Saturday, July 25, 2015

Getting shit done from the couch...

Yep, this is where I live a lot of the time. I think the fatigue from the brain radiation is really setting in. I set goals for the day: go to yoga, walk dogs, laundry or dishes. Rarely get them all done but mostly I am a tiny bit useful! Blogging has not been one of these items checked off lately, mostly because nothing much is happening.  

Essentially, I deal with the pills I have to take, the food I'm picky about but have to eat every couple of hours at least to keep my stomach in check, and the daily goals (see above). 

I heard a story on NPR one day, though unfortunately I did not catch the name of the interviewee. It really struck me though. They were discussing Scott Walker's platform of dealing with the "biggest threat to America," that being "radical Islamic terrorism." The interviewee pointed out that in American lives lost the our biggest threats are actually heart disease, cancer, suicide, car accidents, gun violence. The group MET UP, founded by two young women in my advocacy training in April, is organizing a die-in in DC at the Capitol on October 13th, to demand that more federal funds go to metastatic breast cancer research. Worldwide 1430 people (over half a million per year) die of it every day and that is how many people will lie down and "die" at the Capitol.  Imagine if our federal legislators and administrations took this and the other listed threats to America as seriously as radical Islamic terrorism and put as much federal money into alleviating them.  Like how about giving research money to the brilliant scientists trying to cure and create less toxic treatments for metastatic breast cancer? Just saying. 

So, I wrote to Bernie Sanders and Hillary Clinton encouraging them to put this threat and commitment to funding on the front burners of their respective campaigns. I did not attempt to contact any of the ever-bulging clown car full of Republican candidates. What would Donald say to this? What happens to these emails, of which there must be millions coming in to these inboxes, I have no idea but this is the only option for communicating and I can only hope some clever staffer sees it and has a lightbulb go off. I also wrote my own Oregon legislators to ask them to meet with the die-in organizers in October. All of these communications contain what is now my automatic go-to stats on metastastic breast cancer. 

155,000: number of people estimated to be living with MBC in the U.S.
40,000: number of people dying of metastatic breast cancer annually in the U.S. since the seventies.
110: number of people in the U.S. dying daily of MBC.
20-30%: percentage of people whose early stage breast cancer metastatizes.
2-4%: percentage of breast cancer research funding actually addressing MBC.
Over 500,000: number of people worldwide that die of MBC annually.
1430: number of people dying of MBC every day worldwide.
36 months: still the average lifespan post-diagnosis with MBC.

I also make family travel arrangements from the couch, do the family banking (to be honest I do sit at the desk nearby to do this one), and consult with my dogs about what jobs we can help with from the couch. Luckily, I have a really nice couch.

Saturday, July 11, 2015

15 Random Facts

A fellow blogger, Nancy, suggested this activity.  It is nice to remember that we really are more than our cancer.

1.  My first child came 20 days after her due date and took three days of labor to finally join us.  To this day, she is a little wary of new situations.

2.  I have completed one marathon, two Olympic distance triathlons, several sprint triathlons, two half marathons, and many 5k and 10k races.  I also swam across the Columbia River in Hood River, OR where the river is one mile wide.

3.  I spent five years of my twenties deckhanding, dishwashing, and mostly being the cook on large sailboats.  I crossed the Atlantic twice, circumnavigated Newfoundland, and enjoyed a lot of time in the Caribbean as well.

4.  I am Jewish and until my generation, no one in my family had ever intermarried.  Both of my brothers, my cousin, and I married non-Jews.

5.  I owned a small, independent bookstore for thirteen years!  It was the best job ever, until it just wasn't any more.  It was not internet shopping that killed it for me.  I noticed the bad downturn when the Kindle came around.

6.  I spent seven years serving as an elected school board member.  Though it's hard to use the word "like" to describe how I felt about doing it, I was incredibly glad to be able to do it.

7.  I still LOVE Bruce Springsteen, and have since I was twelve years old.

8.  My favorite food might be good old fashioned layer cake, and I make it really well.  Fortunately so does my daughter.

9.  I LOVE practicing yoga. Period.

10.  My grandfather was an immigrant who had a small grocery and butcher shop, the kind of store we wish was still around.

11.  My husband and I met in college, but I was not enough of a grown-up at the time to appreciate a really good guy.  Fortunately, we reconnected about eight years after college and have been married over twenty years.

12.  I never got to meet my father-in-law, as he died the year before I started seeing his son.  This is a true regret in my life.

13.  My dogs are named for people in books.  Mia is named for Princess Mia of "The Princess Diaries," a favorite of my daughter's when she was young.  (These books are hilarious and wonderful, just so you know, not princess-y.). Louis is named for the very real Louis Zamperini, the hero of the amazing book "Unbroken."  You should read it.

14.  Our house contains one extrovert and three introverts.  My husband is the extrovert.

15.  I don't usually like these list-y things, but this one spoke to me.

Friday, July 10, 2015

Really? Please.

The sexualization of a horrible disease.  I’m not nearly the first person to address this and I sure won’t be the last, so please ding me for unoriginality. That’s OK.  On top of making light of breast cancer, the marketing forces behind “awareness” campaigns do another bizarre crime, and that’s infantilizing at the same time.  First association with the color pink?  Baby girls, and breast cancer.  Calling breasts boobies and tatas in the name of “raising awareness”? Please.  

On a lark (and because I’m too tired to leave the couch and do laundry or cook something) I googled testicular cancer.  Nowhere did I find a baby blue awareness campaign.  I found information. Period.  Signs, symptoms, risk factors, and how-to-do-self-exams, with absolutely, positively nothing cute, cheery, dismissive, or sexual, even when discussion turns to palpating the testicles! No "squeeze the sac!" or "knead the nuts!" or "balls are beautiful!" Can you imagine?  Testicular cancer, like all cancers, is serious. Regarding gynecologic cancers, when I googled gynecologic cancer awareness month I found, again, information.  There is a Foundation for Women’s Cancer that does promote awareness and raise funds with a bracelet and September is the month for awareness events, which have included a race.  Mostly the site had links to research, support, and information.  No mention of “protect the pussy!” or “save the baby holder!” or any other such nonsense I could sit here and brainstorm.

And yet, somehow breast cancer marketing (why is there marketing around cancer anyway, a dreaded and miserable disease?) has created a money-making machine selling stuff and feel-good events over reality and the research funding to actually search for a cure.  The latest in the constant spate of such “campaigns” is the Young Survival Coalition’s partnership with Spencer’s (a department store, I think?) to “promote” “awareness” and “raise funds for those we serve.”  Just wow.  Here is a response from Beth, who was in my advocacy training group and can say anything better than just about anyone. 

So why did this happen with breast cancer, a scourge and killer of women and men, at the world-wide annual rate of half a million or so?  Breast cancer is not “an easy cancer,” it is brutal.  My own experience has been one of loss after loss after loss.  Loss of confidence in my body.  Loss of cognitive function, loss of activities I loved, loss of the ability to work, loss of most of any sense of who I am anymore aside from a cancer patient, and yes, loss of my breasts, which involved a lot more pain and loss of mobility than anyone ever really tells you.  I could go on.  And, most importantly, loss of my life, which will happen much younger than I had hoped.  I know many others facing all of these losses and more.  While I hope I’ll be around to see my daughter graduate college, I know women hoping to see theirs start kindergarten.  These are not the milestones for which we planned and hoped. 

According to the World Health Organization about half a million people die annually of metastatic breast cancer.  In the U.S. the number has hovered in the 40,000 range for the last twenty years.  That is 108-110 people every single day. Though survival rates are climbing so is the number of diagnoses. The number of deaths has just stayed the same.  40,000 is the approximate number of deaths at the height of the AIDS crisis in the U.S. We’ve learned a lot from ACTUP about what it takes to change policies, at all levels of government and the private sector, on scientific research funding.  It just kills me though, that this job is in our hands to do.  We are struggling through treatments and their not-so-pink side effects and cancer and all that goes with it.  And yet, a bunch of metastatic patients/activists will be in Washington, DC on October 13 (Metastatic Breast Cancer Awareness Day), dying in at the Capitol to demand funding go to actual research for an actual cure.  All over the country there will be smaller die-ins in smaller communites in support of the intrepid DC crew and in the hope of transforming the whole awareness paradigm community by community.  Here in Astoria feel free to support our die-in with your presence, support, social media shares, and donations to a group like Metavivor that actually awards 100% of its money to metastatic breast cancer research grants. 

The utter nonsense that is pastel colors and ribbons and tatas and boobies and “you’ll get a great boob job out of it” and huge-augmented-breasts-on-the internet-holding-soda-cans-between-them-in-the-name-of…-awareness? Has Just Got To Stop. Really.  Can we just be done with it all and get serious and actually, really work for a cure?