I was done with those anyway...and those

I always said that I wanted to be done having kids by the time I was thirty.  My mom always said that she didn't want to be a grandma before she was fifty; we're twenty years apart in age, so you can calculate how this left us at a bit of an impasse.  Unfortunately for her, I had an obliging husband and a series of supportive work environments, so even with a miscarriage I reached my goal with time to spare.  It has all worked out, as these things do, because my mom has embraced grandmotherhood and I am done with my ovaries.  Thank goodness I'm done, because it turns out that the chemo drug taxotere is killing my ovaries.

Ever since the beginning of chemotherapy I've known that the dexamethasone (steroid) made my face flush periodically.  Early on I noticed that the face flush was getting increasingly hotter, and that after each treatment it intensified.  A few weeks ago, I asked how long the 'roid stayed in my system, and Dr. Oncologist said 36 hours.  That's where that conversation ended, but it didn't explain what was happening since I was still getting flush flashes well past 36 hours after my last 'roid dose.  Well, over the last week or two I have come to recognize this face flush as a bona-fide "hot flash", and I break into a sweat for about a minute before I get freezing cold because, that's right, I'm bald.  So on Wednesday I probed into the nature of the hot flashes and left the 'roid out of the inquiry.  As always, Dr. O nodded and explained that the taxotere is killing my ovaries and sending me into early menopause.  It might be temporary, as in just while I'm undergoing chemotherapy.  And that's where she left it.  I'm not sad, because as I said, I was done with those anyway.  The possibility of permanence is kind of unsettling, but I'm also getting used to that.  Basically it's just another side-effect surprise, and I am indeed tired of those.  

Happy New Year to all of you!  I've decided to pass on a New Year's resolution this year.  Anything I posit I can't possibly execute under these circumstances:  be more positive?  Exercise more?  Work harder?  Instead, I am setting a 100% attainable goal:  be the smartest, loveliest, 30-year-old mom without breast(s) this side of the Mississipp'.  I feel that such an utterly subjective goal is appropriate for this situation in which I keep losing strength, feeling, and body parts.  I hope that you too can set attainable goals for yourself this year!  Big electronic hugs from me to you!            

Live from chemotherapy room 9

It's hard chemo day, and I'm sitting in chemotherapy room 9 in a mauve vinyl-covered recliner with a needle in my port.  The Flo-Gard 6201 Volumetric Infusion Pump just started beeping as it finished pumping the first of five bags of drugs that I am receiving today.  The first bag contained aloxi and emend, which are two anti-nausea drugs.  One of my favorite nurses just hooked me up to the second bag, which also contains side-effect combaters:  dexamethasone, benadryl, and zantac.  These two bags will consume the first hour of chemotherapy, followed by 30 minutes for the herceptin bag, 30 minutes for the carboplatin bag, and 60 minutes for the taxotere bag.  The time will pass quickly today, as it does on all hard chemo days, because the benadryl usually causes me to sleep through the chemotherapy bags.  Before I thought to make a blog post I was knitting, getting ever closer to finishing Holly's wedding blanket.  We brought the laptop to watch episodes of Seinfeld from seasons 1 and 2, but blogging is way more fun.

What I see in front of me (in chemo room 9):  a stool on casters, a computer, a sink, two syringes of heparin on the counter (they will be used to flush the port at the end of chemotherapy), a TV mounted high in the corner, a very large window with vertical blinds and condensation along the bottom, a young philodendron plant hanging from the ceiling, (out the window) the last story of a yellow brick building and 3'x6' of bright gray sky.

What I hear behind me (the hallway outside chemo room 9):  the Price is Right blaring from chemo room 8, the beeping of another's infusion pump, a discussion of possible nerve damage in the fingertips as caused by chemotherapy, a discussion of a mega splinter in someone's hand, jokes with a patient about how he "lives here" and needs a wheelbarrow to wrangle his chart, a toilet flushing, a pen dropping, a phone ringing, a plastic grocery bag scrunching, a nurse laughing.

What I smell:  coffee, rubbing alcohol, floral-scented hand lotion.

What I taste:  coffee, orange juice.

What I feel:  a warm laptop in my lap, sore fingertips, muscles that are tired of sitting, chilly liquids entering my body through the port, heavy eyelids, sleepiness.

Here we go again.  Halfway to the finish line!

Cancer: The ultimate white elephant

It was a very merry Christmas in our house this year.  A three-year-old is SUPER fun at when it comes to the whole Santa thing, and we worked it as hard as we could.  We went to the children's Christmas eve service at the Unitarian Fellowship, and Lori did an awesome job presiding over the events.  Azalea got to be a star in an impromptu pageant (she really was a star, as opposed to a bale of hay or a mouse).  We sang several Christmas carols and dutifully held our candles during "Silent Night".  At home we had homemade broccoli soup and Ian's best bread ever.  We put out cookies and carrots for Santa, and, after the girls went to bed, played the highest-scoring game of Scrabble in which I've ever participated.  In the morning the first item on Azalea's agenda was to check and see if Santa ate the cookies and carrots (hmmm...my budding scientist, collecting evidence that Santa exists?), but she quickly moved on to discover her gift.  Santa left her a big yellow dumptruck, as per her request, and a teddy bear as big as Eleanor, for Eleanor.  Santa had stuffed their joint stocking (lame, I know...homemade stockings are in the works for both girls) with kids' Clif bars and Earth-ball chocolates; our Santa is a bit of a hippy, I guess.  An exciting array of gifts were exchanged among our little family, and indeed among much of our extended family.  It was a lovely couple of days, and I am most grateful for the gift of my glorious family, on all sides.

My friend Justin recently sent me a link to a 3-minute talk about a different kind of gift.  It's not a gift that you'd find under any Christmas tree, and since no one really wants it perhaps it's the ultimate "white elephant", but I can see how it might have some gift-like qualities.  Stacey Kramer survived a brain tumor and speaks about the positive effects it has had on her life, as if it were a thoughtful gift.  Maybe when I get to the point where I'm looking BACK on this experience and not TOWARD this continued experience I will be better positioned to see it as a gift.  The gifts given by loved ones as a result of cancer are certainly pleasant, but they don't outweigh the looming possibility of, oh I don't know, dying so young that my youngest daughter doesn't remember me.  I can hear you gasping, saying "don't SAY that!", but this is where I go sometimes (only rarely...and don't all cancer patients of all ages have these thoughts?  Isn't that what makes cancer so frightening, that it snatches seemingly healthy individuals right out of life?).  I suppose that since Ms. Kramer is on the survivor side of cancer she has a broader vision of the impact of the gifts that cancer brings:  of course the outpouring of love and support help the cancer patient feel better, of course they don't outweigh the real negative impacts of cancer, but maybe the primary value of these gifts is the distraction from dark thoughts and the constant reminder of one's place in the world.

I've got a great place in this world.  It is a gift to occupy it.  Oh, and I am totally digging the foot rubs.                  

Happy holidays from us!!!

Dear (your name here),

We hope this holiday season finds you in good health and with high spirits!  2010 has been a memorable year for us, and we are writing to share some of our highlights with you.

After a near-record amount of snowfall last winter, we emerged from winter's blanket eager to experience spring's bounty.  It was Eleanor's first spring, and Azalea reveled in teaching her the splendors of swings and slides.  Their favorite playground was quickly established, and almost-daily trips were made until the first November snowfall.  

The summer brought many excellent outdoor activities, our favorites including free live music at two different parks on two different evenings.  We scarcely missed a single one.  A few mini-vacations to midwestern locations were quite enjoyable, but for the most part it was a backyard summer, grilling and chilling with friends and family. 

 

The girls have changed so much this year, as children do.  Eleanor turned 1 in July.  She is a serious, happy, and easy-going child, and expresses her love by kissing and hugging everyone and everything freely.  Although she remains very quiet, she now has a few words that were of high priority to learn, including "cookie" and "poop".  Revealingly (because Ian is a stay-at-home parent and rockstar father), Ian and I are both called "daddy".  

 Azalea turned 3 in October, but she's pretty sure she's at least 5.  She continues to be outgoing and vivacious while maintaining good manners and a sense of cleanliness.  She loves to read and will frequently flip through books by herself, slowly and deliberately examining the pages.  She is also quite athletic and enjoyed taking two short gymnastics and dancing classes this year.  Preschool can't come fast enough for her (in her opinion).    

Ian and I are doing well, regardless of certain extenuating circumstances.  We enjoyed our first full year in our first house and have executed a few small projects with no major surprises.  Also, although these delightful girls keep us busy, now that everyone is toddling and sleeping it is easier to strike the necessary balance of kid-time and adult-time in our lives.  We changed diapers together, played fantasy football together (don't ask who was on my team because I couldn't tell you), and shaved our heads together.  Tomorrow we celebrate our 10 year wedding anniversary.

We hope that your year has been interesting and sprinkled liberally with joy.  We continue to be amazed by and grateful for your love and support.  Happy holidays!

Love,

Heather, Eleanor, Azalea, and Ian

(shown below all gussied up for Holly's wedding in September)    

   

Breaking news

My boss just called and officially offered me a permanent scientist position in the Food Safety unit at the USDA!  Woo-hoo and huzzah!!!!!!  I am soooo excited!!!  It will be so much fun!!!  I have so many ideas!!!!!  I love being a microbial ecologist!!!!!!

I am also so relieved about the security that this brings for my family, and the options this opens up for their futures.  This is so great.

Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Feeling positively decent

This chemotherapy thing is always interesting, at the very least.  I have a few ordinary things still going on:  I'm easily fatigued, a bit of diarrhea, a bit of dizziness.  But check out these new issues:  eye twitching and sore fingertips.  Weird, huh?  The eye twitching has been going on for almost a week now.  It's usually one muscle at a time around one of my eyes, for example my right eyelid, then my left under-eye, then my left eyebrow, then my right eye muscle that I never knew existed.  All day long.  It's actually not that noticeable most of the time, but it is mildly annoying when I'm trying to fall asleep.  I told Dr. Oncologist about it, and I got that familiar knowing nod, and she said to let her know if it picks up.

The fingertip thing is way more frustrating because it's painful.  I think the pain is actually related to the nails somehow, because they are sore to the touch.  The pain translates to the fingertips when I try to pop the lid off my tylenol bottle, for example.  I can't hardly perform the task.  I think that the skin on my hands is somehow also sore, but that's much harder to define.  Yes, I am experiencing some discomfort as I type this right now, but on a scale of zero to ten, zero being no pain at all, this pain is merely a one.  Nothing worth complaining about, and yet here I am.

Today I'm going to attempt what little bit of holiday shopping I have to do.  Shopping in this town is so easy, and I know exactly what I'm getting, so it should be conquerable before I get too worn out.  Although I hate shopping as a rule, the qualifier is that I mostly hate shopping for myself.  I enjoy a bit of in-the-spirit-of-giving shopping, especially this time of year with the evergreens, lights, and bells.  It'll be GREAT to get out of here for a few hours, and to get a break from the princesses.                

Indulging myself

I've finally figured out the secret to getting through chemotherapy with minimal suffering, and it is doing exactly what my body tells me to do.  The most frequent commands issued by my body, to my body are "Lay down!" and "Zip it!"  (Moving and talking are the two most taxing of tasks.)  Therefore, I have done more body listening this time around, and I am definitely suffering less.  I certainly don't feel good, and to say that I feel "better than last time" would be silly because I'm not trying to do as much as last time, but I am pleased to have a discomfort management strategy.  Although it is odd and difficult to be this self-indulgent with everyone around me working so hard to feed me, play with my kids, etc.

For a woman who has generated nearly 30 blog posts in less than two months, it is curious that I am at a loss for words when it comes to describing how my body feels right now.  It is the most fair and common question that I get from loved ones, and although I have proven to be inept at answering it thus far, I will try again here.  I hurt, but no where in particular and not in an acute sense.  Food and beverages taste metallic, not that I feel like eating or drinking.  I'm constantly what I will call nauseous, although it's a different kind of nausea than when I was pregnant.  Pregnant nausea was acute, and chemotherapy nausea is not acute.  Just a constant crummy feeling in the gut.  And then there's the fatigue, which I've emphasized numerous times and is indeed ridiculous.  My bones are full of quarters (Vegas, anyone?).  The timeline is the other important factor to realize, which is the longevity of this pile of symptoms: the ramp-up of the symptoms between hard chemo and the weekend, max symptoms through the weekend and today, and I'm hoping to get some relief tomorrow but possibly not.  In short, my body is just plain pissed about what was injected on hard chemo day, and it is letting me know.

So what brings relief, in addition to laying down and shutting up?  Hot showers, a heating pad placed on my tummy, back or foot rubs, hot tea, hugs, and sometimes escapist fiction (as suggested by Valentine weeks ago).

And now I am spent.  Naptime, round 1 of 2 today.

Bone quarters

At my request, my dose of IV benadryl was cut by 75% yesterday.  The reason I requested a reduced dose is because about 3 minutes after the beginning of the benadryl drip I am knocked out cold.  Ian wakes me up when the rest of the chemotherapy is over (~2 hours later), and I sleep 4 more hours in the afternoon AND go to bed early.  The following day I have a benadryl hangover.  I decided that this was unacceptable, and Dr. Oncologist was willing to reduce, but not eliminate, the dose of benadryl (its purpose is to prevent an allergic reaction to the hard chemotherapy drugs at the injection site).  It still knocked me out cold for the remainder of chemotherapy, but my afternoon nap was reduced by 75% (coincidence?  I think not) and today I do not detect a benadryl hangover.  Mission accomplished!

This victory is a continuation of side-effect roulette (see post "Side-effect roulette") because with the lifting of the benadryl fog, I am experiencing the onset of the chemotherapy side effects play-by-play.  The previous dose of benadryl basically caused me to forget the first two days following the hard chemotherapy.  Now I get to pay attention, and hopefully remember it.  Although the benefits of forgetting are obvious, this is actually a very interesting experience.  I have a pop-culture analogy to describe what I am experiencing:  did you see that episode of the office in which Jim very gradually placed quarters in the receiver of Dwight's phone?  One quarter at a time, over a long period of time, such that Dwight didn't notice the difference in weight?  That's what the oncoming fatigue is like for me.  It's like every time I sit or lie down, someone adds a quarter to my bones, and when I get up I'm just a bit heavier.

The punch-line to the Office scenario is that one day Jim removes all of the quarters, and when Dwight picks up his phone he whacks himself in the head because his muscles are expecting a much greater weight in the receiver.  Previously my bone quarters have been removed as gradually as they were added, so I don't expect to report that I whack anything.  But to you I will continue to report!

Time to go in for my Neulasta shot.  I will preemptively (and also belatedly in the "port" category) update the poke tally now:  

"port"  7

left arm  4

right arm 3

tummy  3

left breast  1

superior vena cava 1

Juxtapose

Wow, your support is tangibly cosy.  I am so grateful for each and every one of you.

I feel that I did some of my very best work on Tuesday, and it sounds like some of you agree.  The best is all I can strive to do, you know?  No point stressing about it now; instead I'll spend energy being proud of what I've accomplished to this point.  And my accomplishments and I owe a huge debt of gratitude to Ian for all of his love and support, and especially for pausing his career to raise our kids.  Sometimes that seems to be the non-military equivalent of the ultimate sacrifice.  I am so proud of him and all that he has accomplished, both with our kids and in his own life.  (I love being juxtaposed with you, babe--for nearly 10 years now, boo-ya!)

The ultimate juxtaposition, I think, was interviewing for a permanent Microbiologist position yesterday flanked by 3 hours of hard chemotherapy today.  Talk about a phase change; sublimation to be exact.  Sublimation is the phase change from a solid to a gas, like when steam rises off of the now-frozen Lake Mendota in Madison.  I think that sublimation is the appropriate analogy because I felt solid yesterday in my knowledge, abilities, and sense of self.  Diamond solid.  I made good conversation with people.  I articulated scientific points about microbial ecology, antibiotic resistance, and phage diversity.  I ate two nice meals with colleagues.  And now today, as all of those drugs begin coursing through my system, this solid feeling is lifting.  All of these things that I could do so well yesterday are floating up into the atmosphere.  Tonight I couldn't even set the table without forgetting something with every trip.  Must have taken me five trips.  Anyway, it was tempting to posit that "melting" was a better analogy than "sublimation", because I could imagine the chemo drugs washing and eroding my solid self, but I definitely feel like my solid self breaks away into floating pieces.  And sublimation is a much less ordinary process than melting, and what happens to me is far from ordinary.  The good news is that when the floating particles cool off, they return to me for a fleeting moment until the next round of chemo.

As long as we are juxtaposing, let's go for "chemotherapy" and "IV drug use" with a little help from the band U2.  The other day I listened to one of my favorite classic albums, The Joshua Tree by U2.  My favorite song on that album has always been "Running to Stand Still" because it is musically very interesting and beautiful.  The lyrics are poignant, a unique perspective on heroin addition, and evoke empathy despite my inability to relate.  However, this was my first time listening to it from the perspective of a person undergoing chemotherapy treatment.  Oh my, it is now my lovely lullaby to help me make peace with what I am going through.  There might seem to be a few incongruencies, but I do think that there has been at least one day during which I could relate to any given line, some more frequently than others.    

Want to hear the song?  Click here.  I'll leave you with the lyrics below.


And so she woke up 
Woke up from where she was 
Lying still 
Said I gotta do something 
About where we're going 

Step on a steam train 
Step out of the driving rain, maybe 
Run from the darkness in the night 
Singing Ha, Ah La La La De Day 
Ah La La La De Day 
Ah La La De Day 

Sweet the sin 
Bitter taste in my mouth 
I see seven towers 
But I only see one way out 

You got to cry without weeping 
Talk without speaking 
Scream without raising your voice 

You know I took the poison 
From the poison stream 
Then I floated out of here 
Singing...Ha La La La De Day 
Ha La La La De Day 
Ha La La De Day 

She runs through the streets 
With her eyes painted red 
Under black belly of cloud in the rain 
In through a doorway she brings me 
White gold and pearls stolen from the sea 
She is raging 
She is raging 
And the storm blows up in her eyes 
She will... 

Suffer the needle chill 
She is running to stand 

Still.

Interview Eve

I think I just finished putting together my presentation for tomorrow.  I have to give a 50-minute powerpoint presentation tomorrow as part of my job interview.  I've done this sort of thing before, so it's not as bad as it sounds, but it's a lot of work to put together this sort of presentation, no matter how practiced you are.  I thought I had it done hours ago, but tonight when I sat down to practice (not until 8:45, mind you), I found enough errors and incompletions to keep me busy until now, and it's after 10.  Some of you are thinking, "no problem, the night is still young."  Not me.  I've never been one to study or work late, and lingering chemo fatigue makes this impossible even if I wanted to.  But I'll force myself to click through it one more time and think through my transitions (always my weakness and I don't want any surprises tomorrow).  It's a real bummer that it's so late because I had something else for work that I needed to finish tonight, in addition to a desire to call my friend Martha (hi, Martha!  How are you?  I'll call on Tuesday night!).  At least I got the laundry folded and the blog updated, and there's always time for flossing!

Even stronger than my nervousness about the interview is my fear of Wednesday's chemotherapy.  Nope, I'm still not used to it.  I feel like a child (specifically, a red-haired three-year-old child) because my feeling is so basically and powerfully "I don't want to" regardless of the logic I throw at it.  I know that it might be saving my life, yada yada yada.  I still don't want to do it.  I hate the sickness, but mostly I hate the stress that it has brought to me and my family.  I hate my "must complete before Wednesday" to-do lists.  I've gotta stop making those.

Here's what I LOVE:  all of the people who have called or emailed their support for me tomorrow!  And those of you who haven't, I love you, too.  I'm going to do the best I can on the best possible day that I could have!  I just might have to caffeinate to get those brain cells to fire a bit faster.