I've still got this

Alright.  I've finally got my hbomb back.  Sorry if I scared any of you, but thank you for all of the extra support I've received.  Some of your words and gestures were deeply touching, such as the books from Nebraska, the email from Wisconsin, and the bead delivery.  I love you all.  I'm sure that they are the direct cause of my improved mood.

A few other things have helped me to feel better.  1) Last night I escaped from my life by going to the cinema.  I haven't been to see a non-animated movie in an age.  My friend S was my buddy, and I inadvertently tested her friendship by dragging her to a Woody Allen movie.  I'm so out of the pop culture loop that I didn't know it was written by Woody Allen!  I just saw that there was a Colin Firth movie playing (I love Colin Firth) and I hastily dragged us to it without doing further research.  This is pure neglect on my part, considering the various modern technologies I could have employed to spare us from this tragedy.  In all seriousness, Colin Firth was excellent and the story was unique, so we just rolled our eyes at the pretentious scenes while we happily munched on our popcorn.

2)  This afternoon I hosted an ice cream social at work.  An undergraduate student who has worked in the lab all summer is returning to her institution next week, so someone suggested an ice cream party to celebrate.  I brought the ice cream and everyone brought a topping to share.  The result:  a lovely half-hour with my awesome co-workers eating the fanciest sundaes imaginable.  Sure we had hot fudge and strawberries, but would you believe that someone made homemade candied ginger?  And homemade cinnamon toast croutons?  I don't think any of us stopped at one sundae.  You'd be in a better mood, too, if you had sundaes like these.

3)  I took my daughters to the pool tonight.  I put my hat on Eleanor so that I could stand under the waterfall and let the water massage my shoulders.  I tried to get her to hold my sunglasses, too, but she couldn't get them to stay on her face and so she moved to set them down...in the water.  I decided it was best to hold them outside the waterfall myself.  Also, watching my girls hold hands as they ascended the steps to the waterslide was pure bliss.  

I've rapidly progressed to the point where I'm so ready to be rid of this toxic breast it's not even funny.  I don't know how I can possibly wait until September 10th.  Oh yea, I suppose I'll be busy recovering from tomorrow because...

...IT'S MY LAST HARD CHEMOTHERAPY!  Woo hoo!  I'm oddly excited, like almost as excited as I feel before a trip or a show or something.  I've already got the coffee pot filled with water and decaf grounds, set to brew at 7:02.  My intentional choice of the odd time of 7:02 makes me even happier.

I'm pretty sure that I had more things to say, but my friend F just sent me this awesome mix via Spotify.  Now I'm distracted by these fantastic tracks.  Here's one for you.

What a ride

Before I forget, I have two more things to say about the colonoscopy prep.  1)  It dehydrates you.  This should be intuitive, since you are ingesting ungodly amounts of salts (laxative), but it's not because you are also consuming an ungodly amount of hydrating materials (liquid diet).  So try to drink EXTRA liquids despite the bloating and nausea and being just plain sick of liquids.  2)  Laxative-induced things do not stop coming out of your colon prior to the procedure.  I was feeling a bit embarrassed as I prepared to head to the clinic, stopping in the bathroom one last time at home in an attempt to evacuate things for the last time.  I wasted no time telling the nurse about this issue, in case the procedure would have to be rescheduled, but she said that this non-stoppage is the case with everyone.  The doctor will continue to suck out material during the procedure.

I would have been more comfortable, both physically and mentally, if I had known these two tidbits going in.  I hope they help you out someday.

On to the procedure itself.  The nurse insisted going in that I would be slightly awake but that I wouldn't remember anything.  Well, I have news for you, nurse:  if I'm awake, then I'm remembering.  Maybe not all of it, maybe not perfectly, but I'm remembering.  This is a well-trained steel trap up here (except when recalling movies--then it's an aluminum sieve).  And so it is with great delight that I report that I was awake during the whole procedure, and with a perfect view of the monitor!  I got to watch the camera go in, sucking up green slime along the way.  I got to feel the camera bending around the primary curves of my colon.  It tickled.  I heard the doctor ask about giving me more drugs (either percocet or fentanyl), but the nurse commented on my cooing, "Why?  It sounds like she's on a roller coaster!"  Dr. Gastroenterologist got the camera up to the proximal end of my colon very quickly, but he was slower on the way out.  There were several pauses to examine and photograph areas, followed by very swift movement to the next spot.  Then it was over, and without any pain or discomfort from the scope itself.  The nurse wheeled me to the recovery room and told me that I couldn't have anything to drink until I passed gas.  They pump a lot of air in there during the procedure so that things stay open.  So I rolled around until one enormous volume of air moved from within to without.  Then I got grape juice and hot tea.  My delightful mother-in-law helped me to get dressed while we waited for Dr. G.  In his street clothes, he came and gave us the report that there was absolutely nothing abnormal in my colon.  Huzzah!  I asked him whether there could be something abnormal on the outside of my colon that his examination would not have seen.  He said not likely.  Then I asked him what would happen if this same area shows increased metabolic activity on my next PET scan.  He said he wasn't sure, but I wouldn't be seeing him again.  He probably didn't use words quite so harsh, but this is the essence of what he said.  Then he backed out of the room as fast as he could.

Clearly he was banking on the fact that I wouldn't remember any of this.

Also, he gave me a sheet of paper containing 4 pictures of my colon.  Huzzah!  However, these were all stock positions of typical colon landmarks.  They were not photos of the region shown to be questionable on the PET scan.  What gives?  I could have told you that there was nothing wrong with my colon landmarks.  I want a picture of the questionable site.  Not seeing for myself the appearance of questionable sites is what got me into this mess in the first place (recall original ultrasounds of the left breast).

Needless to say, I was not very pleased with Dr. G.  But this shouldn't be surprising, because I'm rarely impressed with 1) procedural doctors (doctors who perform and bill by procedures), and 2) doctors I only meet once.

OH!  The nail in the coffin for Dr. G actually happened before any of these disappointments, right after I met him, right before he injected the drugs into my system.  I was lying on the procedure table, getting-to-know him, sharing the fact that I'm a microbiologist currently studying the microbiota of pigs.  I imagined talking a moment of shop with him, expressing our mutual affection for those amazing bacteria within.  Do you know what he said?  I was so upset that I don't remember it word for word, but here's the important part of the quote:  "...nematodes..."  NEMATODES!  Nematodes are WORMS, not bacteria!!!!  This calls for a survey of my non-scientist readers:  do you know that nematodes are not bacteria?  I don't care if you know nothing about either organism, but I'm pretty sure that you know that they are less related to each other than we are to primates.  Well, maybe you didn't know that analogy in particular, but now you do.

And finally, on to issues of recovery.  I am not feeling tip top today.  I worked almost a whole day, but came home early due to what I'm calling seasickness (nausea and dizziness) in addition to fatigue and tingly hands.  I called Dr. G's office but guess what?  Neither he nor his nurses work on Wed. afternoons, the day after their procedure day (shake head here).  I spoke with the gastroenterological nurse on call, and she told me to go to the ER because it sounded neurological.  Sigh.  So I hung up and called Dr. Oncologist.  She said to sleep on it and call her in the morning if it's not better.

In the interim I have come up with my own hypothesis:  low iron/malnourished.  This could lead to decreased hemoglobin in my blood, decreasing the oxygen to my brain and extremities (i.e. my phenotypes).  This would also make sense given the fact that I didn't eat for over 30 hours and my female parts are doing female things (i.e. my monthly bloodletting).  So I ate lots of green vegetables for dinner and I'll take my vitamin in the morning.  Maybe Dr. O will have other suggestions when I present this hypothesis.

Longest post EVER to say that my colon is FINE.  I will celebrate in due course, when I'm feeling better.  What an EXPERIENCE.

And while I was writing this, one of my favorite songs in the universe came on Pandora.  I hadn't heard it in ages.  So here it is for you.  "Into the mystic" by Van Morrison.  Turn up your bass.

                

I'm not crying

What is with me lately?  It might be my ovaries awakening from my 55-year-old chemo body into my renewed 30-year-old body, but I'm a tad bit sensitive.  However, my sensitivity doesn't feel hormonal, so I'm trying to pinpoint another cause.  The stress of a "normal" life while still having skin pain, arm pain, boyish short hair, etc. is certainly a culprit.  And I think it's highly likely that I have not yet processed this whole cancer thing yet.

For example, the other night I was writing some notes in my Wonder Woman notebook and I had to flip back to reference a previous page.  I was intrigued by what I found on that previous page, and I just kept flipping back and back and back until the beginning on the notebook, which started just after the cancer diagnosis.  The page that got me and jerked out some tears was dated Oct. 27, 2010.  It is almost entirely in my brother's handwriting--the cause of my undoing.  He detailed some of my goings-on:

10:30 pm  lethargic, nervous, drowsy.  Going to try to sleep.  Tummy hurts.
9:30 am 1 prochlor, 1 vitamin, 2 tylenol, 1 vitamin D
12:47 pm 1 ondansetron, 2 tylenol
6:30 pm  1 ondansetron, 2 tylenol
etc.

On the next page are some questions for Dr. Oncologist, in my own handwriting.  One question is, "On major fatigue days, I nap twice and can't do much of anything.  Is that okay?"  Doesn't that just make you want to reach into the past and give me a cuddle?  It kind of breaks my heart.  I had to stop reading.  I kind of can't believe I experienced that.  And the rest of it, too.  

The other example of my sensitivity-slash-need to process the whole cancer thing happened at work.  Before my diagnosis, my boss had planned to host a seminar series in June 2011.  So in January, between chemotherapies, I invited Heidi Goodrich-Blair.  She is an outstanding scientist in the field of microbial interactions and symbioses.  In June she visited, and I was her host.  I packed her schedule with all sorts of exciting meetings with excellent scientists, both at our center and at the university in town.  When the visit was over we embraced, said our thank yous and goodbyes, and I felt like crying.  It was supposed to be this professional, non-emotional work thing, and I felt like crying.  Why?  Because although I had gotten to visit with her, I didn't really get to sit down and talk with her about science?  Because I realized that she represented all of the wonderful people and things and places that were Grad School, and I missed all of them?  Because I realized that cancer had changed me, both professionally and personally, from the person she once knew, and that disappointed me?

The trick to these emotional things, I think, is that I am getting so deeply engaged with my normal life that I am not taking the time to Release these emotional things.  I eagerly bounce from work to kids to friends to family to chores with scarcely a moment for myself.  And I'm not mad at myself, because I think this is a natural response to not doing jack___ for 7-ish months.  The current lifestyle, however, urges me to deny the tears.

"For your information there's an inflammation in my tear gland."  (If this is your first introduction to the Flight of the Conchords I highly, highly recommend that you check 'em out.  Hilarious.)

But seriously, now I think it's time to work some Heather time into the schedule.  To just go sit and watch a sunset somewhere, savoring every dip of that orange globe towards the endless midwestern horizon.

Where should I go, now that my dad no longer lives in the best sunset-viewing house in the universe?  I'm taking suggestions.                    

Cancer treatment didn't kill me

This will be brief because I am so, so tired.  No better way to keep myself brief than a numbered list.

1.  Sinuses.  Dr. Oncologist was on the same fence that I was on in yesterday's post about my inconclusive symptoms, so she sent me to Dr. Ear Nose and Throat.  His opinion was that my sinuses are not acute enough for surgery and we haven't tried everything in his non-surgical arsenal.  The antibiotics will be ceased and I am to shoot some steroids (Nasonex) up my nose every day, in addition to maintaining the sinus washes.  The goal of the 'roids is to open things up and let the sinuses drain on their own.  I predict another sinus UFO in my future.  I am very happy about this outcome.  I did not want surgery.  

2.  Heart.  I had an echo (ultrasound) of my heart today, and I suppose you could call it routine.  Dr. Oncologist wanted to check on my heart after chemotherapy, but she had to wait for all of my surgical and radiological wounds to heal.  My heart is in excellent condition.  This is outstanding news.  This in addition to all of the other ways I'm healing causes me to tentatively conclude that cancer treatment did not kill me.  This may not be news to you, but I am glad to finally have enough evidence to believe it for myself.  

3.  Lung (left).  What I don't think I have told you yet is that I am experiencing some shortness of breath in my left lung.  I biked to work last Friday and got a little unnerved when I couldn't catch my breath upon arrival.  Also, I run out of air even when I talk too much (as I did on Monday when training a new person in the lab).  Dr. Radiological Oncologist warned me that this decreased lung capacity may occur between 1 and 4 months after radiation.   This is because a sliver of my lung was in the radiation field and could not be avoided.  He said that this lung tightness usually resolves itself with time (although I am unclear if this is because the rest of my lung compensates or if the wounded lung heals).  Regardless, in light of my ongoing sinus woes Dr. Oncologist wanted a chest x-ray to rule out a lung infection.  I do not have these results yet.  Again, the left lung tightness is to be expected, and there is probably nothing more wrong with me.  Maybe I should sharpen my former tuba-playing skillz and exercise the lung with some John Philip Sousa.  

(Stars and Stripes Forever, performed by NY philharmonic.  Happy Independence Day, everyone!)

4.  In summary, it was a very busy day.  I was at the clinic for 6 hours and went from Echo to blood draw to Dr. O to chemotherapy to Dr. ENT to chest x-ray.  Whew.  No wonder I'm exhausted.  

5.  Now I am looking ahead to my first vacation since cancer started!  Woo-hoo!  This weekend I am driving the girls to scenic Columbia, MO, to visit my dear friend Martha and her triplets.  Should be epic in terms of cuteness and messiness.  Ian will not be joining us because I surprised him with a plane ticket to Seattle to visit my larger-than-life brother.  Tee-hee!  He deserves a vacation even more than I do.  Safe travels and safe celebrating to all of you!             

Audience participation

I have put a lot of brain power into what to do with this blog as my cancer treatment decreases in intensity.  Of course I plan to leave it on the world wide web, just in case it could help someone else who enters into my situation.  With them in mind, I plan to add some pages about me and about inflammatory breast cancer.  But this still doesn't address the very essence of blogging:  short and frequent blurbs by the author.  Right now the future of blurbing on Carnations is unclear, but I don't yet feel like throwing in the towel.  Maybe my posts will become less frequent, or less regarding cancer, but it seems that I will always find something to say.  Lately the scientific community is pestering scientists to create science blogs.  A science blog sounds like a tremendous amount of work, like writing a mini-review article every week, but perhaps with practice I could get into that.  We all know how much I love science.

  

That video could use a few more microbes, but I digress.  Until I evolve as a blogger, I have an idea to keep this cancer blog afloat.  My friend S. of Ames has a lovely biking blog on which she occasionally posts themed pieces by guests.  I'm thinking that my blog would greatly benefit from guest posts, too.  There is much more to cancer treatment than merely the experience of the patient (see my Lines and overlapping circles post for a visual of some of the various perspectives).  I'd like to hear about your experience, and I'd like to share your experience with others.

Because this blog has been entirely selfish thus far, let's keep it that way:  this assignment is aimed at those of you who know me in any way at any level (personally, electronically, acquaintance-ally, etc.), and I suggest the topic should be how you've been affected by my cancer (personally, spiritually, lifestyle-ally, etc.).  I don't mean this in an egotistical way, although it sure sounds that way.  My goal is indeed for the sake of the blog, because I think it's important to maintain continuity within the theme (Heather and breast cancer) at this juncture.  But I promise I'm not looking for "Heather rocks, cancer sucks."  That's been your mantra in the comments sections for seven months, and for that I am grateful.  I'm hoping and guessing that you have much more to say than that.  If there are readers who don't know me but who feel inspired to write, by all means do so, as I'd love to hear from you.  Let's face it, Zora Neale Hurston said it best when she said, "There is no agony like bearing an untold story inside you."         

The only rule is No Swearing, because kids could benefit from this, too.  The art form (i.e. poetry, essay, drawing, etc.) is totally up to you.  Regarding length, do what works for you, although perhaps 750 words is an appropriate maximum for this blog.  As Ms. Cotton would say, in a voice unexpectedly sultry for someone with glasses of a certain thickness and who teaches 10th graders, "A piece of writing should be like a skirt:  long enough to cover the subject but short enough to be interesting."

I urge you not to be intimidated by any lack of self-confidence in your own writing prowess.  I am willing to help you revise your piece, to find you a kind (and possibly handsome) editor, or to post it raw and unadulterated by me.  You decide.  Also, you decide your level of anonymity ("Written by a close friend", for example).     

Please submit your piece(s) to either my personal email or to my new public email, <30carnations@gmail.com>.  No deadline ever, although I'd appreciate if someone were to be inspired soon, to get the ball rolling.  Also, I might end the assignment if it's just not working for all of us.    

I am grateful that you're even considering participating.  This should be good.  

No more zaps!

I suppose I've kept you waiting long enough regarding the question, am I done with radiation?  The short answer is YES, and the reason for my delinquency is that I've been doing so very much LIVING that I haven't taken the time to post.  Yes, posting is not about having the time, but taking the time.

I was a bundle of nerves when I saw Dr. Radiation Oncologist on Tuesday, fully expecting him to scoff at my pinkness and sentence me to another week of radiation in order to achieve the ambiguous yet desired redness.  (My chest wall has survived remarkably well and looks like it has been to Puerto Vallarta rather than to Radiation Oncology...I wish).  Instead, he said, "you're done".  In my confusion I found myself nearly arguing for more radiation, saying things like, "but my skin was never very red!"  It turns out that my misconception laid in the purpose of the bonus radiation:  I thought that the bonus radiation doses were to stimulate redness, but the bonus radiation doses were merely a radiation boost regardless of redness.  Yes, redness was the goal for the original three weeks, and when that wasn't achieved the boosts were prescribed with no more redness in mind.  Said another way, the redness was his barometer for how effective the original radiation therapy was, and when the redness didn't cross his threshold, he prescribed the 2 days of boosts to ensure the efficacy of the radiation course, regardless of redness.  Confusing, I know, but hopefully this makes sense and anyway, I'm DONE!

Herceptin chemo yesterday was delightfully uneventful.  The biggest thing is that we scheduled my next PET scan for June 6th, and Dr. Oncologist will report the results to me on my June 8th herceptin day.  The purpose of this PET scan is to look for metastatic cancer.  The inflammatory breast cancer is super duper ultra gone, but my T9 vertebral body was suspicious on my last PET scan in March.  Pesky spine bone that doesn't hurt or anything!  The biopsy of said bone was inconclusive, revealing atypical cells but nothing specifically cancer or not cancer (read some of those early March posts if you want a more in-depth review).  So, PET scan in June.  I'm choosing not to worry about it but rather go on riding the happiness wave.  Nothing I can do about it anyway.  

Frank, your celebratory song suggestions were more than excellent, and I am grateful.  I chose, however, to take it as a challenge to come up with an even better one.  I submit to you and your fellow Carnations followers:

It's Oh So Quiet, by Bjork.  Not surprising, since we all know by now that I tend to go for the jazzy instrumentals.  And another selection (Tchakovsky's Chinese Dance, from The Nutcracker) that sounds like spring despite its perpetual winter holiday employment and includes a rather goofy dance (this one's for you, Hol):  

    

Believe in things you don't understand

As I was hoping last week, I have indeed adjusted to this crazy radiation schedule.  It is not nearly as exhausting as it was last week, although I find it hard to believe that it's only been one week.  The electron doses started on Monday and just take an extra few minutes.  Well, the electron dose itself takes only ~20 seconds, but it takes a minute or two for the technicians to get things set up.  My skin is starting to turn a little bit pink, as predicted.  Still not red.  Still not sore.  Huzzah!

In other health-related news, I have 100% range of motion in my left arm.  It is not pain-free, in neither the nerves nor the muscles, so I will continue physical therapy for a bit.  I do my exercises every day, and I can feel improvement every day.  I've started to forget that I used to bump into a breast when I reached across my body.  I've even grown accustomed to the burning nerve pain in my arm.  It's sensitive, but not crippling.  Again, huzzah!

While I was getting zapped today, I was thinking about all of the particles that were poking through my skin.  I couldn't feel these particles, but I nonetheless thought of my poke tally.  Was there a way to calculate how many particles (photons or electrons) were "poking" me in a single dose of radiation?  So that I could start a particle poke tally?  I asked this question of one of the fabulous technicians, and she introduced me to the physicist.  He seemed delighted to talk shop with someone and explained that the radiation machine is calibrated by measuring how it ionizes a known amount of air.  This is then converted mathematically into the ionization of an amount of liquid, liquid being of interest because a human body is ~60% liquid (today mine is ~70% liquid due to the incredible amount of snot I'm producing; thank you sweet Eleanor for giving me your cold).  This is further converted to the unit Joules per gram, and he said from here we could calculate exactly how many Joules-per-gram of radiation I am receiving in a single dose.  It sounded like it would take a fair bit of effort on his part, and because this is an unnecessary exercise I said no thank you.  He further explained that the machine is tested every morning to see that it functions within good parameters, and if it ever falls out of those parameters he re-calibrates it with the air ionization thing.  He also said that he belongs to some Houston-based national radiation calibration organization and follows their calibration protocol annually.  I came away from the discussion with something much better than a particle poke tally:  confidence in the machine and the people running it.  But part of me still wants to know something quantitative about this radiation rather than the empirical "20 seconds of photons here, 10 seconds of photons there, and 20 seconds of electrons there."  It's a little hard for me to grasp, but I guess I'm just biased towards whole atoms.    

It has been a cold, rainy, sleety day here today.  To combat the cooped-up feeling, the girls and I had a disco dance party this evening.  Cinderella even made an appearance:

Pandora radio was our DJ, and one of the songs that popped up was Stevie Wonder's Superstition.  I know I've already posted a Stevie Wonder song, but this one really resonated with my thoughts after the discussion with the physicist today.  Radiation at times feels like it could be superstitious:  I lay there with my arms above my head while a machine waves an over-sized magic wand above my former cancer.  Bibbity bobbity ZAP! and the cancer is gone.  I know it's not superstition, however, and that's why I've found another connection between this song and radiation.  The clavinet riff, which is the song's trademark, sounds like the buzzing noise made by the radiation machine when it is zapping me.  I wish radiation were as funky as Stevie.  Below is the jam-session version of Superstition, performed on Sesame Street.  Smile.      

Roller coaster

It has been quite an emotional weekend, and I'm sure you have been on the emotional roller coaster with me.  The good news is that today is good.  I'm finally listening to myself when I tell myself to chillax.  We don't have enough information to justify a freak-out, although the lack of information only fuels the freak-out for an active and creative mind such as my own.  Today is a government holiday, so although I had been looking forward to going to work I thought that being there alone would be toxic to my positive attitude.  Instead, it's project day:

-Ian and Azalea visited a pre-pre-school (aka daycare) and got both girls on the waiting list for this fall.

-Eleanor and I played with some favorite friends at our house, hosting a water tea party for distinguished guests (example at right)

-We started our garden, planting tomatoes, peppers, cucumbers, basil, and onions from seed.  We will nurture them indoors for several weeks before transplanting them to the real garden.

-We put away laundry

-I am cleaning the clutter from table tops, after I finish this post

-Ian is on a diaper errand

-Later we will go to the library to get some books on tape for our drive tomorrow.  The drive is only 2ish hours but we will likely secure 8+ hours of material because it is too hard to choose just one book.

See?  Plenty of delightful distractions.  Oh, and I have to walk over to the Dr.'s office to pick up my records.  

Just so you all know, tomorrow will likely be an information transfer day, and possibly a procedure scheduling day, but it is unlikely that I will have any procedures tomorrow.  My platelets are super low (56 on Friday), so it will probably be a few days (at least) before anyone wants to biopsy or otherwise cut me.  We just have to wait for my bone marrow to crank out some more platelets.  I'm hoping it doesn't take TOO long, because with this T9 back bone scare I am positively ITCHING to be rid of these breasts.  I feel like I am adhered to two death stars, two timebombs, two leaching toxic waste tanks.  I'm eager to be rid of them and to start radiating the premises.  Funny how a metastasis scare has wiped out any remaining sentimentality I felt towards my breasts.

Speaking of timebombs...here's a live performance of the song Timebomb (by the Old 97's).  It's not the greatest quality, but it was recorded at the Triple Door in Seattle and I have a soft spot for the Triple Door because my brother and I saw a show there in August.  This one's for you, Rose and Valentine, my fellow Rhett Miller and the Old 97's lovers.  I see they are playing in Omaha on March 31st...perhaps there is a road trip in my future.  

The 60th day

Business first by way of an updated poke tally.  I had a bonus port poke and right arm stick with the sinus infection a few weeks ago, and yesterday I had twin left-right arm sticks for the PET scan.  There will be another poke today for the MRI scans and another poke tomorrow to check my platelets (they were dangerously low as of yesterday, but still above the transfusion threshold), but where will the pokes be?  No one knows.

"port"  18

tummy  6

left arm  5

right arm 6

left breast  1

superior vena cava 1

I am slowly climbing out of the chemo fog.  The crumminess lurks, but I can participate in family life in moderation.  I unloaded the dishwasher this morning, and now I am recovering from that exertion.  After a grand sit I will start making lunch, followed by another grand sit.  I need to conserve some energy for my scans this afternoon.  

"Scans" is plural because what was supposed to be just a breast MRI scan is now also a chest scan.  This is because the PET scan did not sufficiently visualize my thoracic spine (fancy words for my back, I think) and so Dr. Oncologist wants more pictures.  I've been told there's nothing to worry about, she just wants a better view.  She is a thorough oncologist, and for that we are grateful.  So let's not worry.

Instead let's ruminate on the fact that today is approximately my 60th day of being sick <insert imaginary balloons and confetti here>.  This is worth celebrating because it means that the worst of the chemotherapy is behind me.  For the record, I can't believe that I have spent 60 days being sick.  It was fast, and also slow.  It was extremely hard, and also painfully simple.  It was a heck of a way to more or less skip winter.

You KNOW I have songs to express my feelings.  There are two.  Click here for the first song, by Norah Jones.  This is the song for the weary yet peaceful me, sitting in a deck chair on a Caribbean beach at dusk.  I close my eyes and breath deeply of the warm salty air.  I feel my children sleeping in a house behind me.  I feel the earth turning beneath me.  I am enveloped in this peace.  

Good try, Norah, but that doesn't quite capture everything I'm feeling right now.  Click here to listen to Carlos Santana's rendition of a different song, a song for the hbomb.  This is the song for the relieved and exuberant me, casting the fatigue and the deck chair into the sea.  The moon is high and I raise my face to it as I passionately dance in the sand.  My untethered hair flies about my face.  Skirt and sand cling to the sweat on my thighs.  I turn the earth with my being. 

That's better.  Thank you, Carlos.        

Ten great things about today

In no particular order:

1.  I am done dripping taxotere and carboplatin into my bloodstream!!!!!!!!  No-mo-hard-chemo!!!
2.  I won the fight with benadryl and stayed awake the whole treatment.  This enabled numbers 3 and 4 below.
3.  I finished Holly's wedding blanket today.  I finished the knitting part over the weekend, but I still had to secure all loose threads, and that is the part that I finished today.  It's a pain-in-the-butt task, but overall it has been a fun project and the product is beautiful.  I will post a picture as soon as we install the software for our new camera.
4.  It was a lovely chemo date with Ian.  He drank a BIG cup of coffee from the hospital coffee shop and was downright bubbly and highly entertaining.  He walked home, midstream, and returned with hot homemade split pea soup for my lunch (thank you Lori or possibly Louise!!!  It was amazing.)  He rubbed my ankles.  Right now I can hear him serenading the girls with Golden Slumbers as they fall asleep.  He is amazing.
5.  We scheduled the PET and MRI scans for the end of next week.  I have my first surgery consult with a breast specialist in Iowa City on the 22nd.  These things make it onto my greatness list because it was such a relief to be healthy enough for the hard chemo today (but only barely...my platelets are 96 and she usually requires them to be 100.  A platelet transfusion is on the table when they hit 10), followed by relief to have the next steps in motion.  No plan for the second quarter yet, and no surgery date, but we're getting there.  Relief.
6.  The sun was out in spite of the ridiculous cold.
7.  I just read in Elisabeth's comment that the crocuses are emerging in NC.  I am so inspired by this news; crocuses are my favorite flower to have in the yard (lilacs are my favorite flower to smell, and carnations and daisies are my favorite cut flowers).  Dar Williams has this beautiful song called February, and although I've always appreciated it as a metaphor for a settled relationship, I just discovered that it works as a metaphor for what Ian and I have gone through this winter with my cancer.  I am thankful for the crocuses, and for Ian.  I'll let you know when the crocuses pop up in our yard.
8.  I am so distracted and moved by that song that I forgot what the other great things are.  Blasted hormones!  Oh yes, Brussels sprouts.  Ian peeled, halved, and washed some Brussels sprouts, then roasted them in the oven with olive oil, salt, and pepper.  Thankfully my appetite has not yet departed, leaving me free to discover the splendors of this much feared vegetable.  It was so delicious:  not at all bitter, mildly sweet, marvelous texture.  We have been roasting many vegetables lately, our favorites being broccoli and cauliflower.  I will never steam again.
9.  I took a bath and read more of my awesome book.  I rarely take baths (which is not to say that I rarely bathe) because I am so long that a seemingly insignificant portion of my body is actually IN the bath.  But today, it was a good choice.  So relaxing, and I am reading the best book I've read in at least a year:  "Cutting for Stone" by Abraham Verghese.  Frank, you especially would enjoy it, I think.  
10.  Ian and the girls went to the Co-op and brought me back some Newman O's with chocolate filling.  Got milk?  Yes I do.
        

Eviction notice

Yes, this round of chemo has been harder on me than some of the others.  Yes, it could be because of the cumulative effects of multiple rounds of chemo (indicating that the next round will be the worst of all--yikes!).  Or it could be because my sinuses have taken on some unwelcome microbial tenants, and fighting them off takes more energy than I have available.

I have been toying with a cold for over a week now, but on Tuesday morning I woke up with green snot blooming and booming from my nose.  So I called it in to Dr. Oncologist's office, and they in turn called me in.  One blood draw, chest x-ray, and CT scan later, I was diagnosed with a sinus infection and told I was lucky.  It was of course not obvious to me how I was lucky, considering I felt like death two ways, so I asked for an explanation.  Apparently my white blood cell counts were good, but if they had been bad, I would have been admitted to the hospital.  I remind you that I'm supposed to have bad white counts 3-10 days after hard chemo (this is called nadir), and so I consider this stroke of white-cell luck to be further evidence that I have Wonder Woman-quality white blood cells.  (I really want to graph them for you, but the data from Tue. and Wed. are not available to me yet.)  My white cells and I, however, were ineffective at clearing the infection, and so Dr. O called in some troops:  cefipime (IV) and amoxicillin + clavulanic acid (pill for 21 days).  This is quite the eviction notice and then some; hopefully the pathogens get the message.  Being on antibiotics for 21 days will not be pleasant for the beneficial microbes that live in my gut, so I will try to pump them up with yogurt.  Sorry, guys, but that's the best I can do for you.

Today I am feeling markedly better.  Still some nasal discomfort, still feeling chemo-fatigued, still a bit dizzy, but the corner has been turned.  My friend Frank sent me a song to help me feel better, and I would be in trouble if this fantastic Stevie Wonder song DIDN't help me feel better.  I love music.

I am really starting to dread surgery (don't ask for details because I don't know yet and I don't like to talk about it).  To help me look past it, to see the end of all of this crud, my siblings and I are planning a Caribbean vacation for the end of cancer (and after I've accrued some vacation time at work, of course).  Well, "planning" is a bit of an overstatement, but we're going to do it and we're shopping for destinations.  I've never been to the Caribbean, but I think it will afford the perfect vacation for kids and adults alike.  Pictured above is a beach on the island of Culebra, which is momentarily at the top of our list.  Any suggestions from the audience?

Sick mom/healthy scientist

Let me apologize to any devoted followers who have been checking all week for new posts (Ami).  My hiatus was because I got it in my mind that I could finish my sister's wedding afghan before my next hard chemo (this coming Wednesday), and so I have been knitting away my precious blogging time.  I am awfully close to my goal, but I don't know if I'll make it.  Considering that I already missed the most important deadline of her wedding, which was in September, I guess there's no rush.  I'll post a picture of the afghan when I'm done because in my view it is one of my finest pieces and I would love to show it off.

Another thing that kept me away from blogging last week was work.  I worked full days on 4 of the 5 working days, which is rather exhausting (and exhilarating!) for me.  Don't get me wrong, I love going to work and feeling good enough to go to work.  The bummer is that the chemo fatigue lingers, especially in my brain.  Also, and this is something that I didn't realize at first, but I think that being at work forces me to spend energy on trying to be normal.  Normal is as simple as participating in conversations and heating up my own food, both of which are very good for me to do when I am on the upswing.  But this somehow feels like it takes more energy when I'm at work than when I'm at home.  It's nothing I can't or don't want to handle, and it gets easier every day.  By this coming Tuesday I'll feel 100%, and then the crumminess will start all over again on Wednesday.  There are so many things I want to do before then!

Going to work while undergoing chemotherapy has given me two lives:  one in which I am a sick mom and one in which I am a healthy scientist.  I know that being at work doesn't make me healthy, and I know that I'm not always sick when I'm home being a mom, but this bifurcation helps me function.  When I'm being a  scientist, I forget that I'm sick.  I get to feel smart and pretend that I feel fabulous.  And when I'm being a mom, claiming sickness helps me explain to my kids the otherwise puzzling hair loss, "port", and inability to carry them down the stairs.

I do get some time to feel like a healthy mom, and that is the best time.  Like today, when I made pancakes AND built a block tower AND went on a play date.  Click here to hear the anthem for my healthy mom energy.  It's an excellent song by Andrew Bird called Fitz and dizzyspells, and it's perfect because my energy does come in fits, I do suffer from dizzyspells, and I frequently tell myself to soldier on.  Oh, and did I mention the slightly whimsical beat and instrumentation?  With this song playing in my head, this sick mom rocked two little girls' Sunday.             

I spoke too soon

Clearly I was too glib in my previous post about the tedium of my side effects; I had a new and alarming one yesterday.  I was sitting on the floor playing peacefully with Eleanor when I suddenly realized that my vision was deteriorating.  When I looked at a person's eyes, I could not see their nose and mouth.  Nothing was blacked out, but it was more than just blurry.  THEN things started to appear electrified.  I laid down, ate a clementine (mmmm), and called the nurse.  She said to go to the ER if things got worse, but otherwise just talk to Dr. Oncologist about it at the next appointment (today).  The visual impairment only lasted for 20 minutes, and the only other symptom was a mild headache afterwards.  

Dr. Oncologist, as always, got right on it.  I had a brain MRI scan this afternoon, and I'll have my eyes checked tomorrow morning.  She said if it happens again to come in right away so that she can check me out more or less during the episode.  She said that it could be another side effect of the chemotherapy (my hypothesis, naturally, and possibly duh), or that it could be a sign of a migraine.  I've never had a migraine before.  I don't even get headaches.  But now I've had a headache virtually all day, thank you stress and chemotherapy and scan.       

This being my second brain MRI scan, it was much less scary than the first one.  My only complaint is that at times I felt a bit like Auntie Em's house, caught in the twister, spiraling down onto the Wicked Witch of the East.  Said another way, I've been dizzy for several days now, and being in a small space with loud noises exacerbated the problem.  I wore earplugs and headphones to soften the noise, but I declined to have music in the headphones because I kind of enjoy the sounds of the machine.  It's a bit like percussion, and quite rhythmic at times.  During the scans, I find myself transported to a discotheque in Amsterdam.  I've never actually been to either a discotheque or to Amsterdam, but I imagine hip European DJs creating sounds that are akin to those of the MRI machine.  I am not the only one who has found musical inspiration in an MRI scan.  Charlotte Gainsbourg's title track to the album IRM is some excellent musical mimicry of the sounds of the brain scan (click to here to hear the song via YouTube).  

Updated poke tally:

"port"  11

tummy  4

left arm  4

right arm 4

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.