Wednesday, August 31, 2011
Went to see 50/50 tonight. It was a free screening (aaawww, yeah!) slash date night for me and Dan. Dinner in the car en route to the theater near UPenn, parking karma led us to a spot directly in front of the end of the line to get in. Perfecto. I held a spot in line (they fill up the theater and turn everyone else away), while Dan ate his dinner in the car. A cute boy was in line behind me and gave me a smile, asking if I was in line to see 50/50 - he was just making sure he was in the right place. Ok, maybe he wasn't trying to pick me up, per SE, but he was easy on the eyes, so let's say (for fun's sake) that he was. Makes the story more interesting.
Went in, found an empty neck-stretcher seat 4 rows back from the screen, and got ready for a packed theater movie. Luckily, it seemed that most of our fellow movie goers enjoyed a quiet space with no distractions during the screening, so while I braced myself for annoying college kids with no manners, I was pleasantly surprised to watch the whole movie with only 2 annoying call-outs.
I, on the other hand, was already crying by the opening credits, where the main character (Adam) is running by the river, blissfully unaware of the imminent insanity. It continues to blow my mind how clueless I was before we started down this path; I immediately feel for someone experiencing it all for the first time, even if they are a slightly fictional character. There were a few other moments - his diagnosis (the world around him goes totally fuzzy), when a chemo-buddy passes away and Adam is actually faced with death, or as he is scanned and consequently set to find out the results - that I felt like, "yeah, that's just what it looks like." Or, "see what I mean? That really sucked." But Seth Rogen was there for comic relief, and there is some romantic plot thrown in for those of us who hate to see an adorable (and wounded) guy feel so lonely.
It was the kind of film that got me to reflect on my own experience last year (and now) and I would watch it again, privately, for the chance to make even more connections. I appreciated the fact that while Adam/Will was very different from me personality-wise, the stages of his emotional acceptance (if that's how one should coin it) were very similar to mine (we did not think about death right away - that came later). The shock of the diagnosis lasted well into my third round of chemo. What's more is that his experience was different enough from mine that I didn't have to see myself in every scene. He insists on facing much of his ordeal on his own. Lucky for me, that was never an issue.
Clearly, I could go on for a while - and I'd love to discuss it with any fellow screeners - but I don't want to give too much away. I do want you to see it. The movie was honest and straightforward, while still retaining some Hollywood qualities.
I would give it a two thumbs up. I would be surprised if people did not react to this film, though. Dan and I were discussing people's motives for going to see a movie like this (aside from it being a free screening). Does the trailer make it seem like a cancer comedy? Are there people who genuinely want to know what it's like to get cancer (and do they think that by watching this movie they will actually know)? I'm curious (and I realize I'm putting this out there to a bunch of people reading a cancer blog) - are you interested? Would you go to see this movie? Why or why not? (5 pts.)
PS. Joseph Gordon-Levitt is frickin adorable. At the very least, looking at his dimples for a few hours is time well spent.
Sunday, August 28, 2011
|As if. As if I could keep a secret.|
Meanwhile, we've survived an earthquake, a hurricane and tornado warnings this past week (along with most of the East Coast) and have been rewarded with a cool, crisp evening, crickets peacefully chirping outside. Not that I would welcome anymore rain, but it does tend to drive away that marching band...
Tonight I broke my no sugar rule and made cookie dough (if you roll it into little balls and freeze them, you can have warm, homemade cookies in 10 minutes whenever you please). They are made with whole wheat flour and organic sugar, blah blah blah - they're still chocolate chip cookies. The best part about them is you can just cook them until they're almost finished and eat them hot and gooey. Tomorrow, back on the wagon. All this being trapped indoors thing (yes, it was only about 24 hours) made me want to eat sugar.
School starts soon and I am trying my hardest to be ready by October. I push myself to take walks and to try to cook (pancakes for breakfast, anyone?). I know I need to be ready to move - like, a lot - if I'm going back to the classroom. I try to monitor my heart rate and note when it's racing to see if there's any connection to something I did or ate. So far, no dice. The holter I wore a few weeks ago showed a slight decrease in my heart rate since taking the beta blocker (previous time my avg. bpm was 105, this time it was 92). While that is definitely a step in the right direction, it does nothing for my dizziness (or lightheadedness) but increase it, as it decreases my blood pressure. What's more, my heart rate jumped up to 148 a few times (once after taking a zantac - the most gentle of acid reducers around). What the heck?
Nevertheless, I couldn't resist getting new folders and labels and copybooks and pencils and glue sticks for my maybe kids this year. Last August there was not a chance in all of Atlantic City that I was headed back to school in September as I was busy with rounds 5 and 6 of chemo. This year is a different story. I am still recovering, though, and I wish I could just hurry up and heal my insides back to normal. Or at least, whatever my permanent normal is going to look like. You know how this uncertainty does a number on my anxiety.
What can I do to take an active role in my recovery, when what my body needs most is time? I've put myself on a series of vitamins (recently including an excellent probiotic) and supplements intended to reduce inflammation and restore immunity and wellness. I try to take a walk (usually with the dog) every day that the sky or the Earth is not rockin and rollin. I try to distract myself or do some meditation (does a long bath count?) or maybe read a trashy magazine in an attempt to let my shoulders drop down below my neck.
I know I can't rush things.
This week should be an interesting one. I have my 6th (please be final) cavity to be filled, some blood work and acupunture to attend to, though not simultaneously. Then, next week I have my first PET scan since March. I am absolutely convinced it is not going to go well. This is how I do things, people, I must expect the worst possible news so that I can be pleasantly surprised if I find out I am wrong.
|My experience involved a lot more tears.|
This Tuesday, Dan and I are going to an advanced screening of 50/50, the upcoming movie about being a young adult diagnosed with cancer (based upon Will Reiser's experience with spinal cancer). I am slightly nervous about keeping it together - aw, hell, I will surely not be able to keep it together - and not making a complete scene in the theater. But I am looking forward to the cleansing aspect of it, that I even get from watching the trailers, that says I have been where you are, the stages, the baldness, the being sick and sick of it all. While I wouldn't wish any of this on another person, it's nice to know that someone else understands.
|Wouldn't this be awesome?|
I'm off to sip my fresh watermelon mint juice (thanks to Dan and the amazing Breville c/o Michali and Jimmy). Nighty-night.
Monday, August 15, 2011
|This is my are-we-having-fun-yet face. That walkman-sized thing on my shoulder? The receiver for the Holter monitor I'm wearing today. You want to be hooked up to stuff? Don't have to go to the hospital to do it!|
I have been taking a beta blocker for over a month now - it was a little touch and go in the beginning with some itching (anxiety, much?) - but it seemed to do the trick and my heart rate upon examination in the cardiologist's office is a respectable 82. Still, this BB did not seem to do much to relieve my fatigue (in fact, as this type of medication is made to slow your system down, it definitely worsened the exhaustion in the beginning) or my tendency towards feeling lightheaded, especially when I stand up.
This initial diagnosis of inappropriate sinus tachycardia (basically means that my heart is racing for no detectable reason) of course led to some interweb searching. I stumbled upon some autonomic function disorders, but I didn't seem to fit in any of those categories. Last week, my mom accompanied me to get a second opinion from a cardiologist at Pennsylvania Hospital. After taking a good look at my most recent echocardiogram (ultrasound of the heart) and my other records and reports, he decided I have P.O.T.S.
Hmm. Pots, you say? Yes, POTS. Postural Orthostatic Tachycardia Syndrome. Ooooh, first I get a malignant disease, then some inflammation, and now, now I get to have a syndrome, too? It's too good to be true.
POTS is a member of the autonomic disorder family, which would seem to fall under the umbrella of neurology, since it's all about your brain's job of sending and receiving messages. However, since this particular condition seems to be ruled by the heart, cardiologists are the primary treating doctors.
I'm still not entirely convinced that I have this syndrome, as it's primary characteristic is that upon standing, heart rate jumps and blood pressure drops - both dramatically. My problem is that my heart races and blood pressure is low even at rest (last night, after laying in bed for a few hours, my pulse was 92 - and that's with medication to keep it low). I never got the "tilt table" test, which many websites indicate is vital to a diagnosis, so I don't consider this the final word on my situation.
Either way, the beta blocker does not eliminate all of the symptoms of this syndrome, it merely aids in the tachycardia portion. The poopy part is that because the job of a BB is to slow down your system, it also lowers your blood pressure. Mine was already at the low end of normal to begin with (94/64). Now it is down to 80/50, maybe 88/60 if I'm having a good day. Low blood pressure is the leading cause of lightheadedness.
The biggest obstacle in the treatment of this POTS business for me is that little chemical sensitiviy thing I have going. I will surely get whatever crazy annoying side effects there are to whatever drugs I use to rectify the situation. Like Dr. Henry says, "there's no free lunch." Which really stinks, cause I like lunch, and definitely free stuff.
I still have not made any concrete decisions about returning to work this year. Certainly, my main goal is to feel good. And if feeling good = return to work, then so be it. In the meantime, I am afraid to
a) lose my position at my school and never be able to return there in the future
b) overexert myself and bring back that pesky cancer
c) be bored at home and drive myself crazy with anxiety with no work to keep me mentally occupied
While last year at this time, I was perpetually requesting a fast forward button, this August finds me searching out pause. I would actually like to freeze frame the next month and give myself a chance to find my equlibrium, be it with salt pills and lots of all-natural gatorade or the potentially dangerous/miraculous chemical concoctions.
Is there any chance of finding that universal remote (or, as it's known in our house, "the mote control") from the Adam Sandler movie Click? C'mon Hollywood people, I know you're out there.
Sunday, August 7, 2011
"May the odds be ever in your favor." - Effie Trinket (The Hunger Games)
As I'm sure every person affected by cancer (or any game changer) does, I can't help but question why. Why did this happen to me? What did I do? What do I need to change? Where did I go wrong? It seems clear that if I didn't ask such questions, I'd be headed for a repeat performance, which I'd prefer to avoid if at all possible.
Still, you would think that at some point, the questions would stop. One would accept the turn of events and continue on in the direction of said life. I guess I'm just not yet at that point. I still find it terribly difficult to wrap my head around just what took place last year (and that I still feel poo-ish). I could stare out into a sky full of stars for hours and be no closer to comforting answers. I just don't get the universe and its misguided sense of justice. There are so many blessed people, who go decades (lifetimes, even) without knowing what it means to be devastated, traumatized by life's obstacles. There are people who plan and carry out their plans accordingly. People who never wrestled with illness, or homelessness, or hunger, or infertility, or even the remote possibility that things might not go on as expected.
And then there's the rest of us. Comparatively speaking, of course things for us could be much worse. In last week's People magazine, there was a story about a woman whose abusive husband shot her in the face (believing she was flirting with another man), completely disfiguring her (she couldn't sip a drink without an upper lip). In 2008, she was given a face transplant and is much happier now that she looks more human. Children in Sudan. Innocent kids stuck in an Iranian prison.
Comparatively speaking, I am lucky. I have a loving family, excellent friends, access to healthy food and clean drinking water, a home, freedom, a job (if I can find a way to do it), clothing, the whole nine.
My struggle is this: how do I come to terms with the fact that every person is dealt a different hand in life? You get what you get and you don't get upset. We say this to Judah all the time. I don't want to live with anger that someone else faces milestones with ease, while these milestones seem overflowing with obstacles for me.
I know with certainty that there are many, many people who feel this way. Anyone confronted with infertility is at the top of my list. [P.S. Why in the world do they teach you in middle school it's so easy to get pregnant anyway?] I know I'm not the only one.
So far, the only "wise" answers I have heard are as follows:
a) You are being put through a test of wills. If you pass, you will gain passage into the next round of life.
b) You are being presented with hardship because you can handle it. Others are too delicate, but you, you are strong like ox.
c) You got dealt a bad hand.
d) You misbehaved in a past life?
e) You-Know-Who has a plan for us all. It's all just meant to be. One day you'll look back on this and say, "wow, I wonder what would've happened to me had I not had _____. thank heavens."
f) There ain't no rhyme or reason to any of this.
We all know that no one has any definitive answers. However, that does not prevent us from trying to come up with satisfactory explanations. We would never have found vaccines or cures for diseases without the drive to change our own luck, not to leave the peoples' chances of survival up to just "fate".
As I was driving alone in the car this past weekend (a rarity), I found myself listening to an old Ani Difranco mix. I was so comforted by the fact that I could recall lyrics. Some of you may be unfamiliar with her music and thus may be unaware that her songs have hundreds of words in them. To be able to remember them all (way back from my high school and college days) made me feel like some synapses are firing. Even if my brain is battered from chemo and bruised from the trauma of being diagnosed and treated for cancer, something in there is still functioning cause I can remember the words to Ani's music. And even though my lungs didn't feel full, I forced myself to belt out more than one profanity in an effort to rid myself of the built up anger towards this whole darn situation.
For your pleasure, I have pasted some pertinent lyrics below. The first is an excerpt from one of my grand car performances and the second is a more traditional tune whose words ring so true, I can't help but cry each and every time I hear them.
Am I headed for the same brick wall
Is there anything I can do
About anything at all
Except go back to that corner in Manhattan
And dig deeper
Dig deeper this time
Down beneath the impossible pain of our history
Beneath unknown bones
Beneath the bedrock of the mystery
Beneath the sewage system and the path train
Beneath the cobblestones and the water main
Beneath the traffic of friendships and street deals
Beneath the screeching of kamikaze cab wheels
Beneath everything I can think of to think about
Beneath it all
Beneath all get out
Beneath the good and the kind and the stupid and the cruel
There's a fire that's just waiting for fuel
- Ani Difranco (Fuel)
Life has a way of confusing us,
Blessing and bruising us,
Drink l'chaim, to life!
Blessing and bruising us,
Drink l'chaim, to life!
God would like us to be joyful, even when our hearts lie panting on the floor.
How much more can we be joyful, when there's really something to be joyful for?
To life, to life, l'chaim,
(To Tzeitel, my daughter--my wife!),
It gives you something to think about,
Something to drink about,
Drink l'chaim, to life!
To us and our good fortune!
Be happy, be healthy, long life!
Be happy, be healthy, long life!
And if our good fortune never comes,
Here's to whatever comes,
Drink l'chaim, to life!
Here's to whatever comes,
Drink l'chaim, to life!
- Sheldon Harnick (Fiddler on the Roof)
Wednesday, August 3, 2011
|steel cut oatmeal, peaches and blueberries with some very green powder mixed in|
|banana. whip it. whip whip it real good.|
(photo c/o serial baker)
Honestly, while I know I would really enjoy a doughnut (also hard to pass up at Juniors, where they sell Banana Whip in Margate, NJ), or a loaded brownie, or even just a whole wheat chocolate chip cookie straight out of the oven (thanks again, Shir), I find it's not that hard to say no.
|brown rice cakes, almond butter and pureed strawberries|
While at home, I am big on cutting up a ripe mango, mixing in a few spoonfuls of greek yogurt (full fat, baby), then sprinkling sunflower seeds and maybe a small drizzle of macadamia nut honey on top. That was tonight's dessert. SO good, I could've eaten 3 more bowls. Sadly, I must wait for the other mangoes to ripen.
I've gotten back to my Deceptively Delicious ways as well. I know this cookbook caused quite a stir when it was first released. In my opinion, it's a great way for me to get more vegetables into the foods I eat with my family. I do not deceive my child into thinking there aren't healthy ingredients in his food. However, I ask for his help in the preparations (if I have the patience), and he sees the pureed cauliflower and beets that are required for some of our favorite recipes.
|not AS pink, but more delicious after being cooked|
While I still can't see myself going vegan (Sorry, Kris Carr, I like yogurt and feta and sometimes even chicken), I can try to get more veggies into my diet and less crap. Next up: adventures in juicing...
PS. My apologies. I am not a food photographer.