Living Beyond Breast Cancer #beyondthebreast Campaign

It's been so long since I've posted.  I really am still alive!  Life changed when the boys went back to school.  My days, if it weren't for cancer and scanxiety for next week, are peaceful and content.  Basically, I go to yoga in the morning or practice on my own, I walk (or run!) the dogs. I clean up a little, cook some, and I work on my October projects.

Sometimes I take a break (a break from the break that's my life!) to sit on the deck and look past the rosemary to the sunflowers and beyond to the river. It is a pretty fine place to sit and do nothing.

Part of not writing here is that I've written for Living Beyond Breast Cancer - Living Beyond Breast Cancer Guest Blog by yours truly! - for the Daily Astorian (an editorial that will be published just before the start of October, and for a talk I am giving on the 8th of October about guess what?  I will load all these onto the blog after the fact for those not here.

Also, Libby and I (mostly Libby) are in full force getting ready for the October 13th Astoria Die-in for Metastatic Breast Cancer - Astoria Die-in on October 13th.  Libby is a high school senior at Astoria and has taken on the die-in as her senior project. If you're local and reading this COME, either to lie down and "die" or to support this project. Support Libby's efforts in any way you can. Make a donation that is useful (unlink) to Metavivor or the Metastatic Breast Cancer Network, who actually fund research on metastases.

So that's where I'm at. Scans of body and brain next week and doctor appointments with results on Thursday.  It's an Ativan-for-sleeping week.

My Medical Moments

I’m not here to talk about the stuff well-meaning lay people say to us cancer patients. No one knows what to say.  We’re all doing the best we can.  However, I’ve been keeping a chronology of my “medical moments,” as I like to call them, and no time like today to publish them.  Medical staff people from receptionists to the oncologists in charge of my care speak with me frequently.  They have to! But, we’re all imperfect and there are some things that just don’t need to be said to cancer patients.

A caveat:  I am getting amazing care. Shout out to my medical oncologist Dr. Robert Raish, OHSU Knight Cancer Institute.  Gotta stay on that guy’s good side… 

Another caveat: These moments, when gathered in a tidy package, seem to imply that I have extreme bad luck with stuff like this happening. Or that I have not gotten excellent care.  Neither of these is true.  My stories are NOT uncommon.  And I chose and continue to choose very well for my care.  People are rushed, and it is hard to have these types of conversations.  We are all humans, and we just don’t say the right thing sometimes.

August 2012:  at my annual exam with my CFNP I showed her a large mass in my breast.  It moved around, I’d had plenty of benign fibroids in my breast before.  The brochures tell you not to worry if you can move it around.  Cancer attaches itself!  I was getting a mammogram anyway, and she told me it did so not feel like cancer.  Takeaway: Please, please do not act certain about things you can’t be certain of until imaging and biopsy.

September 2012:  I love my surgical oncologist.  She is an amazing woman, and I know that keeping me positive was important standard of care, if you will, for the crap I was about to go through.  She told me, this is a bump in the road, a crappy year and you are going to get through it and move on.  Except that a year and a half later I felt a lump in my neck and was diagnosed with metastatic recurrence to my lungs, liver, and many lymph nodes.

Jan 2013:  The plastic surgeon…  Sold me on the straight to implant reconstruction as it was the only way I was having reconstruction.  For me, I was not about to do multiple procedures with tissue expanders, bla bla bla, and often be unable to swim or run.  I was sold on the convenience of it, truth be told.  I would not need a bra (I HATE bras), and as a person who wore a swim suit almost every day I thought it would just be mentally easier to have a little something in that section of my suit.  What he failed to tell me, was that implants can be extremely uncomfortable. That they actually feel like the worst, most too tight bra you’ve ever worn, only 24-7.  To this day, three years out from surgery, I can’t stand the things.  It would have been good to have more information.  What’s that you say?  There’s so much information out there for the finding?  In that year on that bumpy road, I was not alone in having a crap ton of really difficult decisions to make, while being dazed, confused, scared I was going to drop dead on my husband and kids, and feeling putrid 99% of the time to boot.  And those cancer decisions?  They are ALWAYS between things that are both Extremely unappealing.  Give us the real information, please.

April 2013:  The radiation oncologist informs me on what I was told and thought would be my second to last day (the 27^th day in a row) of radiation treatments an hour from my home, that actually he had planned five more targeted sessions.  He forgot to tell me!

            This is the thing about being a cancer patient, people.  EVERY interaction we have is frought with anxiety and second guessing about its true meaning.  So this little gem of a moment, at what was to be the end of my craptastic year and then done of being a cancer patient, sent me into a tailspin of doubt, of suspicion that my situation was worse than anyone was telling me, etc.  By the way, I am a well-read, fancy liberal arts education human.  I know how to process information, to ask questions, to assert myself when necessary.  Many, many of my compadres in cancer don’t have my arrogance, or confidence, or whatever.  Even so, cancer levels us all into puddles of fear a lot of the time.  Add to that cognitive difficulties as a result of chemotherapy (multiple regimens in my case) or say, whole brain radiation (had that too), and it is a gloppy stew needing constant adjustments to the burner temp, the seasoning, the balance of ingredients.  Poor communication like the above only feed the fear beast.  I know that’s not your intention in your commitment to caring for people.

Also, I had my overdue annual exam around this time.  I have been seeing my PCP for probably fifteen years or so.  And her assistant, an LPN, has been with her for her entire career in the area.  So, they know me.  We did the usual exam, nothing special about it.  As I prepared to get dressed, the LPN told me to hang on a sec, she would go and schedule my mammogram and be right back.  Huh?  I tried to be calm as I said, “that really won’t be necessary, as I have no breasts.”  Gosh, maybe just looking over my chart, even the last couple of entries, would have told you that.  I’m not a super sensitive person who’s easily made to cry.  If I were, and many people are with plenty of good reason, I would have right then.  Let’s be real, losing your breasts is not an opportunity for a boob job.  It is not a small thing, though breasts are not major life sustaining organs.  It actually really sucks, for a lot of reasons, but I digress. 

May 2014:  As I said earlier, I felt a lump in my neck out of the blue one night, called Dr. Raish’s office blubbering, and was asked when I could get there.  I said two hours and got in the car (yes, I live two hours from my beloved oncologist).  We set up an ultrasound guided biopsy and I set about asking Dr. Google what else it could be.  I was giddy with my own intelligence at that point – it was either an infected implant (praise be, I would have to have them out!), or an obscure autoimmune condition I found that seemed to fit the bill.  Smugly, I went to my follow up for the biopsy results only to be…. Er…. Wrong.  After scanning the other remaining pieces of my body, it was found all over the place. 

Fall of 2014:  This season was chock full of medical moments with insurance authorizers, schedulers, and the like.  The upshot is that if you are one of the above, please know that “scanxiety” is real.  It is not just a cute tag line that we live scan to scan.  We do. So please, please, take the long road, do the harder, more complicated finagling of authorization gymnastics and scan scheduling.  The easy, efficient way probably does not serve the patient best.  Communicate with the different facilities involved, and if your giant medical facility has the front desk people and the techs in the back on different EHRs, fix that right now.

Spring 2015:  I was just settling in to my life as it was.  The targeted HER2 treatment Perjeta had had amazing results when paired with Herceptin, only it wasn’t available yet for neoadjuvant use when I had my initial diagnosis.  Now, I had been NED (no evidence of disease), or as I like to say, NRED (no radiologic evidence of disease), since October, and the two infusions every three weeks, while tough on my insurance who was paying for them, were not too tough to live with.  I started feeling a tiny bit off when doing flip turns at the pool.  That’s all.  And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on I had to be very close to the screen and with them off wheel practically out of the cubicle.  In my former life I would have chalked it up to tired or hungry.  In my occupation as cancer patient, I knew to request a brain MRI. 

Yup, you guessed it.  Brain tumors! 18 of them! Too poorly differentiated for gamma knife!  Whole brain radiation it is!

I like the radiation oncologist to whom Dr. Raish referred me.  He is smart, capable, has trained under bladebla who spoke on breast cancer brain mets at this summer’s ASCO meeting, and so on.  We made a plan, it didn’t seem a second opinion was going to net me any different options, and I was able to lie down for the mapping and planning stuff the same day.  I asked him when I would lose my hair.  I’ve lost it twice before on treatment.  I just wanted to know.  Planning and knowing is not the worst or most trivial thing to want. He replied that that was the “least of” my “worries.”  Hey mister, it’s not for you to say what I should worry about and how deeply.  I am not a complete idiot. I know it’s incidental.  Give me the dignity of just answering my questions.

Now, the apex, the pinnacle, the climax of medical moments, if you will.  The medical moment that caused me to start generating my short list of such moments. This one was posted as its own tirade after getting home from the appointment. But it belongs here, so feel free to skip!

June 2015:  Thursday is “doctor day” at the two radiation centers I have gone to – more baby-fying, infantilizing terminology if you ask me, but that’s another entire talk.  Children do get cancer, I am not happy to say, but all people with cancer do not suddenly become children, or childlike.

My doctor was gone so another doctor in the practice saw me.  My doctor and I talked last week about next plans and all the detritus to come so I wouldn’t be left hanging with him not there.  So.  The other rads onc came into the room.  I had one question and only one, concerning a drug side effect – nausea.  As is the case these days, doctors, nurses, medical assistants, and receptionists spend a lot of human interaction time looking stuff up on the computer and charting as they go.  I get it.  It is what it is.  I like EMRs, and have no desire to return to paper charts.

This doctor proceeds to tell me that my nausea could easily be caused by the metastases in my liver. 

Me:  Dr. Raish did not mention any metastases in my liver.  (Me, feeling like no way did Dr. Raish sugar coat my situation for me. And if he did – betrayer!  But, he wouldn’t!)

Her: It says here in your May scan report that there are multiple hepatic lesions, suspicious for metastases.

Me:  Could I see that? I have not received a copy of that report yet. (Cue – stand up and read the screen over her shoulder.)

Me:  Um.  The date of this scan is May of 2014.

Her: Yes, nausea can be caused by metastases in the liver. 

Me, in a thought balloon: WHAT THE BLANKING BLANK?  Did you not just hear me?  You are reading the report from my diagnosis of recurrence a blanking year ago!  My records should certainly reflect that I have been NED, at least from the blanking neck down, since last October.  BLANK! 

Me:  My understanding is that I do not have radiologic evidence of liver mets at this time.

Me, in a thought balloon: Jon, let’s get the blank out of here.

Her: So you will probably lose your hair very soon.  Have you noticed hair on your pillow?

Me: No. And I have gone bald two other times from cancer treatment so this is not an issue I really need to discuss.

Her: Do you have any other questions for me today?

Me: No.  We’ll just get on the road and head home.

Me, in my precious thought balloon: Like I said, let’s get the blanking blank out of here.

This is me, the gnarled cancer veteran.  A couple of years ago I would have burst into tears and believed her.  And stressing out my nice, nice husband, that is pretty unforgiveable.

The reason I’m telling you all of this is not to complain.  I do a lot of yoga, I feel centered and calm a lot of the time (given my circumstances), and I can see just how difficult it is to work in health care in the 21^st century.  Time and familiarity are now luxuries.

If you work in health care, I’m telling you this in the hope that you will stop, breathe, and consider how your interaction might be interpreted by a cancer patient.  I do not want to silence you, or make you afraid you may not ever say anything right.  We all need to slow down a little, review a chart before walking into an examination room containing a stranger or someone you think you know well.  We are all humans, and there is nothing easy about interacting with each other.  Say that.  Do you have any idea what a relief it would be to hear an “I’m so sorry, this has to suck really badly.  We’re going to make the best decisions we can make together from the best data and your personal preferences to give you the best life you can have.”

If you are a patient, of any kind, A. keep it together and get to the root of what you want to know.  Or, B. burst into tears if someone has scared you or been insensitive.  Both are appropriate responses to stress.  If you choose B., make sure to go back to A. Persist.  Pick your battles.  The tirade I emailed to my medical oncology office netted vastly improved service regarding authorizations, updating me on delays, and scheduling procedures and scans.  I can’t say as I’ll complain about the stand-in radiation oncologist, as I will have absolutely no ongoing relationship with her.  The reason to bring it up though, which tempts me always, is to change something that is being done badly, for all of us.  I am hoping that my medical oncology office is giving better service in this area to everyone, not just “the lady who won’t stop calling all the time.”  Seriously, someone there actually once said to me, “well, if you would stop calling so much….”  As Amy Poehler and Seth Meyer like to say, REALLY?

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.

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.

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? 

Gnarled, Cranky Cancer Veteran

This is what I am becoming.  But in a good way.  One thing I can no longer summon patience for is an unprepared doctor.  Fortunately for me I understand medical terminology and am assertive enough to push for answers to information that does not sound right to me.  And fortunately for me my regular crew is pretty awesome.

Day 8 of 10 radiations is done.  It has not been bad.  Friends and family have taken turns driving/babysitting me on the daily trips (two hours each way) to Portland.  I know that sounds crazy, but I really did not want to stay in P-town for two weeks.  First of all, there is a heat wave – low 100s in the city and high 70s – low 80s out here.  I am definitely more the out here type.  Second of all, the appointments take literally five minutes from start to finish.  So, if Laura and Jon live in Portland – even in the free housing we were so graciously offered – what do Laura and Jon do for the other waking hours outside of that five minutes?  Why, spend money of course, and not see our kids and our doggies, and be HOT, too HOT.  The rotating driver scenario has been great, even fun aside from the five minutes of whole brain radiation.  My girlfriends really, really rule. I have spent some pretty good quality time with close friends, Jon, and tomorrow with Ani.  I sense a Burgerville seasonal berry shake in the works.

Thursday is “doctor day” at the two radiation centers I have gone to – more baby-fying, infantilizing terminology if you ask me.  My doctor is gone this week so another doctor saw me.  I like my guy.  He is smart, confident, and is whom my excellent oncologist sent me to.  We talked last week about next plans and all the detritus to come so I wouldn’t be left hanging with him not there.  So.  The other rads onc came into the room.  I had one question and only one, concerning a drug side effect – nausea.  As is the case these days, doctors, nurses, medical assistants, and receptionists spend a lot of human interaction time looking stuff up on the computer and charting as they go.  I get it.  It is the way it is. 

This doctor proceeds to tell me that my nausea could easily be caused by the metastases in my liver. 

Me:  Dr. Raish did not mention any metastases in my liver.  (Me, feeling like no way did Dr. Raish sugar coat my shit for me. And if he did – betrayer!)

Her: It says here in your May scan report that there are multiple hepatic lesions, suspicious for metastases.

Me:  Could I see that? I have not asked for a copy of that report yet. (Cue – stand up and read the screen over her shoulder.)

Me:  Um.  The date of this scan is May of 2014.

Her: Yes, nausea can be caused by metastases in the liver. 

Me, in a thought balloon: WHAT THE FUCKING FUCK?  Did you not just hear me?  You are reading the report from my diagnosis of recurrence a fucking year ago!  My records should certainly reflect that I have been NED, at least from the fucking neck down, since last October.  FUCK! 

Me:  My understanding is that I do not have radiologic evidence of liver mets at this time.

Me, in a thought balloon: Jon, let’s get the fucking fuck out of here.

Her: So you will probably lose your hair very soon.  Have you noticed hair on your pillow?

Me: No. And I have gone bald two other times from cancer treatment so this is not an issue I really need to discuss.

Her: Do you have any other questions for me today?

Me: No.  We’ll just get on the road and head home.

Me, in my precious thought balloon: Like I said, let’s get the fucking fuck out of here.

The End.

This is me, the gnarled cancer veteran.  A couple of years ago I would have burst into tears and believed her.  And stressing out the nice, nice husband, that is pretty unforgiveable.

You guys make good money.  The least you can do is prepare to see the patient.

There, I feel better now. 

I am not a hypochondriac.

We have a pretty appropriate saying in my online support group and that is Fuckity Fuck Fuck Fuck.  From the neck down I remain with no radiologic evidence of disease.  From the neck up, another story.  After feeling a little funny doing flip turns and a tiny bit funny sometimes when I turn my head, I asked for a brain mri.  Now, in another life these feelings would have made me think I was too hungry, or a little dehydrated.  In my current life I thought brain metastases.  I always think I need a t-shirt that says "I am not a hypochondriac."  If you have metastatic breast cancer whatever you think might be happening is not the imaginings of a neurotic, overactive mind.  

Turns out I have lots of little brain tumors.  Yup, I'm not a hypochondriac.  They are too poorly differentiated to be able to have targeted radiosurgery (gamma knife) done.  Today I will have the first of ten sessions of whole brain radiation (wbr).  After that I will discontinue my beloved Perjeta and Herceptin for drugs that cross the blood brain barrier - these are Xeloda (an oral chemo) and 

Tykerb (an anti-HER2 agent whose molecules are small enough to cross the bbb).  I was also put on an aromitase inhibitor to address the hormone positive status of my current cancer, and I will take an anti-Alzheimer drug (off label use) per recent excellent data that shows it mitigates the cognitive effects of wbr.  For more of the technical crap see Jon's blog www.joninastoria.blogspot.com.  

It was a good year of feeling mostly very healthy with few side effects.  Those days are done.  Up side - I quit my little part time job which frankly, I didn't enjoy much at all.  Shit's getting real as they say.  The radiation should buy me time but rather than thinking in terms of say five or even ten years, I think in terms of one or two.  It's possible I'll have more and possible I'll have less.  We never know what new treatments are coming downt the pike that could help me.  There is at least one trial that really interests me but at this point it is only in phase 1b.  

Anyway, my strategy is to do lots of yoga, lie around with my family and my dogs, buy some easier crossword books in anticipation of getting even dumber than all the chemo made me.  Bucket lists are wierd.  I wanted to go to Paris but really the thought of it is exhausting.  The things that make me happiest are hanging around with my kids and husband and friends, doing yoga, walking the dogs.  Even at my chemo lows I was and will be really content texting back and forth with my daughter when she goes back to school.  She is hilarious.  We have a planned trip to Belize over Christmas.  That will be a happy thing.  More of a relaxing vacation than touring the great European cities, for me.  

My friends (they are also family) rock.  For 10 trips to Portland for radiation the schedule of drivers is filling up.  Meals are coming.  My birthday was really, really wonderful, especially when I decided I did not need to flit around and be hostessy, but instead planted on the couch with whoever wanted to plant there too and talk and laugh.  

So the update is, things are a big giant shit sandwich, but we are supported and loved while we hold our nose and deal with it.