Lines and overlapping circles

I thought I'd start off with a graph, but not the one I promised in the last post.  I chose not to graph the white blood counts because I do not have access to the counts for the particular cells, just the gross white cell counts.  And there was nothing remarkable about the counts last week compared to pretty much every other week since early November:  slightly below the normal range, but high enough to keep me out of the hospital.  Instead, I chose to graph my platelets, which have been all in a tizzy over this whole chemotherapy thing.  See above.  

While I had powerpoint open, I decided to make another diagram.  I'm calling this Relating to Sickness, and although it is imperfect it will work for what I want to say.  I used to be in the blue circle.  I was quite ignorant of true sickness and what it entailed, and that was fine with me.  But now I have crossed into the red circle (dragging several caregivers with me--sorry about that) and am quite familiar with sickness.  A further category within the sick people is reserved for the super duper sick (either longevity or magnitude of the sickness count, I think), a category with which I am grateful to remain ignorant.  Finally, although formerly sick people are by definition healthy, I'm putting their circle within the sick people circle, because they are in a unique position to relate to the sick people.  Their advice is often appreciated, and the sick people yearn to become "formerly sick" and dole out the advice themselves.  I know I'm looking forward to that, anyway.

I was thinking about this because recently a woman in the waiting room at the oncology clinic launched into this whole thing about how her sister had breast cancer and oh my it was horrible but she's still alive blah blah blah.  I was polite, but on the inside I was a bit dismissive and defensive, thinking "you have no idea", putting myself on this pedestal of suffering.  I was embarrassed for feeling this way, for there is far greater suffering than mine, in terms of sickness and otherwise.  And besides, there was no reason to feel ruffled by her desire to relate.  Relating is the basis for small talk, and when in an oncology waiting room you can count on talking about the weather or cancer, two experiences you almost certainly share with your neighbor.  Additionally, I have come to realize that caregivers of the sick have their own valuable perspective on the sickness; their suffering, although of a different and perhaps non-physical nature, runs deep.  Maybe this woman was a caregiver for her sister.  Who am I to devalue her story and her experience?  

I had a point, but I've lost it.  I suppose it could be, "I had a negative thought this one time, felt bad about it, and thought of some overlapping circles to describe it," but I'd like to think it was more eloquent than that.  I worked a full day, and it's been a long one; the first day back after hard chemo always is.  Hopefully you can read between the lines and figure out my point, or at least enjoyed my overlapping circles.      

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?

Elaboration

I realize that I should elaborate on the previous post.  I'm still hanging in there.  I'm still toughing it out.  I'm still eating and drinking and smiling.  I'm just sick of being sick.  That's all.

Tomorrow will be better.  

Not gonna lie

This sucks.

Sharp as a post

I am known, at least to Ian, to be a mixer of idioms.  I think this is because I tend to learn by understanding rather than to learn my memorizing.  For example, vocabulary and trivia-type sections on standardized tests have always yielded my lowest scores, probably because they require gross memorization.  (I'd like to give a shout-out to my cousin Lauren who last week valiantly participated in a multi-school Geography Bee but was eliminated in the first round.  Don't worry, honey:  there are other ways to measure intelligence, and you are intelligent by all other measures!)  Idioms, I feel, must also be memorized, because to merely understand an idiom leads to idiom mixing.  For example, I have been known to answer, "Dead arrow!" when asked where to steer the canoe.  Clearly I was mixing the idioms "dead ahead" and "straight as an arrow".  There have also been situations in which I was ignorant of alternative meanings of idioms.  For example, when I emailed the final draft of my preliminary exam to my PhD thesis committee I claimed it was the "money shot".  I was excited at my achievement, and I knew "money shot" only in terms of basketball (a three-pointer at the buzzer, for example).  A bit later in life I must have used that idiom in front of Ian, and he burst out laughing and told me its adult context (I don't want to be responsible for linking to this definition, so you can google it yourself).  Only then did I realize that that email to my thesis committee contained my most embarrassing idiom blunder, to be sure.  Fortunately, they gave me a PhD anyway.  Whew.    

Today I am intentionally mixing two opposing idioms to describe my brain:  sharp as a tack + dumb as a post = sharp as a post.  Which is to say, not sharp at all.  I have settled on this as a fair description of my cognitive state because I don't think that chemotherapy has reduced me to being DUMB as a post, but I am certainly no longer sharp as a tack (if you accept that I ever was, of course).  I have moments of sharpness, and moments of postness, so...sharp as a post.  This usually clears when the dizziness clears, which should be next Friday or so.  This cognitive weakening is far more frustrating than any of the physical side effects.  I can live without hair and breasts, but please not my brain!!!!!!!!!!

The final proof that I'm temporarily reduced to being sharp as a post is that I did not trust myself to compose this blog entry at the time that I intend to use it, which is sometime this coming weekend.  I composed this entry on 1/19 at 9:00 pm, no doubt riding the steroid wave from hard chemo.  I like to call this 'roid wave the zone--the dexamethaZONE, that is (reminder:  dexamethasone is the name of the anti-nausea steroid.  For those of you devoted followers who have been curious, "In the dexamethaZONE" is the title I have been saving for a 'roid-induced 2:00 am blog post; fortunately, I'm never in the ZONE that long.)  Thank you, dexamethaZONE, for facilitating this post.  :)                  

Blue machine-->Puke machine

I think I set a new toughness bar for myself today.  Walk with me through my morning and early afternoon:

4:30  diarrhea
7:20  diarrhea
7:30  dress Azalea
7:40  change Eleanor's diaper
7:45  puke in trash can
7:50  dress Eleanor
7:55  dress myself
8:10  lie on floor in toy room
8:20  walk to chemotherapy
8:35  have blood drawn from "port" (needle remains in "port" until 2:30 pm)
8:40  take one sip of lemon-lime gatorade
8:41  run to bathroom
8:41:20  puke in toilet while there is a needle in my "port" (I find this to be a significant contribution to my sense of my own toughness, although puking with a needle in one's "port" is actually no different than ordinary puking)
8:44  return to waiting room
9:00  move to exam room
9:20  meet with Dr. Oncologist (breast red spot has really decreased now, huzzah!).  She calls me something slightly endearing and complimentary, but now I can't remember what it was--maybe "How's my tough patient?" or something like that.  We discuss the possible causes of my ailments, and I propose that they are directly related to the Naked-brand Blue Machine juice I drank the night before.  It technically wasn't supposed to expire until March, but it had been opened for probably two weeks.  No one's mouth had touched it, and none of my five senses detected microbial contamination.  So I drank it.  It was just what I needed at the time, but I believe that it turned into my worst enemy today.  Also, Ian was sick with a sore throat all weekend, the girls have been snotty for days, and I was starting to get a scratchy throat on Tuesday.  Dr. Oncologist therefore checks me out for a possible cold or throat issue, but it is gone today thanks to lots of green tea and the good things in Blue Machine.  We determine that I have low platelets, no cold, no fever, and that something in the Blue Machine turned me into a puke machine.  I am therefore cleared for chemotherapy.
9:50  move to chemotherapy room 8 (the best one, with the biggest window and the most plants)
9:55 diarrhea (in the shared bathroom, which is always a bummer when one is having troubles)
10:10  chemotherapy begins
10:15  drink five sips of green tea
10:30  eat half of a graham cracker square
10:35  watch one episode of Friends
10:55  Ian heads home to eat lunch with Lori and the girls
11:10  (approximately) I fall into a deep, Benadryl-induced sleep
12:00  (approx.)  Ian returns
12:15  (approx.) I ask for more blankets (those fluids come into my body at room temperature, which is quite chilly from the perspective of a superior vena cava!)
Times unknown:  The nurse changes my IV bag with each new drug.  I scarcely wake up.  At one point I hear a different nurse track down my nurse and say to her that the "little girl" needs her IV changed.  I haven't been called a little girl in a very long time.  
2:30  Nurse removes needle from "port"
2:35  Ian and I bundle up against the frigid day and slowly walk home.  
    
I might not be tougher than you, and it wasn't quite my toughest day so far (there are several that tie, and they usually occur 3-4 days after hard chemo day), but it sure sounds impressive, doesn't it?

I ate a light dinner tonight and am keeping it down just fine, probably thanks to the million different anti-nauseas that I am on for chemo.  I only regret that I didn't get to eat my "last supper" breakfast that I like to have on hard chemo days.  There's always next time, which will be the last time.  Huzzah!

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.             

The object of obsession

We've all been taught that it's not polite to stare at people.  And then there's the golden rule, to treat others the way you want to be treated.  These basic kindergarten rules then grow up to become a sense of political correctness when we're adults.  My sense of political correctness, specifically the "do not stare at the minority person" rule, has been drilled so far into me that I'm pretty sure I fail to make equivalent eye contact with the disabled person in the room, for example, as I do with everyone else.  Then I realize that I'm overcompensating for the risk of staring, so I look over and smile at them, but it's calculated, a bit belated, and therefore unequal.  I think that this scenario demonstrates that at the core I am missing the mark on equality, although I like to think that at least the spirit of political correctness is captured in my over-thinking.

I've been thinking about these things this evening because today I was a victim of staring.  Yep.  A table full of 6-year-old girls, with heads tilted and jaws dropped, were blatantly staring at my bald head.  I wasn't intentionally rocking the baldness; my scarf came off when I removed my winter hat.  Their stares were instantly hilarious, so I gave them a huge grin before reapplying my scarf and returning to my girls and our party (happy birthday, Mazzy!).  With my scarf in place, they lost interest in me, but their stares had made an impression.

I do not anticipate any self-esteem issues resulting from this encounter because I am emotionally comfortable with my baldness.  Also, the perpetrators were six.  Instead I have learned a valuable lesson:  sometimes people don't behave in the most polite manner, but as long as the error is coming from a naive or good-intentioned place, perhaps it's okay.  Perhaps it can even be funny to watch people fumble with their political correctness.  This lesson is not to say that good manners are unnecessary; rather, I'm hoping that this experience will help me to stop over-thinking my interactions with the minority in the room and to simply treat people like people.  I also hope that when I fail, I will more readily laugh at myself for how ridiculous I must have looked.    

Good green eyes

I'm not feeling very inspired tonight, as my guts are in turmoil and I am extra fatigued from participating in a 20-minute family walking exercise video (it felt good at the time; it was impossible not to join in with the little cuties as they marched in place).  Therefore, I will keep this to the point:  I have perfect vision with my glasses on, and my brain looks "good" according to the MRI.  The eye doctor said that my impaired vision episode of Tuesday was probably a migraine.  I asked how it was related to the chemotherapy, and he said that it probably wasn't.  I of course am dubious of this conclusion because I had no migraines PRIOR to chemotherapy.  I am to return for a follow-up eye exam in 3 months.  I will gather migraine information from Dr. Oncologist at my standing Wednesday appointment.

I am obviously relieved that nothing more serious was found, but I am definitely rolling my good green eyes at all future migraines.  If Tuesday's episode was not a one-time thing, I will be annoyed.        

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

A professional patient with professional care

How am I doing today?  Am I better or worse than yesterday?  What do I need to feel better?  These are all exceedingly difficult questions to which I have no answers.  I know that I was the absolute worst over the weekend, and I know that I'll feel monumentally better by this coming weekend, but everything in between is just shades of gray.  The (now-tiresome) side effects, in order of appearance:  fatigue, hot flashes ("chemopause"--thanks Lori and Kendal!), sore bones, constipation, sore fingertips and nails, blurred vision, sore guts, dizziness, sore back, eye twitches, brain fog, diarrhea, fatigue.  The treatments, in order of administration:  rest, visitors, helpers, heating pad, oatmeal, gatorade, grandma Lori taking the girls for 24 hours Friday/Saturday (an essential treatment for all of us), yogurt.  The visitors and helpers are so critical; a shout-out to all of you who made time out of your busy holiday break to spend time with us and help us.  You make me feel like we're all in this together, which is incredibly powerful.  We're getting through this!

As your teammate I should fill you in on the cancer's retreat.  Visually, it's nearly gone.  There is still a red blush on one side, about the size of a half-dollar, and Dr. Oncologist would be happiest if that went away.  The swelling is also nearly gone.  In short, the success of the treatment continues.

I am spent, but I really want to graph something for you.  Dr. Oncologist says that I'm a bit anemic now, so perhaps my hemoglobin is doing something interesting.  I'll leave you with a hemoglobin graph, with the hard chemo treatments plotted at y=9 and the easy chemo treatments plotted at y=0.

Weakened, but holding steady!