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. 

  

Scaffolds of people

I had an awesome weekend with Ian and the girls.  We walked four blocks to the grocery store, picked out a small Christmas tree, and dragged it home in our red wagon.  Azalea herself did a significant share of the pulling.  I smell a new holiday tradition for the family!  Needless to say with this good health I will be going to work all of this week, except for easy chemo day (Wednesday).  Speaking of work, I was invited to interview for the permanent scientist position that I applied for before I got cancer (see post "Hey, that wasn't so bad"), and my interview is Dec. 7th.  That gives me one week to put together a knock-their-socks-off presentation.  I think I can, I think I can, I think I can...

On Thanksgiving day I felt terrible with chemotherapy-related digestive issues and lurking fatigue.  This led to the additional phenotype of being antisocial, which ordinarily is not a problem for a family event.  However, Ian had invited a friend of his to join us for Thanksgiving, and I felt (still feel) bad for not doing a better job of drumming up conversations with him.  He seems like an interesting person, he is certainly nice, and he made delightful funny faces for my daughters.  I later realized that an additional part of my conversation deficit was due to the unfortunately few facts (half of which are unfortunate) that I know about him.  I will call this my scaffold of him, which is as follows:

He served in Iraq, in the Army (I think).  His mom passed away last spring, of multiple sclerosis.  He and Ian enjoy watching Monday night football together.  He shaved his head when Ian and I shaved ours.      

I think of it as a scaffold because it is the beginning of my knowledge of him, just as assembling a scaffold signifies the beginning of a project.  I hope to progress beyond a scaffold of this person, and I'm sure I will eventually, but you can see how this particular scaffold presented a challenge for me on the Thanksgiving holiday.  We got a lot of mileage out of the fact that he shaved off a mole when he shaved his head, uncorking a large volume of blood from his scalp.  After that, I couldn't think of an appropriate conversation to launch from my scaffold of him.  

This got me thinking about the scaffolds that other people build about me.  Most of you have known me forever and so your scaffold is long gone (except for when I need repairs in your regard), but what about strangers or new friends who are reading this (such as Bernice L. McFadden...how cool is that)?  Inflammatory breast cancer is certainly a load-bearing post on their scaffolds of me, and I'm not sure how I feel about that.  I have had complete control over most other facts about me; indeed, I have worked hard to assemble this certain pile of facts.  The cancer fact, however, is ugly and interesting, making it a likely component of all future Heather scaffolds.  It's a part of my scaffold over which I have no control, analogous to the death of the mother in my scaffold of Ian's friend.  I'm sure everyone has something like this in their scaffold, some horrible I-feel-sorry-for-you fact, but I'm pretty sure it's my first one.  And eventually I'm sure I'll get used to it, own it, be proud of it.  I just hope it doesn't wreck future conversations before they even start.        

As a result of this thought experiment, I have added a blog feature called "Scaffold of a Person".  I will feature someone in my life and present a scaffold that I would build of them if I were to introduce them to someone.  Let me know what you think...this is clearly one of those things that could be more fun for me than it is for you, although you might find it fun to learn more about fellow commenters.  I promise to only use first names, and to be nice.  Also, let me know if you don't want me to build your scaffold on this blog, because you could be next!

Not just another day-of-thanks post

I have finally turned the corner on the fatigue, and yes it took longer this time.  I asked Dr. Oncologist about that today, about the nearly infinite fatigue, and she said that it's not uncommon for the fatigue to last a bit longer with each treatment.  Argh.  I find it so frustrating to be knocked over by the fatigue, probably because there is so much that I want to be doing.  But it is truly impossible to overcome the fatigue, and believe me, I try to overcome.  It's like someone put lead in my bones.  Nothing to do but lay down and wait (and wait, and wait) for it to pass.  And it is passing.  I'm a third of the way through the hard chemos, huzzah!    

I am aware that I am slouching on my graphs.  This is because my white blood cells are uninteresting.  Apparently I have Wonder Woman white blood cells that are unaffected by chemotherapy, or the weekly analysis is too infrequent to capture their periodic demise.  I will continue to think the former, although the later is certainly closer to the truth.  My platelets, however, are doing something interesting, so let's graph those now.  I plotted "chemotherapy" arbitrarily, giving the hard weeks a value of 100 and the easy weeks 0, because it's easier to do that than give the graph a second y-axis.  You can see that my platelets hate the hard chemo as much as I do, if not more.  Dr. Oncologist says not to worry, I'm not going to bleed to death, but don't take any ibuprofen or other platelet-killer drugs.    

I think I would fail as a blogger if I didn't wax somewhat sentimental on Thanksgiving Eve.  I do indeed have tons to be thankful for, first of all that the cancer was caught in the act and not after the crime.  I have a fantastic husband and the absolute best daughters in the world.  And have you met my parents?  Or my brother or sisters?  Or the rest of my family?  Not to mention my friends, who bring talents and laughter from around the globe right into my life.  I have an enviable collection of loved ones, and I am thankful for all of you.  I am sending you electronic, germ-free hugs right now.  I love you.  

Speaking of loved ones, my siblings are converging on my living room tonight to eat pizza and watch Planes, Trains, and Automobiles.  Might be the first night in a week that I stay up past 9:30, so look out!

Long overdue Poke tally:

"port"  4

left arm  4

right arm 3

tummy  2

left breast  1

superior vena cava 1

  

Hardest.Weekend.Ever.

I love weddings.  I especially love weddings with a great band and a big dance floor, as my dad and Barbara had at their wedding this past weekend.  Ordinarily I am the ideal wedding guest, populating the dance floor so that you don't have to.  I was not myself at this wedding, however.  I sat, picked at my food, and turned away hugs.  I know!  But I'm so grateful that I was there, because it really was beautiful, and not many kids get to see their dad get married.  He looked so happy!

Instead of moaning about all of the ways I felt like shit this weekend, let's talk about all of the people who made it possible for me to even attend my dad's wedding.  Like my stoic husband, Ian, who hauled me and the kids to so many events.  And my amazing mother-in-law who swooped up the kids after the ceremony so that Ian and I could get a good night's sleep.  And my sister Hil who loaned me an outfit.  And everyone who was patient with us as we were late to pretty much everything.

A lot of people have been telling me that I look or seem like I'm doing better than I was the first time.  That's super, but I can't say that I agree.  No surgery this time, so that's good.  The fatigue is equal this time, if not greater after a weekend of not enough rest.  The nausea and other digestive tract issues are less so far, but now is when they picked up steam previously so I think it's too early to say.  The brain fog is slightly less.  Sounds like I could be better than the first time, but enter the new issues of wedding stress, holiday stress, and family stress, and the result is a yucky mopey tired Heather.

Let's find a positive note to end this on, shall we?  My sister-in-law and her family are here for the week from Illinois, and her kids are the cutest!  There should be lots of cousin fun going on in our house, which will be happy.  Also, Ian and I shaved our heads, and we're a pretty cute bald couple.  I'll post some pics when I'm feeling more photogenic.              

Again

Yesterday's chemotherapy was the anti-cancer trifecta.  I spent far too much energy on Monday and Tuesday (during which I worked 8 hours each day, huzzah!) dreading this chemo session.  I tried very hard not to dread it, even as others reminded me that it will be better by not having port surgery on the same day and by not taking Composine (the anti-nausea pill that made my brain muddy/crazy).  Indeed, my fear turned out to be no match for the positive thoughts that surround me, and it was with a cautious smile that I walked with Ian to the cancer center yesterday morning.  Let the side effects resume!

In the interest of troubleshooting my anti-nausea medication, I drummed up a discussion with Dr. Oncologist about the possibility of medicinal marijuana.  I myself am not a smoker, but other cancer patients have sort-of recommended it to me as an excellent appetite stimulant.  I must say that I was rather relieved when Dr. Oncologist was less than enthusiastic about this option, because I don't know how I could have smoked it anyway.  Seemingly as a result of this discussion, she gave me a prescription for a very expensive anti-nausea medicine.  I wasn't trying to get new drugs, I was just wanted her professional opinion on this thing that had been recommended to me.  At any rate, my new anti-nausea drug is the same one that I get in my IV during the hard chemo sessions, and now I have two pills (we paid $50 for the pair, in addition to whatever insurance covered) for today and yesterday.  So far, I am slightly more comfortable than last time, although eating is still the worst part of my day.  But at least I'm not as nauseous in between meals.  Hopefully the improvement holds.

Fatigue.  Yes.  It started rearing its ugly face late this morning, and it is hunkering down for the long haul.  I must say, Dr. Oncologist has the timing of these treatments down to a science.  I was just starting to feel tip-top and on top of the world earlier this week (excepting the dread, of course); I guess that means it's time to kill some more cancer cells.  And we ARE killing cancer cells.  My left (cancerous) breast is getting softer and less swollen every day, although there is still a focal point of firmness.  Dr. Oncologist says this may be a bit of scar tissue from the recent biopsy, but I know that this has always been the focal point of hardness and so I will continue to beam your cancer-fighting positive thoughts directly to that spot.

I suppose that I'm biased as a microbiologist, but if I were a doctor I think I would prefer to be an infectious disease doctor rather than a cancer doctor.  When an infectious disease doctor administers a drug, it should help the patient feel better.  When a cancer doctor administers a drug, it makes the patient feel like ass.  I know that in both scenarios, either drug will ultimately lead to the improvement of the patient's health, but I don't think I could stomach the induced suffering that comes with being a cancer doctor.  This thought experiment has led me to appreciate Dr. Oncologist even more.  She is a brave soul.

Picking up where the leaves left off

Residents of the Midwest know that the last of the autumn leaves have been whipped off the trees this past week.  Seemingly commiserate with the dropping leaves, my hair too has begun to fall.  Fortunately, I am not one of those whose hair is coming out in "clumps"; instead, 5-10 strands come out every time I run my fingers through it.  Intriguingly, none of the hairs have roots.  I suppose this makes sense, that the root was killed by chemotherapy and so the rootless hair falls out, but the result is striking nonetheless.  So far the hair loss is not really bothering me, probably because hair prevails on my head.  I'm sure after a few days, after the remaining wisps of hair have lost all familiarity, the hair-loss adventure will grow wearisome.  

A day in the life

Today's post is a photo narrative of a chemotherapy day, such as yesterday.  Please click here to see all of the pictures and captions.  Below are two highlights.

As promised, the port.  In the album, there are "action" shots of the port as it was used yesterday.  

Yea, I have a problem with setting the date on my camera.  Below I am receiving chemotherapy in a private room.  Yesterday I knitted a scarf for Azalea (Holly, I'll work on your blanket next time).  More pics and details of the whole process can be viewed here.  

And look below for how my white blood cells have rebounded from the first round of yucky chemotherapy (2 weeks ago yesterday)!  Thank you, Neulasta!

In other news, I am feeling good.  I have two new side effects of chemotherapy that are, shall we say, opportunistic infections, so now I have two new prescriptions for those.  My aunt bought me a pill box, which is really wonderful, but it's slightly horrifying that I need a pill box.  The previous side effects of brain and digestive tract fog have subsided. I still have a bit of fatigue, but is so mild that it is impossible to distinguish cancer fatigue from living-with-two-small-children fatigue and time-change fatigue.  Today, for example, the fatigue really only hit me after I gave my 3-year-old a piggy-back ride for six blocks.  But it is awfully convenient to blame the chemo.  

Bonus: a graph!

I rocked it this weekend and was pretty much my old self.  Side effects have all but disappeared.  The only reminders that I have cancer came from our refrigerator (which is bursting with food-filled tupperware, thank you everyone), my port (curses!), and my hair cut (not for long!).  I'm going to try to work a normal week, except of course for chemo day itself (Wednesday).

Today I finally went through all of my piles of cancer crud, and one of the things I found were the data from my blood work.  I am missing data from the day of my surgery, but you can count on me to ask for it at my next visit.  That data point is important because it was taken right before chemo started.  But even with the mere two data points that I have, you can see what can only be the effect of chemotherapy on my neutrophils:

 Ian is teasing me for graphing this, but I can't help it and it only took a few minutes.  Along the x-axis are different types of white blood cells, and the y-axis is the absolute cell count.  The blue bars are my counts from 10/20 ("you have cancer" day), and the red bars are from this past Wednesday (2-weeks later).  It will be exciting to watch the counts as my treatment progresses!  (Nerd salute!)

Please note that I've added a feature at the bottom of the page, which is a list of the books I've read since the diagnosis.  Not that you'll want to follow along, but it might be interesting to see if a theme develops that particularly relates to my present situation.  These first two books couldn't be more different, but a survivor theme is definitely present.

Lurking fatigue

Today I learned that I have moved into a new category of fatigue.  I learned that for the past week I was feeling a type of fatigue that was evident even when I was doing nothing:  obvious fatigue, bone-crushing fatigue.  This is in contrast to my new fatigue, which I am going to dub lurking fatigue.  This type of fatigue allows me to wake up and enforce my optimism, but slaps me down shortly after noon.  It's not so bad, this lurking fatigue, but I will need to set the bar a little bit lower for myself than I did for today.

I went to work for four hours, and by the end my body had backtracked to Tuesday.  I rested and slept for most of the afternoon, but I have still not recovered to this morning's potential.  Time to go sleep, and I'll try to better pace myself (i.e. be more realistic about the new me) tomorrow.
      

Hey, that wasn't so bad

I'll start by reminding you of my chemotherapy program, and for the first time I have enough energy to get off my butt and look up the names of the drugs:  *week 1, Taxotere, Carboplain, and Herceptin; week 2, Herceptin; week 3, Herceptin*; repeat between * six times, for total of 18 weeks.  Today was the week 2 treatment, and the only side-effect preventers that I was given were 2 tylenols and 1 benadryl by mouth.  That's a good sign right there, in contrast to last week when I was given an hour's worth of side-effect preventers by IV.  I am delighted to report that I don't think I am feeling any side effects of today's treatment.  I think I am still feeling the residuals from last week (a bit of digestive fog and a bit of fatigue hanging on), but *I am better than yesterday*; and I hope to repeat between * until the next big dose.

It has come to my attention that some of you are confused about the mechanics of my port.  All I have to say to that is, exactly.  When the surgical evidence has dissipated, I promise to do a port photo-shoot for you and launch a port-renaming contest.

I did indeed go to work for two hours yesterday.  It was glorious to be surrounded by my colleagues and friends, most of whom I hadn't seen since my catapult into cancer less than two weeks ago.  I also spoke with my boss about how to balance work, life, and cancer.  He is so kind and wonderful, and assured me that he will work with me however is needed.  The two big things are 1) signing up for the leave-transfer program, which will allow folks with extra vacation time to donate that time to me because I will run out of my own vacation time very soon (this mechanism of leave-transfer could possibly keep me off of disability for awhile), and 2) working around my health in the event that I get an interview.  That's right, I said interview.  In mid-October I applied for a full-time scientist position within my current unit at the USDA, a position I really really really want and am really really really qualified for.  I'm very hopeful that I'll get an interview, but that interview will likely be sometime around Thanksgiving, and I will obviously still have cancer and still be undergoing treatment.  We talked about the scenario where I get an interview, and he said he'd be willing to work with me to interview on a "good" day.  So, a big sigh of relief on the work front, which translates to a huge sigh of relief on the paycheck front.  Now I just need to figure out how to actually get work done and prepare for the interview, but I'm feeling so much improved from yesterday that I have high hopes for productivity next week.  By next week I mean tomorrow, because Wednesday is the new Monday in my world.  

I'll leave you with an anecdote about my surgeon.  My husband Ian saw him in the hospital today, and where Dr. Surgeon previously had a head full of hair, he now has none.  Yep.  He shaved his head.  Ian commented on it and the surgeon said that he shaved his head for ME, and that it's the best good-luck charm you can give to someone.  Ian was already planning to shave his head when my hair actually falls out, so that I don't have to be the only bald person in my dad's wedding pictures (yikes!) later this month.  I suppose this is starting to sound like I'm lobbying for you all to shave your heads, but I'm not.  The purpose of this anecdote is to suggest that you send some of your positive thoughts and prayers to yourselves, including Ian and Dr. Surgeon, for being the unique and incredible network of people loving and supporting me.  I couldn't do this without you!                    

Poke tally:

left arm  4

right arm 3

"port"  2

left breast  1

superior vena cava 1

tummy  1    

Side-effect roulette

I had my first nearly sleepless night last night.  Turns out that the anti-nausea drug that was making me foggy was also helping me sleep.  Now my head is happily perched on the hillside, overlooking the fog in the river valley that is my digestive tract.  All night I was in total sphincter failure, from heartburn on down.  I took my non-brain-fog-inducing anti-nausea medicine at 11:00, ate some frozen yogurt at 12:15 (microbes unite!), but neither of these helped.  We don't have any heartburn meds in the house, but that will be corrected before sundown today.  All of what I'm calling river valley fog was included in chemo 101, but I'm guessing that the reason it hadn't surfaced before was because one of the side effects of the anti-nausea medicine was constipation; therefore, the two opposing forces cancelled each other out.  Now I seem to have traded the brain fog for digestive tract fog.  Boo!  

This makes me wonder what effect chemotherapy is having on my gut microbiota (gut microbiota:  all of the microbes that live in a digestive tract.  Fun fact: there are more bacterial cells associated with your body than human cells!)  Is anyone studying this?  Are my gut microbes going crazy because they too are affected by the chemotherapeutics, or are they going crazy because my immune system is no longer keeping tabs on them, or are they not going crazy at all?  Would probiotics help me to feel better, sooner?  I can think of at least 10 of you who have already launched Pubmed to answer these questions for me.  I can think of at least five of you with whom I would like to collaborate on a grant to ask, and then answer, these questions.    
       

Let's keep the science rolling, shall we?  Thanks to my friend Dr. Jason for explaining what neulasta (aka bone cuddle) is in his comment:  "neulasta is a colony stimulating factor- it stimulates precursor white blood cells (granulocytes) to grow, divide and mature more quickly to help your bone marrow keep up production during chemo. It is also covalently bound to polyethylene glycol so it hangs around in your body longer."  My delightful oncologist elaborated on this yesterday and said that neutrophils (a type of white blood cell) are specifically upregulated.  Neutrophils are your body's first defense against infection (shout out to Rose and her neutrophil-studying splendor).  And this is when it dawned on me how neulasta got its name:  Neulasta, helping your NEUtrophils LASTA bit longer.  Oh yes I did.


     

I am not a (known) mutant

Here's how awesome my doctor is:  she called me today at 1:40 and asked if I could come it, just for kicks.  It's 2:40 and I'm already home.  She is so awesome.

As you may recall, my blood was sent away for some genetic testing.  Specifically, we wanted to sequence two genes (BRCA1 and BRCA2) that are commonly mutated in certain types of breast cancer.  The outcome doesn't affect me too much, but it's great news for my sisters and daughters:  I am not a mutant!  My first question was does this mean that I get to keep the right one?  She said that we'll make that decision based on further tests after chemotherapy.  But at least it's up in the air!  It would be a goner for sure if I was indeed a mutant.  Funny how I still feel attached to it, even after the left one has so viciously sabotaged my life.

More good news:  the left breast is responding to the chemotherapy.  It is already less inflamed.  Let's hope it keeps responding.

We also discussed the muddy-brain side effect.  She said that one of my anti-nausea drugs could be the culprit, so I am done messing with that guy.  In addition, she simply nodded knowingly and told me to make sure I keep using my brain.  A friend of mine who went through chemo last spring told me the same thing.  Good advice, but this brain won't go dormant without a mighty fight anyway.

Today is the best I've felt since chemotherapy last Wednesday.  I've been on two (short) walks, engaged with my kids, and executed two (small) projects.  I'm going to go into work for a little bit tomorrow, although I will ask my brother for a ride because I don't feel good enough to operate machinery.  But I can probably operate Excel, huzzah!

Instead of viewing it as 18 monstrous weeks of chemo, let's view it as 6 difficult, side-effect-riddled doses.  So I'm already 1/6th of the way there, which is practically halfway!  Go team!

Divergent

In my scientist life, I study genes that make bacteria resistant to antibiotics.  I am especially interested in how these genes evolve.  To guess at how they evolved, I draw trees, much like a family tree, except with genes.  When two genes are found to be related, they are often said to have diverged from their common ancestor.  Well, it is false to say that I am evolving, but right now I can't help but see my life as analogous to one of these trees.  The difference is that on my science trees, both branches exist.  On my life tree, the branch I'm on is the only branch that exists, so I guess there's no point lamenting over the pre-cancer branch (a tempting endeavor, I assure you).  Nonetheless, I can't shake the notion of how far my life path has diverged from what it was merely two weeks ago.  I don't feel at all like myself, and yet this is my new self.  Tasks such as walking around the block are difficult, and I can't count on myself to make coherent conversation.  And let's not forget about the port.  I am deeply divergent.   

I need to remember that it won't always be this way.  Hopefully tomorrow will be better.  And in looking past tomorrow, previous divergences have always led to the great life I have now.  Why should a little cancer be any different?       

In other news, huge shout-out to Ashley for the fantastic hair cut today!  She cut it here in the kitchen, and it is adorably short.  I wanted it short before it falls out, in the off chance that it is less traumatic that way.  (Photos of the Cancer Cut are linked at the right.)  Second shout out to Sandra for bringing the scarves that I will rock so hard.  I've already started the count-down for the return of my long hair, but I am grateful for the help to look presentable in the meantime.  Maybe without the ponytail I will look like I have a PhD.    

Turtle

I got up and had breakfast with my ladies this morning.  Every movement made me feel like a 100-year-old sea turtle laboring across the sand.  Time to return to the sea.

Bone cuddle

First of all, vicoDID but vicoWON'T.  It made me nauseous, woozy, cry, and my wound still hurt.  This morning I took extra-strength tylenol, which is my momentary hero.

Although I had trouble falling asleep last night, I had no trouble sleeping.  I was warned that one of the drugs (dexamethasone, given prior to chemo to prevent nausea) would keep me awake, but either it didn't or it hasn't.  I was almost disappointed because I already had the title for the 3 am blog post, but there's always a next time.  

This morning I had to go in for a shot of nulasta (again, I am ignorant of the spelling).  My mind is too fuzzy, so I forgot to ask how it works.  But I know that it's purpose is to help my white-blood-cell-generating cells to recover from yesterday's chemotherapy, and these cells reside in my bone marrow; therefore I have been thinking of this nulasta as a big ol' molecular hug for my bone marrow.  

This begs for a brief chemotherapy lesson, although I am still not going to get up to read from the paper that contains the names of my drugs:


chemo drug 1:  Specific to a receptor on my type of cancer.  Should just go straight to the cancer culprits and somehow take 'em out.  I would like to know more about this on a molecular level so that I can explain it to you.  I will put this on my question list for my AMAZING oncologist.  I have not given her enough props yet, but let the props begin here and never end.  She is a real-life rockstar.  And props to all of the research scientists out there discovering new chemotherapeutics; you too are rockstars.  Anyway, because this drug is brilliantly specific, there are few side effects to my other body parts.  Nice.  This is the drug that will enter my port weekly.  


chemo drugs 2 & 3:  General to all fast-growing cells.  This includes cancer cells (yay!), but also other fast-growing cells in a body, such as hair folicles and blood-cell-generating cells (boo!).  This is why my hair will fall out and why my immune system will waffle between weakened and obliterated (mmmmm...waffles).  These drugs will enter my port once every three weeks, for 6 cycles.  So one dose down, only 5 to go.  Huzzah!


And now my brain is spent, which is probably evident despite my best efforts to hide it.  Fuzzy fuzzy fuzzy.       

Poke tally:

left breast  1

left arm  4

right arm 3

superior vena cava 1

"port"  1
tummy  1