cancer (TNBC), another aggressive cancer, there’s still no magic drug. And unlike with other cancers, a metastatic spread of breast cancer—typically to the brain, lung, liver, or bones—is always fatal. Awareness hasn’t changed the most important numbers.

The breast cancer agenda shouldn’t be about finding breast cancer. It should be about saving those already afflicted with the disease: figuring out which DCIS becomes invasive, and learning about the mechanics of metastases. Just think, if all the dollars that awareness charities raised during the month of October went to labs and research doctors instead of marketing experts, the problem of breast cancer—and other cancers along with it—might well be solved.

Focusing dollars on breast cancer awareness and early detection today is as relevant as buying PalmPilots or twin beds for married couples. The true race for a cure has yet to begin. It’s time to put down the pink flags, roll up the ribbons, and focus on change.

As Pete Seeger said, it’s time to “turn, turn, turn.” We must turn away from awareness and turn towards research.

Saturday, October 1, 2016

Pink October Begins

As October begins, I want to remind everybody to use your intelligence.  Not everything that is "pink" is awful but you must use your discernment.  Don't just hand over money because something has a pink ribbon,  or somebody says it's going to a good cause. I will explain more about pink and why so many of us with cancer dislike it as the month goes by, but as a starter remember this:

If you want to help, you want your money to go to Research and/or Patient Support.

Research means: your money should go to doctors and scientists who are working on discovering how cancer metastasizes and kills, and who are coming up with methods to stop it or understand it.  There is still a lot to know about metastatic breast cancer. (Metastatic breast cancer is the only kind of breast cancer you can die from, and it means cancer has spread beyond the breast into an organ).

As an example, StandUp2Cancer concentrates on several areas of cancer, including breast.  They do research with the goal of getting breakthroughs to patients quickly.  Metavivor donates 100% of the money they take in to researchers working on the problem of metastatic cancer.

Patient Support means: your money should go to a charity that will help a patient get through the issues of treatment, whether it is paying for medical bills or somehow helping them recover in one way or another. There are many charities out there, located in every community, that do things to help cancer patients in one way or another.

As an example: I took a 3 month exercise class for cancer patients with personal trainers in a gym, all designed to help us keep our bodies going. It was free but only because of charitable contributions. There are charities that give a cancer patient a vacation, some that give free mammograms AND cover the costs of what they find after. (very important), and many other things. Those are worthy.

Watch out for the word "awareness."  Awareness is a meaningless term.  That means you are giving your money for pamphlets to be made and races to be run and heartwarming speeches to be made so that people can do it over and over, and none of it actually helps cancer patients at all.  Some awareness charities do nothing but put out pamphlets.  Some awareness charities talk a lot about finding cancer, and supposedly their organization goals focus around that.  But once a person has found cancer, these organizations don't help at all.  As we know by now, finding cancer early doesn't prevent metastases, so those charities are a waste of money. Spending money to make people "aware" that cancer exists is, frankly, ridiculous. Awareness doesn't MEAN anything.

Do not donate towards "awareness."  We are aware!

This Pink October, if somebody asks you for money and says it's for "breast cancer awareness," ask further. What is the charity?  What do they do?  What percentage goes to what they say they do?  If somebody doesn't know, don't give.

Because, they might as well say it's for "hungry kids" or "helping animals."  It's just not enough information, it's too generic.  If they can't give you the charity name, don't donate.  If the charity doesn't give to research or patient support, hang on to your money.

I will talk more about the various charities this coming month, but tomorrow, read why awareness has lead us down the wrong path.