Sunday, December 30, 2012

Couch time

As I log untold hours on the couch, I have been sitting here reading other people's breast cancer blogs.  You know, it is amazing how many ways there are to be treated, to experience hardship and complications, to carry on because what else is there to do, really?  I am appreciating all of the experience of others, if only to confirm what I never seem to know for sure, that I think I am pretty lucky.

Today's good luck includes Jon and Ani making mushroom rissotto and roasted butternut squash for dinner.  I am not sure how much better it can get than this.


How do you tell the difference between good luck and bad luck?  Sometimes I feel extremely unlucky, and other times I feel lucky.  Obviously, getting cancer is a stroke of extreme bad luck.  However, I got a treatable cancer (so they tell me; I try to believe them).  It was found before it had metastasized, so that is pretty lucky.  It is not pancreatic, or lung, or ovarian, or liver, or kidney, etc. etc., all harder to treat than the breast cancer I have.  I acquired my cancer after the HER2 marker was discovered and also a targeted therapy for it.  That is pretty lucky.  I would have been out of luck on that score a dozen years ago.  I have been pretty lucky with relatively (it's all relative) mild side effects, and I haven't had to delay any treatments due to complications.  My husband and children are healthy.  Believe me, I am filled with gratitude for this simple fact.

And yet...  I still feel pretty unlucky.  Like when I went out to dinner with girlfriends, observing all of their excellent and intact hair, listening to the chat about normal things in people's normal lives, trying to participate when nothing feels normal.  Then again, I just love my girlfriends, and there I was, out for Thai food, so it's also lucky, right?  I realize over and over that people have done what I am doing and much worse, with aplomb and good attitudes, and I do try to maintain a good attitude much of the time, but having crossed over into this world of cancer, it is not easy.

Many will point out that viewing oneself as either lucky or unlucky is a choice.  For some, depending
on temperament, one or the other would be the default mode.  I am reluctant to admit, but will, that unlucky is probably the default mode, and I have to make a conscious shift to feeling lucky, which is why I constantly list out the reasons for my good luck with this whole thing.  Not to use my Jewishness as an excuse, but the Jews have not been the luckiest group, and I am pretty sure that fear and uncertainty, and worry, have come down through my completely unadulterated, un-mixed Russian Jewish line.  My nature is admittedly not a glass-half-full one, a lemonade-from-lemons

temperament.  I wish it was, but I know myself and I am what I am.  So I need to force the issue of what might be the good luck in my situation (see above list of lucky points, of which there are many).

Strange, the chemo is done, and I should be relieved, and thrilled, and excited to start feeling better.  I am all those things, but there is simultaneously the scary fact of no more poison.  Whatever the poisons have accomplished on my behalf is done.  I know for others and myself, who have gone through chemo treatments, there is definitely a desire/dread relationship with the poisons.  I could not wait for each three weeks to come and go, so I could have another dose, while knowing how badly I'd feel as a result.

It is amazing how tired a person can be.  I have been too tired to reach over for my glass of ginger ale and drink it.  I have been too tired while standing in the shower to turn it off and get out.  Luckily, that part lasts only three or four days.  And I will continue to look for the good luck wherever I can see it.

Friday, December 28, 2012

Last chemo

Well, I've had my 6th and last chemo treatment (I hope).  Anyone who has had chemo knows though, that the last chemo will not be done for two weeks or so, when I start to feel better.  So, more accurately, I have started my last chemo treatment.  As you might know, then I will have surgery and likely radiation.

Then, the return to whatever normal I can muster.  I read the blog of another woman also finishing chemo the same day as me.  I have to share what her doctor told her, when asked how she will know she is cancer free.  Essentially, the answer was, we'll know the cancer did not come back when you die of something else at age 96.  I found this to be succinct and pretty real, and will not soon forget it.

I will be curious to see what my normal is like.  And a new life of coping more concretely with the unknown than even a worrier like me coped with in the first place.  

Anyway, onward: one more visit with the plastic surgeon, one mri to get final measurements for the surgeon, surgery and recovery, and the pathology report that will tell whether radiation will be forthcoming or foregone.  Day by day.

Wednesday, December 19, 2012

All good

Dr. Garreau was thrilled with my progress.  Though the scans do not tell her whether there is any cancer left, they do tell her that whatever is there, scar tissue, dead tissue, or cancer, is much smaller. She believes the surgery will go very well, and has only positive predictions about everything.  Surgery is scheduled for January 22nd, and the pathology results from it will tell us if there is to be radiation.

All that said, I cannot shake the anxiety of the whole thing.  I guess that is not surprising, since I do have cancer and all.  So, I will just continue to try to breathe deeply, be in really good shape going into surgery, and wait.  I liked that Dr. Garreau said that chemo is the worst part, much worse than surgery, so I'm glad I will have it behind me very soon.

Sunday, December 16, 2012

What to say

Well, since I last wrote of my paltry problems, like whether to run when it is raining, and how tired I felt, twenty families lost a child, and seven more famillies lost loved ones, in really the most senseless way I can possibly imagine.  I have two friends that have lost a child, in very different ways, but the bottom line in there is nothing worse than that, not breast cancer, or chemotherapy, or being bald, or even worrying about my own possible death.

My wonderful cousin, who I've mentioned here before, lives with her husband about seven miles from Sandy Hook Elementary School.  They have lived in Newtown for a long time. I am sure that like all of us, they did not imagine their town would ever be spoken of on a list that includes Columbine, Aurora, Virginia Tech...  It is a pretty New England town like the one in which I grew up, and now it is shrouded in shock and grief and sadness, and it will never be the same.

I am not going to write a diatribe about gun control, which I believe should have happened long ago.  To what end does someone own an assault weapon?  Our humanity, and the U.S.'s assumed status as a first world country is questionable to me, when we allow the potential for something like this to happen.  I am just going to say, as cliche and useless as it sounds, that my heart is with the parents and families whose children and loved ones are dead, and with a small town that will have to move through this somehow.

As far as my situation, just as a quick health update, this week I have felt better than I have felt in a long time.  I think that means I am at about 50% of my normal capacity, but I am not sure, as my normal self was here a long three months ago and it's hard to remember.  Tuesday I will have a routine visit with Dr. Raish.  Wednesday I will have a CT scan and and appointment with Dr. Garreau in Portland.  As routine as all that is supposed to be, the scan definitely causes some anxiety, and one way or another I will be happy when it is done and reported.  I think.  I hope.  Anyway, I will also visit the plastic surgeon in early January to finalize plans for my new rack.  And that is about all.

Tuesday, December 11, 2012

Running in the rain, and a pathetic advance

I will try not to be corny when talking about the rain.  You know, all that stuff about the many words Eskimos have for snow, and all that.  Here on the Oregon coast, we do need many words for rain, as there are many, many different kinds.  I have run in all of them.  Today, since there is no name for it, it was doing that medium-hard drizzle thing that seems hopefully drizzle-like when you step out in it, but quicky soaks you, your shoes, your fancy dog if she is unlucky enough to be with you (I have learned to leave her home - she really does not like it, so she was not out there with me today).  It has since morphed out of "drizzle" and into a perfectly honest, very hard RAIN, with a little more wind thrown in.  There should also be consideration given to temperature.  There is a vast difference between 50s (totally comfortable) and 40s (with rain, very cold).

This morning I made the strategic error of being in front of two episodes of Homeland while it was actually very lightly drizzling, which is not very wet at all.  Then, it started pouring.  I decided to wait out the pour and hope for a less wet interlude, during which I killed another 40 minutes watching Modern Family (yes, people, some days are like this).  After realizing I was not to be gifted with a little dry break, I got dressed, ate some chicken salad for fortitude, and headed out.

As is unfailingly, always the case, it sounds worse on the roof and windows than it actually feels.  If you live in a place like this, like to run, and hate treadmills, you too will be dressing in appropriate gear and heading out the door.  I have to say, now more than ever, it makes me happy to do this.  There is something incredibly cleansing in it.  I wear a liner beanie I got years ago and never used until now, underneath my trusty Portland Marathon ball cap, and wait for the sensation of a prickly, sweaty head.  Every time I go, manage it, get through it (today I crossed a line, people, and talked to myself out loud), I am better than I was before I went, physically, mentally, emotionally.

As every wet winter begins here, without fail, I am heard repeatedly to say, "Why the fuck do we continue to live here?  Isn't it time to get out?  Live somewhere normal? With sun, and snow?"  Ask anyone in this house, it is a chorus on repeat.  I try to watch my mouth.  It doesn't always work.  The chorus is exacerbated by strong winds, which I have extra bad feelings about.  But maybe this challenge of getting myself out in it, when it is neither pleasant nor easy, is one reason we are still here.  It is helping me be stronger, and requires a certain determination that frankly, you just can't exerience in a place with pleasant weather.

Now, to the pathetic advance.  The whole time I have been bald, I have been pretty self-conscious, unless I am in my house. I pretty much wear a hat everywhere.  At the pool, I got into this ridiculous routine of transitioning from my hat to the swim cap in private, and then wrapping my head in a towel in the shower and doing the transition in reverse.  Ridiculous.  I don't really mind how I look without hair, it's the concept, and the potential for having to visit the issue with others that keeps my head covered.  Anyway, yesterday I just wanted to feel my head in the air.  I was so sick of having it covered that I sucked it up and did my locker room stuff, fully exposed.  Know I am not a modest person.  I have never felt the need to cover up in the locker room, ever, until now, with my head.  So there I was.  One woman witnessed me, we chatted about the usual stuff (water pressure in the showers, hot water, etc.), and that was it.  My big psychological advance, there you have it.  I probably won't need to uncover myself while running, as by the time the weather is good enough I should have some hair.  I tell you though, fresh air on a bald head feels really, really good.

Jon Here: A funny Hanukkah story. So we do little fun presents every (or) most nights of Hanukkah. After the first night we were aghast that we forgot Mia in the presents... Well I went to the local dollar store and bought her some raw hide chew toys since we have never given her one before. The second night of Hanukkah, I got excited and so did Mia and gave her a mini raw hide bone. She just looked at it like what the heck am I supposed to do with this. We tried throwing it and playing with it, but she just basically looked at us. Then last night, the third night, I gave her a longer different shaped raw hide and she just looked at me incredulously as if to say, Um, we went through this last night, I don’t do raw hide bones!!  Or is it she knows we are not allowed to buy food for us to eat ath the dollar store and she won't eat it either because it is old...  It is so strange because she is such a food hound... Ok, this really has nothing to do with anything, but she is such a character and Mia has been the one really taking care of Laura!

Monday, December 10, 2012


I do have some fears about finishing with all this, which I guess is a good sign, that I sense I will finish with it.  Still, my fears make for another Catch-22.  There are a lot of those.  I am afraid I will come out the other side of this and be completely different.  And, I am afraid I will come out the other side of this and be just the same.

I don't know how to picture what would be so completely diffferent about me afterwards, but I fear the potential.  Of course, there are good ways to end up different.  I could find my passion, my life's purpose.  Not to brag too much about my cousin, but post-cancer she has created a fulfilling and purposeful life of being a patient and research advocate for breast cancer.  She is brilliant and well informed, and of use to many, many people, including me.  I could finally have the epiphane of what I want to do with my life, which if it happens will have been a LONG time coming.  I could find myself gainfully employed or focused and on the path back to school, for something I am sure about wanting to know.

I could spend the rest of my life grinding my teeth down to nothing with worry, which I realize is what I am doing now.  I could remain hidden away in my house, removed and permanently different from most of the people who know me, except for the people who have or had cancer, feeling like an alien.  I know I have always been a worrier, but I could end up a pretty different type of worrier than the standard Jewish girl I have always been.  I could be permanently stuck in my foggy chemo brain, unable to really function outside the house, in quick or lively conversations.

Or, I fear I could come out just the same - uncertain of my prospects, sending out resumes for work I don't have the confidence I could do.  I can't think of anything more depressing than coming through all of this only to once again be sitting around with the Daily Astorian help wanted ads.  And yet, I knew when I sold my lovely book shop that gainful, satisfying employment would be hard to come by again, especially after having a job I loved for many years.  Granted, the last years were difficult, and I had stopped being able to love what the business needed to become to survive.  Another Catch-22 was before me.  I loved being a bookseller, but there was no longer a place for the bookseller I wanted to be and had been.

Even before the cancer, I began to realize as my bookselling days became more distant, that I had forced myself to lose a large piece of my identity.  I would see people in the grocery who knew me in the book shop, and eventually over time, some literally stopped recognizing me.  For real.  My bookseller self actually began to disappear.  I had another identity, of which I was very proud.  I was an elected school board director.  That identity closed itself up quickly, by necessity.  At the swim meet Saturday an aquaintance asked if there were to be budget cuts in the upcoming year.  I had no idea whatsoever (though here in Oregon "yes" is a pretty good guess).

So, people say that cancer kind of strips a person bare.  Many people say that there is a very clear line that separates life before diagnosis and life after, and I find that to be true.  As soon as I was diagnosed, I literally had trouble remembering before - the immediate before, two lovely weddings during August, our trip to Maine, and actually the whole year became a blur.  So inevitably, I have to wonder what the distinction will be between who I was before and who I will be after.  I was somewhat of a neurotic, messy person before... The mystery awaits.

The funny thing about all this is that last night I was talking about it with Jon, and for the first time I can remember, he had no answer.  I left him without speech, which if you know him, is darn funny.  He did finally come up with the idea that he thinks my fifties will be powerful years.  I will hold on to that, and hope for the best.

Sunday, December 9, 2012

Tasmanian Devil

The pork was pretty good, but the movie was not.  Why do I continue to believe that a recent Will Ferrell movie might be good, and not just stupid, offensive, and, um... stupid.  Ah well, there are worse mistakes...  We have seen some good movies recently, Beasts of the Southern Wild, Argo, Moonrise Kingdom, and yes, Skyfall.  And on lonely weekdays, Homeland and Downton Abbey continue to prop me up, especially Homeland.  Just the right amount of stress and tension that belongs to someone else.  Perfect.

True to pattern, yesterday may have been the worst of it.  Three full days post chemo, when the steroids wear off and just the poison remains.  Today, I will head to the pool to try to get myself back to my "normal."

Last night, my sainted husband ( have I mentioned lately how sainted he is?) roasted a chicken and made the latkes.  I cannot remember a Hanukah where I did not make the latkes, and usually five to ten pounds of potatoes'' worth for friends as well.  Last night I just could not do it.  I peeled three potatoes and left the rest to Jon and Tim.  The great thing is they tasted really, really good, as nothing had all day.

I love how much my son loves holidays.  Hanukah's cool partly because of playing with fire every night, but he really takes them all pretty seriously.  He likes rituals, presents of course, he ate about twenty latkes, and he is gearing up to help Jon get a tree today.  I have always been neglectful with holidays.  Presents, cheeriness, decorating - not my forte (don't laugh).  But my husband and son take it on and Jon has never let any go by neglected.

I have gotten lazier and lazier lately.  I know it is a bit unavoidable, but I have no idea how the family would even be functioning if not for Jon.  He cheerfully does Everything.  I manage some of the dog walking and very occasional cooking, I have been seen sweeping a floor once or twice, but that is about it.  Everything else is him, and the kids, and friends.  I am also glad that Ani is so on top of her own life and obligations.  She seems to exist in a plane of ultra-responsibility, competence, and organizational skills that rival anyone.  So, I will attempt to let the holidays happen around me, eat some food, enjoy my humorous son and straightforward daughter, and my husband, like the Tasmanian Devil, making it happen.

Friday, December 7, 2012

Here is Laura during chemo # 4.  Eating some sort of delicious made by Jon's workmate Brian.

Help is good.

Have I mentioned my friend who came over and cleaned my house, and I mean really, really cleaned, the day my in-laws arrived?  I don't think I have.  I have to say, it was stunning.  I am sure I could have rallied and faux-cleaned up for them somewhat adequately, but this was just so cleansing (literally) and completely generous.  This happened before Thanksgiving and I am still not really over it.  This friend showed up in completely no-nonsense fashion, told me not to wear myself out, unpacked her bucket of supplies and went at my mildly disgusting house, which is also mildly large.  One really amazing thing is just how much of an energy drain it would have been for me to do, and do that well.  Scary, but true.

Chemo takes its toll.  Even with the nausea preventive drugs and the mitigation of some of the worst side effects, it takes its toll.  Between the exhaustion and the overthinking, it is definitely taking its toll.  I am attempting to prepare myself for a morning of timing a swim meet tomorrow, and from my vantage point in chemo-land, it seems like a really big deal.  I have always had the nice perk of people being surprised that I am as old as I am, which is 49.  Now, I feel old, I feel like I look old, and normal things like grocery shopping seem daunting and hard, as if I were very old.  I may be forgetting what I am normally like.  This is probably a surreal side effect of chemo, not much discussed in the literature.  I wonder sometimes, if my brain will ever feel at all quick and curious again, if I will feel fit and strong running, even sometimes if my hair will really grow back, even though they say it will.  Some states begin to feel permanent, and after a mere 12 weeks of this, it does.  I can't decide whether time is going by quickly or terribly slowly.  Jon pointed out that in early September when he bought our Springsteen tickets it seemed so, so long to wait for a treat.  And now it is passed.  Was it quick or slow?  From my vantage point, living in my three week increments, I honestly can't say.

Sorry for the postings that always seem to skew towards the miserable.  I start to write and let it go wherever.  I will try to end on a positive note: the trajectory of my evening includes pulled pork over toast, and a trashy Will Ferrell movie with my man and my boy.  In any circumstance, that really does not sound too bad.

Wednesday, December 5, 2012


Live from the chemo lounge...  Jon just left to go back to work.  Which leaves me with the ipad and my book.  The ipad wins out.

I swam a mile before coming here.  Every day of chemo with probably five exceptions in total I have swum or run.  I have insisted on swimming no less than a mile, and running no less than three, usually 3.5 - 4.5.  I feel like I have to do these things, to feel like me.  I am gaining some weight, probably due to steroids, and that is an oh well.  Jon says it is probably better than losing weight at this point.  Anyway, when running I don't use an ipod or any devices.  I just leave it open to thinking (sometimes dangerous), observing how I am doing, noticing what is around me.  What I am noticing is how much harder it is getting to do it.  It is hard to make myself get ready and go, either swim or run, and it is so much harder to do than it was.  Basically it feels like I am not very fit, and while I don't keep track of time I know I am a lot slower than the slow I have always been.  But I have insisted on doing this one thing, excercising daily.  The days that I haven't I have just felt more lethargic and sad.

My town of Astoria is chock full of brutal hills, all of which I have run, and cycled, over the last many years of training for this or that.  These days I keep it to some variation of the loop around the lagoon by my house, which is flat.  There is a small hill leading back up to my house, which in the old days I did not consider to be a hill at all, and now I have to talk myself up it.  I tell myself I have to run, not walk, up it, as part of the keep going mindset I feel I have to have.  I scold myself that if I can't run up this poor excuse for a hill I will never make it through the rest of chemo, surgery, radiation.  And so, with one exception two weekends ago, I have run my whole runs without stopping.  Swimming is similarly taxing, though it has always been less laborious and more rejuvenating than tiring.  I am always, always immensely satisfied after I swim, even if I am extra
challenged during it.   I am grateful to be able to swim and run.  The yoga never panned out into a habit this time around, but I am happy with what I am doing.  I wonder how it will all go during the last and probably most fatigue-ridden third of the chemo.  I know that post surgery I will not be running for an extended period, and not swimming for a more extended period, and that will be a challenge for me both mentally and physically.  I think moreso mentally, and will have to cross that bridge when I come to it.  For now, I hope to stick with my mileage, and simply keep going.

Sunday, December 2, 2012


Bader Ginsburg, that is.  I did in fact buy Jeffrey Toobin's new book "The Oath" during my little spree last week, and am managing to read it.  The other night I learned that in 1999 Ruth Bader
Ginsburg had colon cancer and received radiation and chemotherapy for it, during which she did not miss one single day on the bench.  And here I sit, most days, alternating between the couch and the other couch, occasionally doing an errand or a mellow excercise session, coming back home, complaining.  I need to think more about this tiny, amazing woman.  I am certain these treatments made a person feel a whole lot worse in 1999 than they do now.  How did she manage it?

Jon says that were I a Supreme Court Justice I would manage it too; I am not, so I don't have to.  Still,  it is intriguing, isn't it?  I admired Ginsburg plenty before, but now that admiration has turned into more scary-stalker-fandom.  My own little Catch-22 problem is that I have nowhere I need to be.  If I had a job, I would still manage to do it on a lot of days of chemo.  I don't have a job, and did not plan on cancer being part of my transition from bookseller to something else, but here it is.  The catch is that it does not feel appropriate to look for a job until my treatment is done.  I still have the hardest third of the chemo to do, a major surgery, and likely radiation, which I believe will involve day trips to somewhere, five days a week.  Plus, my job hunting confidence will improve with hair growth, I have to admit.  So....  the upshot is, unlike Ruth Bader Ginsburg, or my mother or cousin (who also worked during their cancer treatments), I am not working, and thus spend a lot of my time feeling like I don't have enough energy to do anything.  It just goes to show - context and circumstance are a lot of this.

The solution to this conundrum?  I have no clue.  As with much of what life throws at a person, as lucky or unlucky I can feel when inappropriately comparing my situation to others (that pendulum swings very, very widely on any given day), I just have to muddle through it.  On a good day I go with the flow and enjoy watching Homeland or Doc Martin or Modern Family, and reading magazines, guilty pleasures in another life.  On a bad day I feel useless, and like a spoiled baby.

I have six more weeks of chemo to work this stuff out, or not, and then I will have a big surgery from which to heal.  As my friend told me in the pool yesterday (actually, in the hot tub - the hot tub was longer than the swim, unheard of!), next year when we are in the hot tub getting ready for a hard swim, this will all be a distant or not so distant memory, but a memory nonetheless, and I will have made it out the other side.

Thursday, November 29, 2012

My religion

Well, I know I said I have no religion, but last night I did find it!

This week has been pretty craptastic, physically.  Sunday I started feeling weirdly sick, and by Monday was down, down, down...  It turns out that what two doctors have told me is an upper respiratory virus or infection looks really nothing like any upper respiratory thing I have ever had.  This should be par for the course by now.  I forget, every time some bizarre thing happens to me, that this stuff has happened before and will happen again.  Chemo makes everything weird.  This one has taken the form of a hard, swollen lymph node in my neck, making everything from my neck up to my teeth hurt, and hurt a lot.  Go figure... I think my pain tolerance is pretty high, but this has been ridiculous.  I am on a course of antibiotics, and Vicodin after failing with Tylenol and Advil.  Of course, suddenly having a gigantic lump in my neck did cause a ridiculous panic attack, with doctor visits in which I had to be talked down from the certainty of having cancerous tumors invading my neck and head.  I am loathe to admit any of this, but why bother concealing?

Back to the religion bit.  In the midst of this little mini-crisis, loomed last night, the date of the long awaited Bruce Springsteen concert.  I saw him perform in 1979.  I did not even know if I should try to go, but figured I could just sit in my chair and hope the person in front of me sat occasionally.  Jon carted me in to Portland, to our fancy hotel where I lied in the bed until it became clear food should be eaten.  Long story a tiny bit shorter, the concert was amazing.  It was so sentimental to me.  He played every song I hoped to hear (almost), but told myself I probably wouldn't.  It was basically undescribable, for me, to be there.

The religion and rapture of my teenage years returned to me, if only for a night.  I spent from about the age of 13 to I-don't-know, worshipping at the altar of Bruce, as did my peeps, especially my beloved summer camp peeps.  And last night, I got to return there, briefly, with all the other middle-aged folks at the Rose Garden.  It was definitely worth powering through the crap to be there.  So there you have it, my own personal religion story.

Friday, November 23, 2012

This is a test

Blogger just does things, without my permission, like change my fonts and send the text out beyond the borders of the box.  Tim says, bla bla bla ipad platform bla bla blogspot bla platform bla bla not compatible bla bla bla.   At least, that is what I hear.  I am picky about fonts, lord knows why, something to control, so I need to post and see what blogger gives me.  If you are reading this, I could recommend some good books or magazine articles, as you must be incredibly bored to stay with me like this!

I believe we had an excellent meal and excellent pies last night.  I can't be completely sure because the food did not taste like much of anything to me.  I cooked and seasoned a lot of it, and I know I am a pretty good cook, but I found myself salting and salting again and hoping the rest of the table wasn't eating the same bland food I was.  I hope this lovely side effect goes away after chemo, that my taste buds aren't permanently dulled or dead.  It is no wonder I love eggs right now.  The texture is comforting, and their blandness is a triumphant quality of their perfection as a food.  Brownies are sweet enough to taste, and taste good.  Ice cream is adequate.  Lots of things taste pretty good if I salt them enough; potato chips are especially sublime.  I am a cook and an appreciator of food, and for the most part I can enjoy eating and rely on texture and memory to sustain my meals, but somehow the standard Thanksgiving fare last night did nothing for me.  My husband, children, and in-laws were adamant that the meal was spectacular, so I guess I'll just believe what they say.

I walked into Powell's the other day and, without blinking an eye, dropped money on three hard cover books.  It is pretty easy to spend money these days, on books, or a new couch, show tickets, or rockin' boots... Whatever.   I have talked to other people who, when in their cancer universes, had a pretty blase attitude about money spending, as in "it's just money..." I will leave it to Jon to keep track of when this gets too over the top, which for any that know both of us, is playing a dangerous game.  I am the usual cheapskate, the keeper of the money spending gate, and all bets are off with me right now.  I have to say though, it is really pretty fun, and will likely abate as my taste buds and hair begin to return.

Wednesday, November 21, 2012

Me, seeing a plastic surgeon

Re: the title... Not something I ever imagined doing.  It is almost funny!  But we really 
liked Dr. Popowich, and this is the next thing to begin thinking about, or not, along the way.  
For now, the details might be a serious breach of way too much "TMI" but if you want them 
email me.  The Pearl Women's Center was the highest end doctor's office I have ever 
been in.  If you are Grey's Anatomy watchers, it was 
reminscent of Addison's trip to LA, with a Portland twist of course, and Deschutes 
Brewery and Powell's right on the block.  Both were utilized after the appointmnent.

For today, swim, make several pies, prep stuff for which there will be no oven space 
for the bulk of the day tomorrow.

Do not worry (if you were) about the erratic nature of the posts here.  It's just life, 
and each day is different.
It has been exciting though, in my brain compromised state, to get all the tv recs.  
Those should get me
through the rest of chemo, and maybe even into radiation!  

I've been meaning to thank, again, all the friends that have brought us food on the 
meal train.  It has been amazing and uplifting, in ways describable (like the food has 
been really phenomenal) and not (the   
effort our little, though bigger than I imagined, community, has made on our family's 
behalf). I hope my 
people are not in need of meal trains any time soon for reasons like mine - we are a bit 
beyond the 
new baby meal train stage - but if it happens I will be at your door with hot food.

Sunday, November 18, 2012


I feel like a big baby.  But it should be understandable.  I am sick of smiling and pretending to be a good sport about this.  I am also sick of pretending that I am a good person who is not experiencing some level of uncontrollable bitterness at others' seeming lack of problems.  As stated before, it is not that I am interested in anyone else being stuck in my shitty situation - I'm not - but it would require the Buddha not to have some resentment, and I am not the Buddha.  So, I write today in full admission of my unenlightened, shallow viewpoint on life right now.  Even though it does no good, I wonder why me, which is a huge, crappy conundrum that implies if not me, then someone else.  And that does not make me feel too good.

I have not found the silver lining that people with cancer sometimes discuss, where they say their lives are actually enhanced, improved, enlightened by the necessity of dealing with this crisis.  I have read and heard interviews with people who end up glad they got cancer, that it changed their lives in ways they could not have anticipated.  I have not found God, or faith in any religion.  I remain the atheist I have been, and satisfied with that.  Try as I might (I am not actually trying very hard) to investigate whether some faith in something outside of medicine and science could help me, I am coming up empty.  Please don't encourage me in this vein.  I don't mind my pragmatic lack of religion, and am simply reporting the process in my head, as always.   I have not found a way to spiritualize the teachable moments in this journey, though there are plenty of teachable moments.  But... they are just that, nothing more and nothing less.  

On my run this morning, which Ani so kindly got me through, as I felt shitty and winded the whole time, I practiced keeping going.  I guess this is as close to the spiritual as I am going to get.  I figure if I can mentally keep going in the pool or on the street in the pouring rain, that simple act trains the mind to keep going in other ways, as in day by day through cancer treatment.  So... That is all I have... the act of keeping going, which will have to be enough.

I have no idea whether sometime during this year the epiphane will arrive and I will suddenly "understand" the purpose of my journey.  I am skeptical though, and am apt to conclude that it is a piece of shitty luck, which some people have to deal with at some point, or points, during their lives.  I have become one of those people, and my job is to accept it, take the medicine, and deal.

For years I have carried around a "This American Life" story told by a radio broadcaster who had one of those heinous cancers where you're literally living in the hospital for months, getting chemoed just about to death, to give you a chance at a life after.  She said, and I have never forgotten it, that "we think we are the sick and the well," (as if if one is not sick one is safe from sickness), "but we are actually the sick, and the not yet sick."  She admitted to this being a matter of semantics but I have carried the distinction around with me for years.  Maybe as part of my doom-seeking Jewishness, maybe as some form of fearful enlightenment that I understand quite well right now.

Wednesday, November 14, 2012

A long list

I had my fourth chemo today.  It feels like it will eventually end and I will move on to another phase of this bizarre journey.  Dr. Raish thinks everything is going along very smoothly.

In the next month I will have another echocardiogram (apparently I need these after every four doses of Herceptin, of which there are 13 more).  I will see a geneticist, I will have scans and see the surgeon, Dr. Garreau.  I will see the plastic surgeon.  I will have a shot of Neulasta tomorrow to grow white blood cells, I will have blood work and another chemo.

Tragic news.  I am done with four seasons of Mad Men.  I think season 5 is in progress so it will be a while before I get back to it. Tragic, tragic, tragic.  I got disc 1 of Homeland at the video store today.  Unfortunately it is not on Netflix on demand so I will have to be more organized to watch it.  I went there to get Season 2 of Downton Abbey (also not on demand).  It is, however, in demand with the locals so it wasn't there.  If any of you loyal readers know of a great show that is on demand Netflix that is a much easier way for me to watch stuff.  However, I am happy also to support my local, independent video store so this is not a bad thing I guess.

As shitty as my situation is, I am realizing there are people in much, much shittier situations.  So, I am trying not to whine a lot.  Sometimes I succeed, sometimes not.  It is easier to whine in the privacy of my house, so Jon might have a different experience of my attitude.  Still, as far as getting cancer if a person got their pick of them this is a pretty straightforward one to deal with, and for that I am grateful.

Tuesday, November 13, 2012

Long time

It has been a long time since I last wrote.  The days are just flopping into each other, as I have waited through another three week cycle, which ends tomorrow with my fourth chemo.  My brain, as stated previously, remains a huge issue.  Yesterday I completely forgot to go and get my blood draw.  This is so unlike me, to miss an appointment, not even to realize I had the appointment, which was written clear as day on the calendar.  Oh fucking well!  I'm sure I can get it today or tomorrow morning, before the chemo.

I believe that after the fourth chemo I will have another set of scans, so the powers that be can evaluate whether our plan is working, and whether the path we are on is the right one.  Jon's cousin had a word for this: scanxiety.  I'm sure that all reading this have felt completely fine, had some kind of medical test or mammogram or x-ray or blood draw and suddenly found themselves imagining all the horrific findings that are possible.  Or maybe you haven't.  Maybe it is just what I do, or maybe what us Jews do.  We Jews tend to worry about what can go wrong more than most, I think.  Feel free to correct me if I'm wrong! I have done that with every pap smear and mammogram and x-ray I have ever had, and these upcoming scans will be no different, except that the imagined nightmare has actually come to pass.  The marching on of days is the only cure for scanxiety, just to push up dates so things happen as quickly as possible and get these things over with, hoping that the wait for results is not too long.  And of course hoping that nothing complicated or surprising is happening inside my body.

I am still able and glad to run or swim every day.  Yesterday we actually had a family run on Ani's birthday.  All four of us together is a rare occurence out running the river trail.  It was pretty sweet, though I am sure a bit slow for Ani.  My daughter is 17, hard to believe, as cliche as that sounds.

Not to bring politics into this venue, but hey, it's mine and I would like to say how relieved I am about the election, both nationally and the state wide elections.  I truly believe that the lives of my children, my family, and the country and the planet would have changed for the worse if Romney had been elected.  Below find just one of many stories, in which the subject could be me pretty easily, that explains why.

Sunday, November 4, 2012


A friend sent this most perfect poem.   It describes very well some feelings I have previously attempted to describe.

No Lifeguard on Duty

it is difficult
when one is drowning
to wave to the people
on shore

one wants to be
friendly, of course,

but perhaps it is
more important
to keep

- Lois Tschelter Hjelmstad


People often ask how the kids are doing, so it is probably high time for a report.  They are both such intensely private people that I opt not to write about them.  I doubt Tim is reading this blog, but Ani may be.

As different as they are from each other, they share quietness, a sense of logic, and a minimum of emotionalism and drama.  These traits have colored their responses to my cancer.  Tim has Aspergers, for those that don't know.  He is extremely literal, and emotes minimally.  He understands that I and by extension our family has a crappy and challenging year (approximately) to get through.  He informed us early on that breast cancer used to be one of the deadliest diseases for women, but that now most women survive it.  I am loathe to admit, but will, for a laugh, that he cited South Park as the source of this hot gem of information.  He has always been hard to read emotionally, but I think what you see is what you get.  He seems calm about it, and I don't particularly think he is concealing anything.

Ani is a practical girl.  She also the kind of girl that would watch a surgery on youtube that she was about to have.  I know this because she actually did it.  She had a back surgery in March and actually watched one on youtube beforehand.  She is planning to be pre-med, and would never turn away from insertion of a needle, or an injury.  The rest of us find this scary.  Watching her over the last year and a half, I have been amazed at her distinct lack of bitterness about what life throws at her, and at us.  She seems to be addressing my cancer in this same way.  I am pretty sure she has done internet research about my cancer, which is braver than I have been (I confess I have looked up not one single thing, except articles in one cancer magazine and a blog or two).  Like her brother, she is extremely undramatic, and would never be described as wearing her heart on her sleeve.  Years ago when I read the novel "Chocolat" I absorbed the description of the little daughter, "my beautiful stranger" as a pretty apt description of my own little daughter.  Again, as with Tim, I have searched for and worried about all the stuff that might be being repressed or concealed, but each bout of worry has me concluding that what I am seeing is what I am getting.

My teenagers seem to be taking this latest curve ball pretty practically.  They are helpful, they are focusing on school work, which is what I want them to be doing.  Ani is exploring different colleges. Tim is building things in the garage.  Ani usually stops by the chemo room to say hi when I am in there.  She just seems strong, and practical.  I hope I am not completely high to think they are doing ok, but I actually think they are doing ok.  My treatment appears to be working.  The doctors say it is a pretty straightforward path, and that is how the family is operating.

Friday, November 2, 2012

See "The Bull"

I am thinking a lot this week about the Cheryl Strayed passage I wrote about previously (see The Bull).  It really gets to the crux of doing cancer treatment.  I can't veer off, or change my mind, or decide to do something else.  I literally have very few choices, I have to make the choices, and none of them are what anyone in their right mind would consider appealing or attractive choices.  My oncologist often reminds me, none of this is fun.  I am in the process of deciding what to do among the often two things I don't want to do.

For instance, breast reconstruction or not? is my latest of these.  Where the bull is, I have no idea, but I am going to have to pick a direction.  And really, who would say either of these outcomes will be satisfying?  Neither will, but one or the other is what I am going to do.

Yesterday while shopping in Portland I was able to ignore, or sort of tamp down or almost forget about the cancer for a while in little moments of conversation or rabid hunting through sale bins.  I am grateful to my friend for sensing my need to get out of dodge and have some distraction.  I did buy a couple of summer dresses, which I made sure to choose with flat fronts and no shelf bras, in case by summer I have a flat front.

I am starting to wonder whether I really want to deal with plastic surgery.  I know it is more procedures, more time, more pain, and the risk of not being happy with the outcome.  I am the type of person who walks into the house, pulls her bra off through her sleeves, and sighs with relief.  Hate bras, always have.  Being flat, or concave (?), will require dealing with self consciousness, in the locker room, in a swim suit, in life in general.  If practicing this by being bald is any indication, it is one of the many, many things in life that are harder than they look.  I don't know where the bull is, but I am going to have to pick a direction and go.

Tuesday, October 30, 2012


I dragged myself to yoga today, finally.  I had been meaning to try out the new studio for months, and  I have been failing in my quest to practice yoga on my own.  I realize doing that on some level is just one more instance of not leaving the house.  Not too healthy, so I went.  As far as the class, I liked the  one I took last year through the Parks better (cancelled).  But it was a perfectly serviceable Vinyasa.  I was really glad I went.  There was again an extreme kind of rainfall happening, the kind you literally can't run in, and the swim countdown is this Friday.  I sweated, moved, felt like poison was moving and shaking all over my body, in a sickening sort of good way.  I tried to make it a cleansing experience, and will go back for more.  I even let the small group know that I was bald before I took off my hat so as not to freak anyone out, and then I actually took off my hat.  I had been dreading sweating through yoga in a cap, and I didn't.  I have to say the several people were totally nonplussed.

Now, unusually, my arms are like jello.  The whole thing was extra tiring, for obvious reasons I guess, but what the hell, I don't really have anything else I have to do.  I am getting used to my rhythm and if I just decide not to mind watching Mad Men episodes and venturing out one time for exercise, then there is really nothing to mind.

My friend invited me to Portland Thursday to shop a Title Nine sale.  I am jumping at the chance, and realized that the fact that I never go anywhere has been my own bizarre choice.  I feel like I am about to have a vacation from the walls of my house, and the retail therapy won't hurt.

Wow, this is not a bitch session.  Is that a first?

Monday, October 29, 2012

Taking the plunge

I guess that yesterday was the day I made the decision not to keep a separate, private diary.  Everyone I know, and I mean everyone, has encouraged me to write about my experience.  I began to realize that if I do not say what I want to say in this venue, this very public venue that my own mother reads, I will have to maintain another, real and truthful journal in a parallel universe.  I don't have too much energy, and (whine whine) I do not want to keep two journals in parallel universes.  I want to keep one.  So, for better or worse one it will be and I will have to say the private things as well.

The upshot of this is I immediately felt bad yesterday, my go-to emotion, that I might have offended the very people who care enough to ask about me.  The last thing I am interested in right now is alienating people, or making people feel like they don't know what to say to me or how to say it.  I am ok with being asked how I am!  I will also ask how you are, especially this week all my east coast peeps.

What I was/am attempting to process is the tendency to hide out at home, and why.  I think that it is probably natural to want to limit interaction, but I have to be careful.  I am already an introvert, who has always said no more than yes to going out and socializing anyway.  My husband, luckily, has friends who like to go out, and he has outlets for his severe case of extrovertedness, not the least of which is working in two high schools with teenagers.

Anyway, I have been realizing for a long time writing this blog that being matter-of-fact and occasionally funny is not saying enough about having breast cancer.

The HMS Bounty went down off of the North Carolina coast last night or this morning.  Possibly two crew members are still missing.  I used to crew, mostly cook, on tall ships, and have such a sick and sad sensation right now.  Sailors know, there but for the grace of whoever...  In 1986, the evening I arrived at my first such job, washing dishes on a schooner, I arrived for dinner at my captains' house (grammatically correct, people, this couple shared the captainship).  They were stunned and sad to have just received news that the Pride of Baltimore had sunk, and with it several crew members known to them and what would soon become my own small community.  I will never forget that moment.  It has always stuck with me.  I often think, one minute life is one thing, and the next it is something altogether different, unexpected, unplanned.  For the loved ones of the lost on the Pride, for the group tht survived in a lifeboat (no small trauma), and now for the Bounty crew and loved ones, life will never be the same.  There is an interesting amount of metaphors for being at sea, and finding onself being treated for cancer.  The feeling of not knowing what's next, no matter how well prepared for it you think you are; the feeling of being in the act of something with set rules and a usually predictable outcome, except for when it isn't; and the feeling of being thrown into that messy unpredicability, like it or not.  I have been out of the sailing world since about 1992.  I have kept a couple of ties to people from that time and I know they are grieving this recent loss.  I am hoping Hurricane Sandy doesn't bring more than this.  As far away as it is from my house on the Columbia, it feels kind of close to the bone today.

Sunday, October 28, 2012

Running into people

I want to tell myself it is nice to run into people.  I live in a very small town, in which it is hard to go anywhere and not encounter someone you know.  This, for me, has always been a nice thing.  I would say exceptions have been during controversial school board stuff, budget cuts that upset people, etc.

Now, I am amazed at the energy drain that is running into people, and have been making some effort to figure out why.  I guess it is not that hard.  People ask me how I'm doing, and I say pretty well, when I have a disease that forces me to think I might not survive.  This is the reality of cancer, really, any cancer.  In 1996 Jon saw a mole on my leg and forced me to have it looked at.  It turned out to be melanoma, a tiny one, stage 0 or maybe close to 1.  It was excised, I did follow up (still do, in the form of every five year or so blood work and chest x-ray), and that was it, sort of.  Ani was a baby when I was diagnosed with what can now be seen as my, um, practice cancer.  I was scared and horrified that I might not see her grow up, that my amazing life with my new baby girl might be cut short.  As unlikely as it was that I would die of melanoma at that stage in that circumstance, I was afraid that I would.

Now, I am again in a situation of fearing I will not live to see things I want to see.  Like, as a Jewish mother, where my daughter goes to medical school (or when I am really anxious, even college).  Seeing my son graduate high school.  As much as I am told by experts and others who have survived my exact circumstances, there is no way to avoid the fear.  As I have said here, I have tolerated more difficult physical circumstances, but not the difficult things rolling around in my head.

When I run into people, don't get me wrong, excellent people who I like, respect, and in a normal life would love to chat with, I feel the need to hide all this.  I reassure people the way doctors have reassured me, that this is a rough patch of road, that I will come out the other side of it, that I have a "garden variety" treatable breast cancer, that I just have to stay focused (ha) and get through what I am doing.  And it is this reassuring that drains my energy,  because it is not really that close to what I am forced to think about a lot of the time.  Who is forcing me to think these thoughts?  I could say me, and I could wish I was more relaxed, trusting, and centered, or whatever, but it is the cancer word.  I really don't think that anyone with cancer avoids the fear, and I'll bet every one of us spends time trying to reassure the people around them.

I know I keep referring to the anxious person that I am (or was), and really it's true.  Before the end of August I had so much floating around my head.  I can't even tell you any more what I was worrying about then.  It disappeared with the diagnosis.  I'm not saying that's a good thing, since those worries have been replaced with one large knot of a pretty powerful worry.

So, another thing that cancer does, for the weak like me at least, is make you want to hide out.  Encounters are difficult, and tiring, and why bother?  Except that not leaving the house is not an option either.  I have a friend who told me during her cancer she pretended to the world that all was fine, would be fine.  She went about her life in as normal a way as possible, through surgery, chemo, radiation, etc.  (She did, thankfully, have a great outcome, and I am thankful every day to have her to talk to.)  I think we all do that, because what choice do we have?  But I have not gotten completely there yet.  It is still hard to show up at things.  Jon did the school conferences, and brought me reports.  I will forever think I was pretty weak not to show.  I also know the kids are fine, I can email teachers, and Jon chatted with all 13 or so of them.  I have now had half my treatments, and wonder if I will be better able to manage the outside world during the second half.

Thursday, October 25, 2012

Post chemo

Day two...  I seem to get two good days before feeling sick, so today I did a crap load of little errands, ran four miles, bla bla bla.  I am tired now.  Tomorrow I will attempt to motivate to walk with a friend at eight (!) complete with running back to the car.  And still hope to have energy for a lunch date at the Indian buffet.  That place is a real highlight.  I always crave it.  This is all part of trying to follow the advice of a friend who has been through what I am going through.  She said to accept offers of help and socializing, which I haven't been very good with up to now.   I am attempting to actually answer my phone, and (gasp) return calls, which I have not been too great about.  But see?  I have two dates tomorrow, after which I will need a nap but whatever.

Chemo was uneventful.  I did run into a friend in there who is also having chemo, and with whom I had been meaning to get in touch but hadn't.  It was nice to sit and chat with her, oddly comforting to talk with someone in my boat, though I do not, obviously wish for anyone to join me in this boat.  It is a shitty, scary boat, but I am making my adjustments in it.  I will write a longer post when I can think of something incredibly interesting to write about.

Oh yes, there is one thing.  I found the perfect head wear for a bald woman.  If you have a friend who is stuck with a bald head get her one of these.  Go to and search under women's headwear for a Buff.  There is a summer ( lightweight, coolmax fabric) as well as winter variety.  I opted for summer because my hats are so hot indoors.  It is a long tube of fabric, no seams, breathable, and all that, and if you watch the video at the listing a nice woman will show you a gazillion ways to wear it.

Tuesday, October 23, 2012

Alien invasion

This port is sort of freaking me out.  It dawns on me that I have this implant inside my body that will be there for close to a year.  I know it is a good thing to have, I know it is a better delivery device for the chemo, etc. etc.  But I suppose it will take some time to get used to it, and forget to be freaked out by it.  The site is sore, nothing horrible, but it reminds me that the double mastectomy is going to be a  much, much, much bigger and more painful deal.  So there's that too.  I just got home from having my blood drawn through the port for the first time.  For some reason I was very, very nervous.  The nurse was nice, and calm, which helped, and I'm sure she was well aware that what she was doing was No Big Deal.  I have no idea what was wrong with me.  In the end, it took a couple of minutes, was relatively without pain or discomfort, and I went on my way, relieved to have done a test drive of it before the chemo tomorrow.  The nurses also both remarked that it looks very good, in a way that gave me confidence in my surgeon.  Though, I have to confess we have been watching Grey's Anatomy lately, which is probably a really bad show for me to watch.  Surgical interns, botching things and Patrick Dempsey jumping in to fix it.  Did my surgeon do my procedure?  I have no clue, but I guess whoever did it did a really good job.  Last night on Grey's there was even an anesthesiologist who was called out for smelling like bourbon.  Too bad it is such a good show...

I am trying to be "busy," which for me means things like cleaning out the freezer, rewarding myself with a couple of Mad Men episodes, listening to an excellent Fresh Air over lunch, organizing a corner of the living room that is full of crap that needs to be packed up and disappeared.  And that is the sum total so far.  If it is not raining too hard I will run with Tim after school.  This list of things has made me very tired.  I can't for the life of me figure out if that is because of the chemo or because I am doing so little I have made myself this way.  Either way, this is an honest look at my daily life right now.  Not what I had planned, and not a pretty picture.  I had planned to be somewhat through the long transition from bookseller to ______________.  But I'm not.  I attempted to look at GRE questions for a while yesterday.  What a fucking nightmare.  Do I really want to learn all my math again?  I would rather just find work that feels like good work.  Hopefully that is what I'll be doing late in the spring or early summer.  

So there is chemo tomorrow to look forward to.  Yes, I actually look forward to this day every three weeks - something to do that feels like I'm doing something.

Saturday, October 20, 2012

Practice surgery

Yesterday we spent the afternoon in Portland getting a chest port placed to make the rest of the chemo safer to administer.  For clarification, it is not a shunt and has nothing exposed on the outside. There will be a small bump on my skin and it is all underneath my skin, so I can do my normal activities, which is a relief since I will have it for about a year.  I will be getting Herceptin eleven more times after the chemo is done, every three weeks, and will get it through the port.  Luckily, Herceptin is not a chemo drug but more of a biologic type agent so it will not make me sick or prevent me from growing hair after the four months if chemo.  The lame (all relative) news is I cannot go in the pool for two weeks while the surgical site heals.

I love my surgeon. She is brilliant, highly competent, and has amazing social skills (I know some surgeon types lack those).  Also, in chatting, we found out she is also going to the Springsteen concert, and The Book of Mormon!  This says nothing about her qualifications, but it made us so happy nonetheless.  She's One Of Us!  If anyone is curious about her, her name is Jennifer Garreau at Legacy Health Center in Portland.  (Mothers, I know you may want to google her if you haven't already!)

Dr. Garreau also called the procedure a little practice surgery.  Also, we got some clarification on the lymph node question.  That is, I have been asked by concerned friends and family why I am not having a sentinel node biopsy during my surgery.  I had a needle biopsy that found cancer in a lymph node, and the MRI showed three positive lymph nodes.  If a sentinel node biopsy is done, all the information they would have would be about the sentinel node and there is no way of knowing whether there is cancer in others even if the sentinel node shows none at that time (because at this point there is) until they are removed and examined. It is definitely possible that the chemo may clear out all the cancer prior to surgery, but that is not a guarantee.  To do a double mastectomy and leave potentially cancerous lymph nodes in me is not a good idea.  The standard of care in my case is to do the axillary dissection (removal of lymph nodes, in my case, two of the three clusters of them under the right arm).  Dr. Garreau told Jon that my physical fitness and level of activity will help me not to have arm problems, and I am definitely a person who will do all of the recommended follow up, physical therapy, and whatever else to prevent or minimize problems with my right arm.  So that is the definitive word on the lymph node question.
This weekend I am supposed to take it easy, and can probably go for a run by Monday.  I have been thinking about the time period of the beginning of my rheumatoid arthritis for some reason.  2006 and part of 2007, about a year and a half, were pretty hellish.  So far, physically at least, I am concluding that that experience was a whole lot worse than this one.  It was incredibly, incredibly painful, debillitating, and was accompanied by depression that was physiologically caused by my immune response.  I feared during that time that the state I was in was the state I might be in for the rest of my life, which would possibly involve me ending up in a wheelchair.  Luckily my medications panned out and I have been living almost symptom free for the last five years. This current crisis is more of a challenge mentally (and may certainly become moreso physically as time goes on), much more, as the cancer word is involved and with it some pretty scary questions about what the future holds. It is also a condition with outward manifestations (particularly the baldness) that advertise to the world what I am going through, which is also much more of a challenge.
Anyway, that is just some rambling, as this is what my brain does now: ramble.  Happily, my cousin is coming over today, which will be pretty great.

Wednesday, October 17, 2012

Medical update, sort of...

When I started the blog I thought there would be constant medical updates we needed to report to a lot of people in an efficient way.  It turns out that there are rarely medical things to say, though there have been and will be periods of intense medical activity, like when I have major surgery and whatnot...

Friday I am scheduled to get a chest port placed, to administer chemo into a larger vein and preserve my smaller veins.  I was supposed to check in at 5:30 a.m. in Portland, which required us to reserve a room at the hospital guest house for Thursday night.  Avoiding leaving home at 3:30 in the morning was the civilized thought.  The first thing the guest house manager told me was that we cannot go there if we are sick, as people who should not be exposed to bad germs are staying there.  So, of course, Jon and I both caught colds.  I had to cancel the overnight, as I am really not interested in paying for any of the nice hotels nearby the hospital to make it reasonable and worthwhile to do the early check in.  Our surgeon was nice enough to reschedule for late in the day, and allow me to get the port placed in time for my chemo next Wednesday.  The down side?  No food or drink from 8 a.m. on to the procedure at 4.  I am trying not to whine.  I eat often, and alot, and fasting is not my thing.  Sigh...  I am not whining.

On another, cheerier note, say what you will about what a wasteful time suck facebook is (it is, I know), but I was very happy to have it yesterday, as I was having a lovely morning chat from my living room looking out at the Columbia River with a friend working for the Foreign Service in Cyprus.  I have to say I am appreciating virtual contact more and more these days.  I spend a lot of time alone, talking to my dog...  My friends here happen to mostly be teachers, and I had the bad timing to be lying around having chemo starting in September.  Again, I am not really whining about it, just reporting.  These same friends would be the first to point out that I can be kind of an anti-social loner anyway, so it's not like I have had a complete and total life change.

The port placement should be no big deal, except for the probable several days of no swimming.  This too shall pass....  That's all for now, and no foul language either.

Monday, October 15, 2012

One in a thousand, on the couch

Some girlfriends had a laugh last night about the prior post, in which I mentioned I was writing to keep our mothers connected from afar, then proceeded to swear repeatedly like the sailor/cook that I was long ago.  All about that era has mellowed, except the foul mouth, which I find oh so satisfying to use at choice moments.  And a lot of other moments as well.  I know I swear too much, and I don't really think fixing it is one of the important personal improvements on my list of pressing personal improvements.  So...
Anyway, I saw this poem this morning and it spoke to me.


All night my heart makes its way
however it can over the rough ground
of uncertainties, but only until night
meets and then is overwhelmed by
morning, the light deepening, the
wind easing and just waiting, as I
too wait (and when have I ever been
disappointed?) for redbird to sing.

by Mary Oliver

Saturday, October 13, 2012


Hi, I know I've been a little remiss here.  I know the mothers really like to see something here, so I am going to attempt to fill some space with the sadly-nothing-to-report that has been my life this week.  The sad fact is, this cancer thing, like sailing, or lifeguarding, or any number of examples, can be classified in the boredom-punctuated-by-terror school of activities.  Honestly, mostly it is really so fucking boring...

Three weeks is a long time to wait between things happening, and those between times consist, as you know, of trying to get some excercise, making myself useful in some easy way (this week it was dealing with the remaining apples off the trees outside), reading, and watching the tube.  I started Mad Men, which is actually not boring at all, but exciting!  Should I ask the plastic surgeon if I can get the breasts of head secretary Joan?  They are about as impressive as I've ever seen...

Jon suggested a topic if I didn't know what to write about.  He said to complain about husbands!  A rich, full, rife subject matter all women can appreciate.  Well, even though he does annoy me with his penchant for wanting to take pictures of my bald, white, zitty head, he is actually doing quite the bang-up husband job, so I will take a pass this time.

My boredom has given me time to make some observations about having cancer, and to realize and acknowledge some strange thought processes.

1.  It's amazing how many times a day it occurs to me that the people I know are living their lives.  It is cliche, but I am constantly acknowledging the world going on without me, while I wait in my pajamas. Almost exactly these words float into my head at any given moment, as I remember that I have cancer and am doing my waiting, like a literal surreal chunk out of my life with solid, concrete borders.  This is hard to explain and I am not doing the best job of it.  I could be at soccer games, and doing normal things like other people, but it seems to require a lot of a certain kind of energy I don't have to chit chat, and be on the receiving end of concern.  Jon is out public all the time answering questions about me and being on the receiving end of peoples' concern, and bless him, he is good at it.  Don't get me wrong. I am so grateful to my community for caring about me.  It's just that as I said way back at the beginning, I am not a person who likes attention, so this will be challenging.  And it is.

2.  A thought is constantly popping into my head unbidden and unwanted.  It is this: He/she doesn't have cancer.  Believe me, I really don't want anyone to have cancer.  But I see people and it just pops in.  Even at the mention of someone it pops in.  The stupidity behind this thought is I actually have no fucking idea if the aquaintance I just saw at Safeway has, had, or has lost someone important to cancer.  Statistically speaking, all of that is as likely as not.   I feel like a terrible person having this thought, but I have it, like an involuntary reflex, all the time.

3.  I feel kind of infantilized at times.  Maybe it's because I'm bald, like a baby (though my two babies were never bald).  I have no idea how to explain why I feel this way, which leaves me an out and something to write about at such time as I analyze it to pieces and figure out how to articulate it.

4.  The most important one.  I am well aware that there are far, far, far worse things than what I am going through.  The 14-year-old son of an old friend died last week.  My lack of sleep this week is wholly unrelated to my stupid, fucking, boring cancer.

Tuesday, October 9, 2012

An up note

On the up side, I just bought tickets to The Book of Mormon.  January, from what I could calculate it will be between chemo and surgery.  Perfect!

No intellect

Life is wierd on a lot of levels right now.  One of them is kind of a Catch-22.  When this all started, it occurred to me that I have six or eight months of time I can't spend doing many of the things I normally do, but I had a pretty wide range of things I would "take care of" during this down time.

You can laugh if you like, but the range went from figuring out what I am doing with my life, studying for and taking the GREs, and figuring out and applying to graduate school, to knitting all the holiday gifts.  Seriously, I can't seem to do either of these disparate things.  Even I am laughing at my audacity, thinking I could deal with graduate school.  I can't even choose a pattern to knit on which I think I can stay focused.

My brain has lost some basic focus during chemo, which I am aware happens.  This, I am told, is one of the cumulative effects, so it will get worse over the four or so months, and probably somewhat beyond that.  I was visiting with a friend yesterday, and we were acknowledging the temporary loss of my intellectual life.  Being on the school board, as exasperating as it could be, was an intellectual pursuit for which I had a great deal of passion.  Issues were mulled and debated, decisions were made, data were pored over.  I was going to continue studying Spanish this year, but low enrollment precluded the class happening.  Frankly, I don't really know whether I would have been capable of learning right now.  I think I would have audited and just got what I could.  I was also in the midst of job hunting.  My resume was reworked, prime, and ready to go.  I knew I did a good job on that because I had a call about a good, decent job at Columbia River Maritime Museum the afternoon before I started chemo.  Yes, I think I could work many of the days of the chemo cycle, but at that moment there was a lot of complete unknown, and I was not comfortable trying to secure new employment.

So, I am paused, as it were.  I do read.  I read the new Michael Chabon, and am in the middle of the new Junot Diaz.  I know that both are excellent, and I know my other brain would have been passionately engaged, but I did not get fully in.  Both feel a little hard right now, which makes a former bookseller feel a bit pathetic.  Even these are not, you know, that challenging; they are simply good, literary fiction, the stuff I love.  I have really been wanting to read Jeffrey Toobin's new book on the Supreme Court, but I am uncertain whether the focus is there.  I am a wierdo who LOVES Nina Totenburg reading Supreme Court transcripts on NPR.  I loved Toobin's book "The Nine," and actually found it, um... suspenseful in a Supreme Court geek sort of way.  But these days I don't think that is me.

This lack of the intellect required even to knit is temporary, I know, and is another item on the list of things I just need to accept.  At least I can swim.

Sunday, October 7, 2012

Marathon day

It's Portland Marathon day.  Not that I was planning to run, I don't know whether I will do one again or not.  I like to think that sometime I'll do another.  Today, though, I am sitting with the ipad tracking three friends running, me from the relative comfort of my bed.  I'm deciding whether I can tolerate swallowing some Tylenol (why do they make Tylenols so large?) along with the pill I already took for nausea.  This seems to be the hard week, three days after treatment to a week or week and a half after that.  There is nothing to do, really, but tolerate it, and go outside for a bit at some point.

I am wishing I had done a bunch of marathons prior to this.  One was amazing, and kind of like childbirth, it teaches a person to get through the seemingly impossible to the other side.  Triathlons are somewhat like this, though because of the variety, not always quite as mentally taxing.   However, having only done up to the Olympic distance, I am well aware that the half Ironman and beyond would certainly provide that sense of clawing through the impossible.  Once the time passes about three hours, for me anyway, all bets are off as far as feeling sane during any of it.  The focusing is such a good excercise.  I wish those experiences were translating a little bit better to this one I am having now.  I guess when this winter/spring is behind me, I may be looking for a sense of the impossible again sometime.  There is something sooooooo satisfying about completion of these bizarre challenges, and without the disgustingness of it being about cancer I think any and all of it will be immensely fun.  You know, in that suffering fun way...

I am going to get out of bed and go for a run.  I have been intending this for the last couple of hours, so hopefully I am actually about to act.

Friday, October 5, 2012

Waiting, with Dog

Strangely, I am waiting to feel sick.  The masochist in me wants my side effects, which indicate to me that there is a lot of toxic, cancer killing medicine doing its work inside me.  Don't get me wrong. I am grateful for the giant infusion of anti-nausea drugs that give me two or three days of respite.  The nausea has not been a huge issue though, as when that stuff wears off, there are several choice bottles of pills sitting in my bathroom to take the edge off.

I did pretty well with the side effects last time.  Dr. Raish says that indicates the pattern for the duration.  Fatigue, and brain fog will be cumulative and will increase as the treatments progress, but in other ways what I have experienced should remain fairly consistent.

I make a tiny set of goals every day, which makes it sound like a vacation when I map it out, but by the end of it I am exhausted.  Yesterday's included a run, some yoga, making oatcakes (Jon's go-to breakfast grab), getting a shot of Neulasta (keeps the white cells high enough, also causes muscle and body aches), getting groceries, walking the dog.  I completed the list and was toast.

Today's list: swimming is at the top of the list, walk the dog...  Speaking of my dog, I need to admit in public (this being public) what a gift she has been.  I honestly don't know what I would be doing hanging around here so much on my own without her.  She is excellent company.  She takes her role as my constant companion extremely seriously, even though I believe the first year and a half of her life included little to no puppy interaction and lessons about such things.  I am assuming this and I don't know it.

I know she would have been hard to resist, but I also know that when I got her at the pound she was quite longterm hungry, covered with bloody mats and random animal bites, had clearly been a poodle/bichon mix living probably exclusively outside.  She adores us, even Tim, who is not overly interested in any animals.  Her challenge, as many of you know, is welcoming people into the house.  Her poodleness combined maybe with her past circumstances has made her extremely protective.  Tall men in ball caps don't get a warm greeting, and almost no one gets in without a fairly high maintenance dance including Milk Bone biscuits and patience.  That said, she has made first the year after I sold the shop and now this new and bizarre year much, much better.

Wednesday, October 3, 2012

Here I sit...

Well, I wrote most of a post and it disappeared.  Curses to the ipad keyboard.  This will be shorter and I will figure it out later.  It is pretty crowded in the little chemo lounge, though I will mention I am the only one sitting here with my buzzed, close to bald head exposed to the fresh air.

It is sunny out the big windows, I've got magazines thanks to Rachel (especially enjoyed Celebs and their Dogs).  I've got my phone and my ipad, snacks and a trashy NYC based mystery.  All pretty well.

The good news is that Dr. Raish measured my big tumor, which is, for better or worse very palpable from the outside.  Three weeks ago it was 6 cm in diameter and today 3 cm.  He mentioned that when you think volumetrically (which he does) the news is even better.  The lymph nodes feel quite a bit smaller and less defined, vague... which is good.  He also said the tumor feels softer, vaguer and less defined,  all to the good.

I am going to get a chest port either Friday or in two Fridays, which will administer the poisons through the larger vena cava rather than potentially destroying the smaller veins through which it is flowing as I type.

While Jon was sitting here he showed me a rejection email from the Bruce Springsteen people.  Unbeknownst to me he wrote and asked couldn't I come back stage, as I have CANCER.  While I would have been mortified, it was kind of a sweet try.    Jon has the curious and interesting trait of basically never ever being embarassed about anything.  Some of you are nodding your heads right now.

He also took me to Portland yesterday to visit the clinic's wig closet, oh joy.  I snagged a wig which wearing for more than 23 seconds caused me to want to open a vein.  I did snag a nice soft big bandana and a sort of cute hat, and bought one more scarf at a vintage place on 23rd.  I think I am either the bandana type or the commando type, which I need to practice doing gradually in more challenging places than the inside of my house or the chemo room.  It is just sooooo much more comfortable.

That is about the whole report today.  If I haven't mentioned our food brigade in a few days, this crowd bears mentioning every hour of every day.  It blows us away every single time.

Monday, October 1, 2012

Fed up

Well, I got fed up this morning.  Not to belabor the hair thing, but when I woke up it all felt as though it was just hanging off me.  I went to the pool and as soon as I put my cap on I knew my hair might all come off when I pulled it off.  I did not want to deal with this in the locker room.  As nice as all the ladies in there generally are, I still wanted to deal with it in private.

I managed to get the cap off without too much drama after swimming, but didn't dare shower there.  Basically I came home, gathered up a bunch of gear, went into the back yard, and scissored off what I could, following that with a complete self inflicted very short buzz with the clippers.  Surprisingly, as soon as I did it my head felt eons better.  It had been itching and tingling for days, and I was stressed every time I touched it and clumps of hair came out in my hands.

As fine as it felt, I knew it would be an illusion until I can get used to appearing anywhere in public.  So... I threw on a hat and went to the grocery store.  I wish I could say I was completely unaffected and without paranoia, but that would be a fat lie.  I hated every second of it, even ignored a couple of aquaintances.  As I've said here before and I'm sure I will say again... Oh fucking well.  My head does feel really, really good though.

Jon and I have a date tomorrow to go to Portland and peruse the free wig room at our clinic.  Maybe I will find something and maybe not.  I am looking forward to getting my chemo on Wednesday.

Sunday, September 30, 2012

Here are some picture in bed!!  This is obviously Jon with the bed picture post!  The tray Laura is using Tim and I made last weekend for a bed desk.  Laura sometimes eats on it and plays with her ipad and reads with it.  I am sitting with Mia and looking out at the world from my thrown.  As all pets of mine tend to have, Mia has many names.  Today I started calling her Dr. Leslie Marie Trottenstien.  Why? Just cause that is how she wanted to be addressed today.  Sunny Sunday.  We did a family jog for 3 miles and Laura continued for another mile but the rest of us followed Mia home.