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.

Friday, September 30, 2016

Scared of my colon

It is incredible how much of your body and life is managed by your colon.  I truly didn't know this, up until the fateful day that my colon tried to kill me.  It was Thanksgiving a few years ago that I got C-Diff which got into my bloodstream and caused a life-threatening sepsis.  Afterwards,  I had severe pseudomembranous pancolitis that took months to recover from, and it left me irreversibly scarred. Mentally scarred, for certain, but possibly physically as well.

It's the mental that gets me - I can see clear as day the handsome long-haired doctor sitting on the counter,, swinging his legs, jauntily telling me that they were going to remove all my colon - just clean it out like a whistle, he said, as if he was talking about waxing his Porsche.  After losing my breast, half my liver, my hair, and someday my life, I was also going to live it by shitting in a bag, and he was practically salivating at the idea.

I can also see the pretty blonde female surgeon, who, while I was crapping uncontrollably in the bed, c-diff fumes filling the room, looked down at me with sympathy and said not to worry, they were used to it, and trust me, they didn't want to operate because it had an 80% death rate - but it might be the only way to save my life.

I've been scared of my colon ever since.

I've been scared of hospitals ever since.  There have been several occasions that regular people would have gone to the ER - but I wouldn't.  I might be the only metastatic cancer patient who has been that ill who has not visited hospitals.   It is because of c-diff.

Last weekend is one of them.

Now, here is your warning:  this post has a lot of TMI goodies, which always come along with a cancer diagnosis, so I'm warning you now: put down your drink, finish up you lunch.  I'm a very genteel woman who hates talking about her lady-bits and the assholey things next to them, but if I want to tell this story, it's unavoidable.  So you have had your warning.

I've been rather lucky, colon-wise, all my life.  "Going to the bathroom" was nothing I had to think about, or take books with me to do, or make a big fuss over.  15 minutes after waking up: Sit, plop, done. 15 seconds, tops.

After the c-diff mess, it did take me months to recover, perhaps a full year. C-diff, if you didn't know, is a diarrheal disease, like dysentery and every bit as horrible as you have imagined it, assuming you have imagined dysentery.  It's not like when you get the flu and have the runs, it's like when you get a big cut and bleed.  You are leaking continuous foul-smelling watery shit out your ass and you can't stop it, don't know when it's coming or done.  Just as you can't control when you bleed out of a cut, you can't control this.  There is no "holding it" at least to run to the bathroom, it surprises you.  However, when you had it like I did, it never stops.  It was like somebody turned on the shit spigot and left it on.    (I lost 13 pounds of waterey shit), which wouldn't sound so bad except I was under a hundred when I went in

So, the day the diapers came off (months after I got out of the hospital) was a day to celebrate.  (Quietly). Actually, you step it down, first it's diapers, then it's maxi-pads, then it's light-days pads, then you take the leap of faith.

(Off topic:  Do you know they don't make adult diapers for somebody as small as me?  I hope I never need to know about this again but really, not everybody has an ass the size of a flotation device. And no, toddler ones do fit because the leg holes are too small. Make a small size please.  Thin discrimination!)

Despite the odds, and the longest hospital stay I've had to date, recover I did. The only thing that remained was my horrible diet.  I was told by a nutritionist to eat highly processed junk food so that my colon wouldn't have to work, exactly the opposite of what I like to eat and have eaten all my life.  I did that for a long time, and then the cancer took over again and I could barely eat anything and lost all appetite.  A piece of candy now and then was all I needed, so I never got back into healthy eating. Over past year I've been on this new chemo, I've been improving although my diet has not.  So C-Diff left me bad diet as a gift.  With all the chemo and pain meds you'd think constipation would be a problem I'd have but it hasn't been true. Healed from C-diff,  I've been regular again.

Until about three months ago.  I got constipated.  I don't know what to blame.  My pain meds have not changed.  I've been on this chemo since last October.  I still eat the same crap although a bit more of it.  I eat easy-on-the-colon and am a water nut.   No reason for having constipation.

I didn't notice at first.  After a week or so, I realized......"hmmmmm.... ain't nunthin happen down there,"  so I tried some senekot.  Now I wasn't uncomfortable or feeling bad, it was merely time that made me notice.

The senekot didn't work.   I tried it every day, and then twice a day.   Nope.  A month later, (yes, it had been a month between "tuffetts" as my mom used to call them)  I was starting to feel bloated  (and my husband pointed out that I looked pregnant) but otherwise I felt okay.  I wasn't missing it and I didn't feel like I actually needed to go. Perhaps my body had evolved into a superior being that no longer needs to defecate.

Still, at my oncology appointment, my doctor asked about my bathroom stylings as always, and I told him about my issue.   He said because of my C-Diff, he'd rather have me a bit constipated then loose, (he is also scarred by that)  and I agreed with him. So he suggested  Milk of Magnesia as easier on the colon than Metamucil.

No matter, the milk of magnesia worked.  Gave me heartburn, but worked.  In two days, I felt better.  And bonus!  Two days later, it happened again.

Now, I'm legally blind without my contacts, and so I am not wont to inspect the bowl to see what's in there.  Like you, I live on the internet, and I know that there are people who check in daily as a sign of health and there is even a chart out there that deciphers shapes and colors for you - but that is a bit much for me.

I did, however, see blood, bright red blood.

"Shit", I said to my shit.

Well, maybe it's natural after a long period of constipation, right?  So I'll keep track so I can tell my doctor if it keeps up. I figured I'd grab my glasses before I next went in there, (omg, what a pain this is going to be!!)

I'd also decided to change my eating habits and that was the day I decided to eat better.  I had a bran muffin for breakfast (instead of a donut) and a peach for lunch (instead of taffy).   Dinner I had sweet potato, a pork chop and spinach salad.

Instantly after dinner, I felt sick.  I felt like I'd eaten way, way too much and it was going to overflow if I moved. It was a horrible feeling, I do not know how obese people who eat after satiety can do it.   Full to me is not a good feeling, it is true misery.  Not only full, but nauseated, shivers, just generally feeling like that delicious meal had been a horrible idea.  So I went to sit next to my husband to watch some TV and wait to digest, stomach jostling, me feeling like I was holding back Niagra Falls.   As time passed that discomfort turned to actual pain, and I wasn't digesting anything.  Around my belly button area, I was feeling strong cramps, like somebody had tied a garrote around my waist and was pulling, and they were getting more and more powerful by the minute.  And I felt so full of food and gas I couldn't move.  Soon, the cramps got too bad and I went to bed to try to curl in a ball.  And, of course, my cat who had been ignoring me for a week decided that was the time for lovin' so she's rubbing around me trying to get me to pet her just as I'm trying not to scream in pain or puke on her..

I am fortunate to have some powerful painkillers, so even though I had finished my daily maintenance dose,  I took one, which relieved the pain enough so I could get in bed and let the cat near me and keep somewhat still.   But it started up again almost immediately.  MY husband was looking at my white face and hearing my groans and saying "Are you sure you don't want to go to the ER?"  and I said, powerfully, "Yes."

My husband should have overridden me but he never will.

Because I'm a moron, that's why I didn't go.  But I have had enough hospital experience and it's awful. I'd rather die at home then in the hospital.  I hate hospitals.   Hospitals have bright lights, there are people who accuse you of wanting drugs, people who want to stick tubes up your butt and make you put size 20 clothes on a size 0 body. They are all really pissed you are there ruining their night.  If you cry and complain you are treated with condescension and if you are stoic and quiet they treat you like nothing is wrong with you and move to the loud people. If you want your pain meds on time you are a drug seeker and if you don't, they will never come to your room.  And a lot of time, you go and they tell you it's nothing and send you home, but not before putting tubes in god-awful places or putting you in one machine or the other, and not to mention them refusing to use my port because it's in my arm rather than my chest and that's too confusing to figure out.

And besides, I hadn't shaved my legs in a couple days.

The worst my house has is a cat who wants to sleep under the covers with me. And a lot of dust bunnies.

My google searches showed I could have a blockage which is a MEDICAL EMERGENCY, or it could be a diverticulitis disease flaring up (or, cancer intruding on an organ, which is the most likely of those).  However, given the choices Dr. Google gave me, and since I know I have diverticulitis from previous scans, I picked that as my diagnosis. I decided I had that because there is nothing to do for it but stay comfortable.  The blockage requires emergency surgery and TUBES up the BUTT and down the NOSE, and I cannot have that.  I really cannot, how would I get my every six hours Afrin spray in? The second one also allows me, in fact encourages me,  to continue my candy/donut diet.  Best of all, nobody would have to remove any of my intestines or colon.

So decision made, there I lay in bed, so full I couldn't lie down, as everything would slide up the back of my throat, burps flying out, with cramps rending my body in two. I'd get up and sit on the toilet, hoping that end would have some relief but it was closed tight.   Finally, six hours after I'd eaten, I threw up, just a little, and it was full bites of what I'd had for dinner, including whole pieces of spinach. (Remind me never to become bulimic).  Nothing had digested even after all that time, and it tasted horrifying, really bulemics, stop, it's just nasty.

But, I felt better for a few minutes, as one always does after puking.  I wish I could do like those bulemics do, and really let it fly.  I bet if I could have gotten it all out, my night would have been much better.  Clearly, my body was rejecting this food and didn't want to digest it.  But throwing up for me is something I fight against tooth and nail, and so once that piece of meat and slimy spinich came out, I gulped and swallowed and stopped myself from doing more.

Of course, the pain started again.

I told my husband, "When it's morning, we are going to have to go to the ER."  Even I know you don't go to the ER with belly pain and no fever (or appendix) on a Friday night with the gunshot victims and Jack Daniels heart attacks, unless you are okay sleeping in plastic chairs in the waiting room.  (Although to be honest, metastatic cancer probably gets you in quicker, but believe it or not, I haven't tested that yet.).  I also just couldn't see a 30 minute drive over bumpy California roads.  So many reasons not to go.

Every 2 hours I took one medicine and every 2 hours I took the other, all night long.  It didn't keep me comfortable, I was a 9-10 on the stupid pain scale, and when the pills/spray kicked in I was down to maybe a 7 until it started building up again after about an hour.   But it kept me home.  And it probably saved my insurance company 50k-100k (or more) on tubes and tests and doctors and nurses and scans.  And I doubt they'd have done a better job in the hospital, as I remember never having a nurse check on me unless I asked her to.*

At 7:00, am, the pain started easing up.  It was also the day my new iPhone arrived.  (That, my friends, is the REAL reason I didn't want to go to the hospital, now you know the worst about me.  I like my toys.)  I drifted off to sleep after 7:00 and woke up at 1:00, doing better.  I decided if I could make it through a night like that, I could make it through a weekend, and if it was bad on Monday, I'd go to my doctor and he would know what to do.  I gave my colon a day off and ate nothing and set my phone up.  Tuesday, I had some soup.  Wednesday, I began to eat normally and all is well by now.

Well, it's Friday as I write and I haven't gone to the doctor.  I am not 100% well but am recovering. I have slept a lot this week.   I decided to get "regular", so I take senekot every night and usually am productive the next day.   (If what I experienced had to do with constipation, I don't want to do that again).

And I have a lot of pain (again) on the right side especially when I breathe in.   My stomach is back to feeling like it did a few months back - constantly full. I had gotten to 97 pounds, goal weight 100. We'll see if I can keep it up but I once again have no desire to eat.  I am intensely fatigued all the time, but am still recovering.  My energy gains are gone.  But I have a new iPhone 7+and I didn't go to the ER, saving my insurance thousands..

You are welcome, Anthem Blue Cross.

Each time I get slapped down, I get up.  But I admit, I get up slower each time.  How much is the fact that I'm aging and how much is cancer and all the treatment I've had?  It's hard to say isn't it?  I'll never know what it feels like to be in my 50s and healthy.  MY husband, however, is 69 and much healthier than I am.

Last September, one year ago, I had 2 weeks of incredible pain, which stopped INSIDE a scan machine! Because it stopped I thought I had kidney stones, or something else.  Unfortunately, that turned out to be mets growing, farther than it had before.  I have been on this chemo a year, and maybe it's done all it can do.  So I'll tell my doctor when it's time to see him in five weeks, and see if he'll do another scan, although I had to fight the insurance company for the last.  If they won't, then we'll see.

My insurance company is doing a  medical "review" to decide whether I can keep getting the pain drugs I was taking so cross your fingers they say yes.  Otherwise, there will be more hospitalizations, as I can't take pain like that without chemical help.  It would be stupid to say no but hey....they have said no to PET scans.  Need I say more?

This is the life of a metastatic cancer patient.  I had such a long period of feeling good, I decided to start a little business, make some money for Christmas, and then BAM.  Something like this happens. A healthy woman could recover in 24 hours.  It takes me a couple of weeks.  And it reminds me I'm never too far from it being all over.  It reminds me that starting a business is risky for me, risky for everybody, as one day I could suddenly not fulfill orders and nobody around me could finish.  It's like cancer wants me to just sit down and watch YouTube videos all day.

Well, I'm doing ok now.  This could have ended quite differently - it may still. One thing for sure, I'll let you know.


I am asking you to check back in October as I will be doing some important posts, starting tomorrow, and I also am going to have a guest post with a surprise topic.  I also will be giving away a very cool item that has a LOT of the proceeds going to a REAL charity (not 5% to a nothing charity) and despite it being pink, it is something I use and you will want. /hint

Please start your amazon purchases from my page - that would really be nice.  If you start from the search box on my page and then shop, anything you put in your cart and check out will give me a small percentage.  Unfortunately, you have to be on my full page and not mobile to see the search box - I'll figure out how to get it to view on mobile one of these days.  That money really helps around Christmas. No I am not poor but I'm not Mark Zuckerberg either.  I work hard to keep the blog going and this Amazon thing is how I get paid.  I am solidly lower middle class, paying for a kid in college, for those who haven't figured it out yet.


If I seem hard on hospitals, read this post.   I have been hospitalized after this, as had my dad.  I had some amazing nurses which I wrote about - the ones in ICU in Mercy San Juan and all the ones in UCSF and my wonderful student nurse, Dana, whom I'll never forget. I hope that she hasn't become jaded by now either as she was so loving when I was so terrified.   But there have been a lot of misses in the wards, and Clementine stands out for me, but she's not alone.  Plus, what my dad experienced with nurses when he was sick ( and died) would make a horrible, unfunny sitcom.  They actually refused to come over to an old lady who had fallen out of bed, right in a room in front of the nurses station because she yelled "help" instead of hitting the the call button (which she couldn't reach)  and I was told that flat out by the staff.  "We don't come if a patient is screaming, they have to use the button."   I would rather die than ever go to a hospital in Carson City, Nevada, although the outcome would be exactly the same from what I saw that day (and my father did die).  Anyway, hospitals are not good places under the best of conditions and I intend to stay home as much as I can.  A good nurse, and you will have one, can make your day.   But a bad one, and you may have one, will ruin your entire thought about hospitals.

Unless I'm running a fever, mere pain won't send me in.