Wednesday, November 30, 2011

New Horizons

Pretty
Yesterday, I was going through crates of curriculum books at school, continuing the gory work of sorting through dusty bins, trashing old files and packing up all of the materials worth keeping.  You see, I am retiring at the end of the week.

Me?  Retired at age 33?  I know, I roll my eyes and shake my head, too.  But the whole full-time teaching thing is just a bit too much on my body right now.  I haven't had much time or energy (read: any) to keep the blog updated over the past few months, as whatever I did have went towards work or family.  After much deliberation on the part of doctors, therapists, and me, the conclusion was to find work a bit less taxing.  I don't think I'm done with teaching forever, just perhaps this form.  And with my current physical condition.  I feel hopeful (often) that one day, my heart and lungs will recover fully and I will have the energy again to give to others.

That's the big news this week.  Tomorrow will be my last day at my job of the past (almost) ten years.  I will miss many things about it:
#1 the kids (the relationships, watching them grow and discover and gain confidence as they mature into big, sometimes-smelly tweens, seeing them develop strong relationships to each other, and feeling like members of their families),
#2 my co-workers (my always supportive school family),
#3 the feeling of knowing what I was doing, the routines, the familiarity of the task at hand...

While other things I won't miss quite as much.


Anyway.  The road ahead is a little foggy.  I know this is the right decision (my throat is killing me tonight after talking to parents all afternoon for report card conferences), but I'm not quite sure what's coming next.  And we all know how I handle uncertainty.  There have been times during the past few weeks that I have felt panicked, second guessing myself, my doctors, wondering if leaving with no particular plan ahead is the wisest decision to make.  We do have a child to feed here.

And then I remember what it felt like last year, realizing my blood cells were making decisions independent of me.  I have to have some say now.  A teeny, tiny bit.  I choose to put my health first, and hope beyond all hoping that everything else somehow magically falls into place.

Like I said, I was going through books yesterday.  I picked up a book I used often when my last name was still Dansky, called The Art of Teaching Writing, a writing teacher's bible of sorts, written by the goddess of all writing instruction, Lucy McCormick Calkins.  Calkins is a professor at Teacher's College, where I attended a week-long institute (on teaching writing) many years ago.  Flocks of teachers gather each summer to hear her wisdom, scribble down her ideas, and gain the insight of other talented writers and teachers.  There are always amazing authors there (Patricia Polacco, Joan Bauer, Pam Munoz Ryan have all made appearances), giving keynote speeches, and later signing autographs (my personal favorite:  James Howe, author of Bunnicula, signed my copy of Bunnicula Strikes Again with bunny ears).

Apparently (though I have absolutely no recollection of this), I got Lucy to sign my copy of Art of Teaching Writing.  When I opened the cover to make sure my name was inside, what I read was this:

Mia-
Celebrate the new horizons that beckon you forward in your journey.
Lucy

Couldn't have said it better myself.

xxoo

Sunday, November 27, 2011

To Climb or Not to Climb?

It was a Sunday evening like any other.  I was finishing up lesson plans for the week ahead, checking my email for updates from my grade partners, when I received an email from Dr. Fisher, one of my radiation oncologists (who treated me a year ago this week).

Subject:  Mia and Kili

Eh?  What's that you say?  Me, Mia?  Kili?

Obv not my photo
I read on to find out that Radiating Hope, this incredible non-profit organization whose mission is to bring radiation equipment to developing countries, is teaming up with Above and Beyond Cancer to send cancer survivors on amazing experiences.  They took 20 survivors to the Everest Base Camp last year, and their upcoming trip is to climb Mt. Kilimanjaro in January.  They are looking for dynamic people with a story to tell - and he thought of me!  

Clearly, I'm flattered. One, that he remembered me.  Two, that I am a dynamic storyteller (imagine me blushing).  But then, hmm.  He wants me to climb the tallest free standing mountain in the world?  I can't even get up the stairs at work without my heart rate flying up to 160-170 bpm, and that's just to get to the second floor.   I wrote back to him, explaining that my physical condition may be a bit limiting for me here (HA!).  I mean, if this were a group trip to visit an ashram in India, I would jump right on board.  My personal Kili could be meditating for an hour straight... But actually climbing Kilimanjaro?  My first question to my mom was, "Do you think they have handicapped parking at the bottom of the mountain?"  Not quite my thing. 

Dr. Fisher writes back to explain that they are taking the "slow" way up the mountain, and I would be provided with my own porter (to shlep all my necessities) and a cook to ensure I'm nourished via food (if not with oxygen).  It's at this point that I begin to actually contemplate doing this.  And it's stressing me out going over this in my head again and again.  How can I pass up this opportunity?  Africa?  So flippin cool.  Bonding with people who understand what I've been through firsthand?  Priceless.

But all those pesky details are what really got to me.  Extreme altitudes?  Not great for someone with a breathing issue/sensitive airways.  Walking 5k, 8k, 12k for a week straight at said altitudes?  Probably less than ideal for someone whose heart races up to 120 while making breakfast.  I'm thinking there's a high probability I wouldn't survive this so-called slow walk.

After much deliberation (with my therapist and cardiologist), I concluded the stars are not aligned for me to tackle this adventure.  It was with relief that I wrote back to Dr. Fisher to tell him the disappointing news.  He was totally excellent about it though, mentioning some upcoming trips later on in 2012 that I might be in better shape to join.  I gave my mom the go-ahead to alert a fellow lymphoma survivor to the opportunity.  He applied in time and was accepted!!  I was thrilled to hear that he received the tickets and will be on his way in just over a month.

I'm busy just trying to regain a sense of normalcy, to pull myself off of the edge of pessimistic possibility on a daily basis.  I do hope, one day, to feel strong enough to take on a physical challenge (have I already mentioned how I really don't like to sweat?), just perhaps not one of that magnitude.

It is borderline ridiculous the places my cancer journey has taken us and I'm *trying to be* hopeful that by listening to my needs and searching out the next direction, my path will continue to reveal itself.  One day at a time, still livin scan to scan, mucking around down in the thick of things.

xxoo


Friday, November 11, 2011

11 Blessings

Today is Veteran's Day.  A memorable day for multiple reasons.  First, of course, we remember and thank the many brave men and women who have risked and given their lives on our behalf.  Second, it is the anniversary of the day after Dan proposed to me seven years ago.  He got down on one knee in the principal's office at my school - the culminating moment of an elaborate scheme, carried out with the help of my co-workers and principal (timed so that we could enjoy the following day off together).  A very happy memory, indeed. 

And today, Judah is back at school (after almost a week of illness), Dan is at work, and I am at home, watching Glee with a cup of better belly tea and a sweet potato pastry.  The sun is shining, the absolutely gorgeous autumn leaves are wiggling around right outside the living room window, and it is warm and cozy on the couch.  I have so many things to be grateful for.  I have decided to revisit that whole gratitude list idea that I worked on in the spring to focus on the moment and the positive, instead of lingering on how I wish things were...

(these are in no particular order)

I am grateful for...
1.  a nearby H Mart and Paris Baguette Cafe, fully stocked with all of the yummy (and slightly healthy) treats a girl could want.
2. the gift of watching my 4 1/2 year old learn to read.
3. my very thoughtful husband, who works so hard to make me happy.
4.  TIVO.
5.  parents who are willing and able to help me (and babysit) in any way humanly possible.
6.  supportive friends - people who genuinely care about me.
7.  that meditation cushion upstairs calling my name.
8.  a driveway (not having to look for a parking spot on my block).
9. access to adequate health care for my family
10.  farm share - fresh, organic, green foods every week...
11. clean sheets on all beds.

What are you grateful for today?

xxoo

Thursday, October 27, 2011

Relaxi Taxi

1 Year End of Chemo anniversary.  Much hairier.  Much warmer.
I am about to embark on a new adventure.  Believe it or not, I have never ever taken a muscle relaxer before.  5:30 this morning I was woken up by a strange pain in my back, behind my left shoulder blade (aka scapula).  My first thought was that it was the same type of pain as I had last year after biopsy #2 angered the beastly tumor in my chest.  I had some wacky spasms that caused labor-like pains in my back and shoulder. 

Luckily, these pains were not quite that severe, but they were not pleasant. 

Fast forward a trip to the doctor's office and some tylenol later, turns out there's just a king-sized knot in my muscle.  Scrip faxed over to the pharmacy and I'm instructed to take one at bedtime.  Until then, nsaids (non-steroid anti-inflammatory drugs - advil, aleve, etc.) and heat, heat and more heat. 

I've been waiting patiently all afternoon for bedtime to arrive, so I can take my brand new relaxer and be on my merry way.  That's my story today. 

I am avoiding discussion of work until further notice.  Just know I am exhausted at the thought.  But tomorrow's another day and then, of course, comes Halloween, every teacher's nightmare.

Hopefully, someday soon, I will have enough mojo to write more in-depth about my survivor life. 

xxoo

PS. Check in again soon for a full report on the Light the Night Walk.  Big success.

Monday, October 3, 2011

Working Girl


LiveSTRONG Day
Apparently, my little cancer vacation* is over.

Tomorrow, begins the next phase.  As to which number this is, I have lost count.  September 30 was another milestone:  the 1 year anniversary of the end of chemo.  Certainly happy to be here, I am jumbled aplenty with other emotions on this eve of my first day of school/work.

There's guilt.  A healthy dose that has grown from feeling slightly responsible for getting sick - and putting on hold the lives of many people who love me, scarring my child permanently, losing a few years of my life to being ill and getting on the road to wellness - into self-blame for any and all of Judah's developmentally appropriate anxieties.  Yes, I would say there's guilt.

There's fear.  Change is scary.  Perchance for others it's exciting.  A thrill.  For me, not so much.  I like: routine, sameness, knowing what to expect, to do lists.  I do not like: surprises, unknown, uncertain future.  I am aware that life is chock full of unknowns, I just prefer to limit them to as few as humanly possible (Dan forbids palm readings).

There's nausea.  A better term is vomitous.  Similar feeling to right before going onstage to perform.  A mixture of nervousness, anxiety and excitement (although we are a tad light on the excitement, heavy on the anxiety).

I realize that once I get going, things will be fine and dandy.  It's like riding a bike.  I'm getting back in the saddle.  It's all for the best.

Happy New Year
Honestly, I walked through Whole Foods today as if I would never see the inside of a grocery store again.  Partly, I am saying goodbye to a calm, more relaxed version of my life.  HA!  The past 16 months have been laced with illness, muscular atrophy, weight loss, weight gain, care packages, many many meals made with love, television debuts (local and international), reconnections with old friends, tears, laughs, hugs, new babies, new friends, new doctors, port in, port out, free trips within and outside of the continental US, beach days, baldness, invisible sunburns, new kitchen, handmade quilts, magic mineral broth, a happy chair, homemade watermelon juice, acupuncture, meditation class, pills, allergic reactions, ER visits, youtube videos, books, neverending thinking-of-you cards**...

The list goes on and on and on...

And tomorrow, I suppose, so does my life.
xxoo




*credit to Christian Fusco
**Laurie Myers, I'm lookin at you!

Tuesday, September 20, 2011

Small Stuff

Tonight I made dinner.  This does not seem like an amazing feat for most people.  I, however, know better.  I have decided (with some motherly and professional vehement encouragement) to applaud myself for small stuff.

When I say I made dinner, I mean I created a meal that was a) all hot at the same time, b) nutritional, and c) enjoyed/devoured by all diners.

pictorial representation of my own stack c/o crumbly cookie
Ingredients:
5 eggs
small pat of ghee
2 tomatos
1 avocado
1 c whole wheat pancake mix
1/2 c org. canned pumpkin
3/4 c water
1/4 tsp cinnamon
2 tsp walnut oil
also, not my eggs (waaaaay too much pepper), they belong to shortbread
1/8 lb thinly sliced kosher salami
fresh basil
splash balsamic vinegar
evoo
salt and pepper


Steps:

Prepare pumpkin pancakes using pancake mix, water, cinnamon and canned pumpkin.

As pancakes cook in walnut oil, dice tomatos and avocado.  Toss in a lovely bowl with evoo and a bit of balsamic, pinch of salt and pepper.
*If you have time and resources, go out back and snip some fresh basil.  Wash and dry leaves, then chop and add to the tomato salad.

Place pancakes in a covered casserole dish in a warm oven.

Using same pan, make scrambled eggs (with ghee).
Deposit cooked eggs into same casserole dish.

While pancakes and eggs stay warm in oven, lower flame and crisp slices of salami.
Pat salami dry (wipe off excess grease) and serve all foods hot and delicious alongside tomato and avocado salad.

Watch child clear his plate.

Sigh.  I savor moments of feeling like my former self - planning and preparing a successful dinner a primary example - as they still don't come as often as I'd like, or as frequently as I expected them by now.  I wish everyone could appreciate an uneventful day.  A day where no one is sick, everyone goes to work or school, cook, clean, menial jobs get crossed off of a To Do list... 

For seriousness, what I was most proud of at dinner was that everything came out hot at the same time.  Sha-blam.  Like I said, it's the little things. 

xxoo
ps. I only dirtied one pan!

Thursday, September 15, 2011

World Lymphoma Awareness Day

Just call me Famous Amos.
I was thrilled to be introduced to a few great people at the Leukemia and Lymphoma Society not too long ago.  I was even more excited when they asked me to write a guest post for their blog about Light the Night and what it means to me. 

I described the first connection that came to mind, which was Harry Potter.  If you're intrigued, feel free to visit the (edited) post here:  My LLS guest blog post

While there are chunks of my first draft that had to be edited in the interest of length, you get the gist (plus, if you've been with me since Day 1, you know my story anyway).  

Today was my first visit to an allergist.  Since I have been having these strange reactions (rash, scant itching, worsened shortness of breath, heart racing) to every single pill I take (including but not limited to: zantac, probiotics, vitamin B, ALA, prilosec...), I decided to take matters into my own hands and go right to a specialist.  As it turns out, I cannot have any allergy testing due to my heart condition and use of beta blocker.  However, after undergoing a very high-tech scratch test (the doctor scratched my arm with a broken tongue depressor), my skin revealed what I understand to be an overproduction of histamine.  The medical term is urticaria, also known as hives.  The treatment (for starters) is to take two low dose antihistamines for the next two weeks and then check in with the doc.


Meanwhile, I really am feeling good about the Light the Night walk coming up in October.  I'm a bit wary about returning to life as a working mom in a few weeks, but I think anything worth doing is going to be scary. 

Today being not only my mom's birthday, but also World Lymphoma Awareness Day (in the midst of a big cancer awareness month), I thought I would highlight some famous Lymphoma survivors (aside from myself).  Would you have guessed Mr. T??  Gene Wilder (the original Willy Wonka)?  Mario Lemieux and even Charles Lindbergh were all of the lymphoma variety.  Paul Allen (co-founder of Microsoft) had it and Tracy Nelson (actress granddaughter of Ozzie and Harriet) beat it, too.  Blood Cancers are a bitch.
What dumb cell would want to mess with this?


I bet it was the chocolate river that got him through.

PGH represents.

Lymphoma before R-CHOP
You know, the guy next to Bill Gates.
This looks like a Law & Order episode, but it is from a much older mystery TV series called Father Dowling.
I am so honored to include some phenomenal new members of our Light the Night Team Mama Mia.  The very generous Casey Edwards, Betsy Madway, Julie Bahuriak, Marcy and Gary Garb, Gabe Pardo, Marla Scarola, The Pflegers, The Wanderers, Andy Love, Susan Burkhardt, and Jenny Lynn Keller have all joined the ranks.  I speak the truth when I say this is a group of givers.  I am proud to call them my friends (ok, I'm related to a few also).

Please do not be mistaken.  There is still time for YOU to join the team!  While there have recently been some huge breakthroughs in treatment, there is still so much work to be done.  One problem we were just discussing tonight at dinner is that in order for treatments to gain approval, there need to be patients willing to take risks on experimental medicine through clinical trials.  Often times, these new drugs or regimens are not covered by insurance and so patients are stuck with enormous bills (if the treatment works - if it doesn't, it's their families who must foot the bill).  LLS is one of the great organizations that is involved in both cutting edge research as well as patient support services (matching patients to appropriate clinical trials and even helping secure payment options in some cases).

What can you do?  Click on the link in the upper right corner of this blog to view my team page and give a tax deductible donation.  I promise you will feel good about contributing (no matter how small) to something meaningful.  And obviously, you are welcome to join us down by the art museum for the walk next month.  This year, I'll be the one with the hair.

xxoo

Wednesday, September 14, 2011

Cancer Grammar

I have never received a Granny Smith from a student.
When we talk about cancer,  we're wont to use an "it".  It's gone!  Or it spread.  It's back.  This is strange to me, since these are our own cells we're describing.  Granted, they're our cells gone bad, gone very, very bad.  But they started out just fine.  Somewhere along the way, they were corrupted by the bullies out in the schoolyard.  Invited to join a gang.  So brainwashed there was no chance at rehabilitation.

The best we can hope for is to kill those bad ones off.

And here I am again in the third person.  Cancer is separate from me.  It does not define me, it does not consume me.  It is a part of me, though.  And it certainly scares me  (more like terrifies me).  No one wants to think of cancer as a male or a female, so we surely wouldn't say he or she.  That seems to personal, too close.  We're talking about a disease, not a boat, for heaven's sake.

But cancer is happening in our bodies.  It is our own cells, or organs, being overrun by the baddies.  We try to disconnect ourselves from them so we don't feel responsible or like our entire persons are being taken over, merged with Cancer, Inc.

I've often wished to be more disconnected from my body.  I'd love to let every twitch and ache pass me by.  Love to ignore tightness in my chest or a heart rate faster than the speed of light.  Being far away from something or someone means you don't see them, hear them.  Can't touch or know them intimately.  If I could be granted a trial separation from a few of my choice body parts, I might take it.

Yet this desire to be less self-aware, less in tune with my own rhythms goes against everything I know I need to be in my future self.  I want to listen to my intuition, to familiarize myself with the new patterns I've developed. 

This evening, I realized it has been exactly 6 months since I had my "remission" scan.  We can call it my 6 monthacancerversary.  Surprisingly, I feel pretty good.  I passed my 6 minute walk test (given in the respiratory therapy department at the hospital), which means I am medically approved to participate in pulmonary rehab.  The test meant my blood pressure was taken a few times, seated, then I walked in circles for six minutes while wearing a little monitor that measures my heart rate and pulse ox levels (to make sure my blood is getting enough oxygen from my lungs).  The pulse ox never went below 97%!  Yay for my well-oxygenated blood!
F-ree parking at the hospital!  Maybe even better than passing the 6 minute walk test?

I don't know that I will be able to work out the rehab with insurance and my upcoming work schedule (hint, hint), but to know that I am capable of doing some exercise on my own is good enough news. 

What's more is that I think we have found a real breakthrough in the breathing department.  My acupuncturist began treating the scar tissue - the leftovers from the beastly tumor - last week.  Slowly, I have felt better and better.  And tonight, I even felt like I was breathing normally.  Please don't ask me to explain why needles poking around in my dead tissue help my lungs to operate more productively.  I just know it helps.

xxoo

PS.  Perchance, you may have noticed the brand spanking new link in the upper righthand corner of the blog.  Feel free to click on it and donate wildly to Team Mama Mia as we will be walking Light the Night this year in celebration of my remission!  (You don't have to donate wildly - any amount will do.  I will love you all the same.)


Thursday, September 8, 2011

Making Sense


Did you ever feel like you were being tried for a crime you did not commit?  Today, I decided that's my new cancer analogy.  I did absolutely nothing to provoke disease here.  In fact, I would go so far as to say I did my best to prevent it.  Well-rounded meals, no dirty habits, no smoking or drinking (unless a glass of wine on Friday night constitutes drinking), very little coffee even.  When I was pregnant with Judah, I used to hold my breath whenever a stinky truck drove by.  No pollution for my child.

Every few months, I trudge into the sentencing room, waiting for some arbitrary jury to decide my fate.  Will I go back to the hospital?  Will there be more pills to take?  More red poison to be injected?  Or am I on probation?  Community service?

Wait, though.  I was doing community service before this all began.  It don't make no sense.

Why are some of us lucky enough to get probation and some are taken away kicking and screaming?  Certainly I am quite relieved that my scan results came back cancer-free.  I don't want to forget to celebrate the fact that I've been NED (no evidence of disease) for a whopping 9 months now.  Thankfully I am not locked in a cell.  It's still a daily challenge not to fear my fate and worry there is just not enough time to do all of the things I want to do.

***
As you may have heard, the 10th anniversary of 9/11 is approaching.  We are all (here in the States) seeing short films and reading essays poignantly reminding us of what was lost ten years ago and how things have changed.  For so many of us, our innocence and trust in the safety of living in the USA was forever broken.  I find it very difficult to watch the documentaries, each CB radio recording or voicemail message a piece of the past.  A snippet of someone's voice never to be spoken again. 

I remember that day so vividly - it was my second day of student teaching, we had just gotten unpacked and started our morning routine when another staff member came into our classroom to spell out what had happened.  I wasn't proficient at spelling as a language (then) and couldn't understand what she was talking about.  Too troubling to discuss in front of 30 seven year olds, she led me into her room to look on the computer at the images.  I still couldn't comprehend what was happening.  No one could.  I lost it when I thought about my brother and friends who lived and worked near the WTC.  No cell service and racing minds make a bad combination.  The children were dismissed and we all ran to find our loved ones and leave Center City (Philadelphia), the home of the friggin Liberty Bell - sure to be the next target.

Dan and I fled to my parents' house in the suburbs and watched the news all afternoon and into the night, finally collapsing with exhaustion, our minds (as those of so many others) reeling.  Thankful our loved ones were alive.  Trying to make sense out of something that makes no sense. 

This is a part of human life, I suppose, the constant need to make sense of the world around you, even when that's an impossible task.  As Al Brooks pokes fun in Defending Your Life, we humans here on Earth only use 3% of our brains.  Perhaps we are not meant to understand everything, we're only meant to try. 


Watching these 9/11 movies and videos is traumatic for me (I can only imagine what it is like for the families of those we lost), but I force myself to watch.  Partly, I think because I'm a glutton for a good cry.  And, because I think it's our duty to hear these stories, to know what superhuman feats were taken on in the midst of a terrible, tragic time.  If nothing else makes sense to me, it's that we are surely here to learn from and about each other, and to support those who cannot carry themselves.  Since I can walk today, and I've already been carried, my job at this moment must be to watch and learn.  I surely owe that much.

xxoo

Wednesday, August 31, 2011

Me as Film Critic

I am probably incapable of being objective.  I am too easily moved by (or attached to) things I read or watch or hear about, most books and movies included.  Know this before going all crazy over my movie review.  PS. Spoiler alert - I may give away some things that happen in the movie.  I promise to only mention parts that were fairly predictable in the first place.  If you want to watch it with fresh eyes and ears, come back and read this post afterwards - I'd love to discuss the film with you.

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.)

xxoo


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

50/50

As if.  As if I could keep a secret.
Many apologies for my absence the past few weeks.  Medically speaking, not much is new today, but the month of August was eventful to say the least.  I realize that's a tease, but that's okay by me since there has to be something new to read when the book comes out.

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.
Last week, I was sure I had stomach cancer and also probably some kidney cancer thrown in too.  I wonder if I will ever reach a point where I will have a stomachache and NOT think it's cancer.  I also wonder what the odds are that I maybe DO have stomach cancer.

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.

xxoo



Monday, August 15, 2011

The Heart of the Matter

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!
It is already well established that I am a sensitive gal.  I've been called worse.  Nurses say I'm "reactive", often experiencing the rarest (and even some undocumented) side effects of medications, known by many friends, family and co-workers as an easy cry, prone to unravel while even reading such stories as Old Yeller, Where the Red Fern Grows, Charlotte's Web or The Keeping Quilt.  Even ask my students.  I have always been an emotional person, raised to express myself, never one to keep my opinions to myself (even ask Dan).  What can I say?  My heart has always been open.   

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
OR
b) overexert myself and bring back that pesky cancer
OR
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.

xxoo

Sunday, August 7, 2011

Luck


"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!

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!
 
And if our good fortune never comes,
Here's to whatever comes,
Drink l'chaim, to life!  
- Sheldon Harnick (Fiddler on the Roof)

xxoo

Wednesday, August 3, 2011

Sugarless

steel cut oatmeal, peaches and blueberries with some very green powder mixed in
The newest diet is sugar-free.  Well, rather, refined sugar-free.  I can have fruit and other natural sugars, but in an effort to reduce the inflammation (and the discomfort it causes), I have decided to eliminate all of those non-natural sugary foods from my diet (temporarily).  And honestly, it's nowhere near as restrictive as the Green Diet (which I failed to stay on for more than 3 days), so I am feeling pretty successful.

banana.  whip it.  whip whip it real good.
(photo c/o serial baker)
I was nervous about last weekend, when we stayed at the beach for a few days.  I knew we'd be visiting the boardwalk, the ice cream man would be walking up and down the shore, hauling his sweet and cold wares...  How would I be able to resist a classic soft serve in a cone with chocolate magic shell coating?  My answer:  Banana Whip.  You may be unfamiliar with this amazing deliciousness.  So let me be the first to tell you what's in it.  Bananas.  That's it.  Frozen bananas get put through this whipping/grinding/masher type machine which turns them into a banana soft serve.  Of course, you could get toppings sprinkled, but I like to enjoy the frozen banana crystals on their own.  It's a perfect solution, even if you do have to drive to New Jersey to get it.

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
I always feel a little gross after a sugar binge, so the fact that it's just not an option reminds me that I don't want to feel gross.  Honestly, I already feel sluggish and bleh, adding more muck to the mix doesn't sound like a spectacular idea.

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.
VERY PINK

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
Last night, we gobbled up the pink pancakes (pureed roasted beets, ricotta, grated apple, cinnamon, vanilla, water and w.w. pancake mix) topped with raspberries and some organic maple syrup.  I will admit, when I cut back on sugar, I tend to make healthier choices that keep me full for long periods of time.  Breakfast on the run this morning (as I dashed off to have just half of my cavities filled...) was just an apple cut up and slathered in almond butter, the freshly ground kind from WF.  Really yummy and I wasn't hungry until 1 (by which time the novocain had worn off and I could attempt to chew foods without tearing apart the inside portion of my cheek).

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...

xxoo

PS. My apologies.  I am not a food photographer.

Wednesday, July 27, 2011

Limbo

you know, limbo.
I met with Dr. L, the pulmonologist, today (I figure I will try to give out some anonymity whenever possible).  Although we waited for more than 45 minutes to see him, he was very patient and kind once we got into his office.  He looked at my recent scans (and showed them to us on the computer - I still think it's very cool how you can look at a moving cross section of your insides), listened to all that I had to say, and gave me a prescription for time.  He does not believe going on steroids is necessary or would even be helpful, as the side effects would probably outweigh the benefits.  He thinks that my symptoms are not even pulmonary, even though I feel like I'm breathing through cotton balls all the time. 

So it's back to the cardiologist I go.  In less than two weeks, I will repeat an echocardiogram to make sure there is no structural damage that could be causing my mystery symptoms.  In my mind, I'm already trying to decide which hospital will host me for my stem cell transplant (somewhere with clean air and very knowledgeable and kind medical staff).  While everyone wants to roll their eyes at me, I can't shake the feeling that it still seems inevitable.   

The bronchoscopy final results are in (thank you, Dr. L for sharing this information with me).  The good news:  everything's negative.  The bad news: everything's negative.  Not that I would enjoy harboring a fungal infection, but I would appreciate some answers.  It is so frustrating to visit, call and email doctor after doctor, only to be referred to a different doctor.  No explanations, no magic pills, no free lunch in this town, that's for durn sure.  I was complaining about this to my brother the other night on the phone, when he reminded me they call it "practicing" medicine for a reason.

I wish I were just conjuring these feelings up - I wish it was all caused by anxiety.  But I promised myself I would trust my body, I would listen to the aches and pains instead of ignoring them and deprioritizing myself. 

If it were only time that I needed, you'd think insurance would cover that.  After all, the cost of daily living is most definitely lower than the cost of chemo and radiation.  Alas, no.  I have to make a decision about work, and fast, as these summer days do not last forever.  I'm stuck here, not wanting to make a decision that could cost me a spot in my school, because maybe all I need is a few more months to heal.

If any of you faithful readers have a crystal ball you can lend me, I think I'd be really good at Divination...

xxoo

To Whom It May Concern

imagine me, hunched over and madly typing away
Dear Chemotherapy,

First off, let me say thank you for doing your job as Cancer Killer Extraordinaire.  I know it was not easy, but you blasted through those stubborn lymphocytes and succeeded in part I of last year's biathalon (although you managed to damage quite a few healthy cells in the process).  I appreciate the fact that I am still alive and that I continue to look back on my days with you as a memory.  Hopefully, someday the memory of the time we spent together will dim (kind of like labor pains) and I may even forget you altogether.  Highly unlikely, but not entirely impossible.  After all, you did sever quite a few memory cells.

I'm just wondering why I must continue to clean up after you almost a year after our last rendezvous.  Just today, I went to the dentist, only to find out that I have not one, not two but SIX cavities that need to be tended to.  Seriously??  SIX??  Thanks a bunch. 

I mean, is House real?  I don't even watch the show, but I'm thinking the writers need to start taking notes from me.  I am the mystery case with all of my symptoms:  tachycardia, shortness of breath, breast pains, weird circulation issues, chest pains, reflux, neuropathy, lightheadedness, fatigue...   I have some theories that involve you.  I'm not blaming you, per se, just more giving credit where credit is due.

What I'd really like to say is that September 30 is approaching: the anniversary of our sixth date.  And whether or not I am back to work on that Friday, I am warning you that I am coming to reclaim my life.  Me (and my army) can take it from here.

Thank you kindly,

Mia R. Blitstein

Friday, July 22, 2011

Complex Patient

soft serve with chocolate shell is the best.
So other than being called "electric" last week by Dr. Henry, my favorite word of this week is complex.  The doc in the ER yesterday chose that one for me and I'm loving it.  Obviously, he meant it in a nice way:  I would hate to be plain and simple.  However, it might not be the worst thing in the world to be just a smidge easier to medicate and fix me up. 

I started taking my beta blocker again upon our return from the Aloha State, hoping I would not react violently (remember the allergic week - prior to our vacation).  While it seemed to improve my very inappropriate sinus tach (without harming my already low blood pressure - as many beta blockers lower both simultaneously), it also left me with a strange side effect:  itching.  Most of you probably remember that was one of my symptoms last year and hence, it drives me batty.  In addition to being super annoying, it gives me extra anxiety.  As if I needed any help in that department.

I gave it a full week and decided it'd be better to switch to a different med.  My cardiologist and I chose another BB and I began taking in a few days ago.  The result was a major drop in my BP.  I called my primary care doc on Thursday am, asking for an inhaler of some sort to try to alleviate my inability to take in oxygen (as if you can even find any oxygen in the air out there - it might be easier to try to breathe on the moon).  They asked to see me and upon visiting the physician's assistant, found my BP to be 72/49 (or something to that effect).  I was to lie vertically until the escort arrived to wheel me across the street to the ER.  Fun times.

Now, of course, as soon as I got hooked up in room 513, all of my vitals started to improve (I'm thinking the industrial strength air conditioning had some say in the matter).  They x-rayed my chest and worked me up just to make sure there was no bigger reason for my feeling like crud.  The doc's description of all of the results:  beautiful.  Clear and beautiful.  Can't ask for a better ER visit than that.

We decided to abandon BB #2 and return to BB #1, but just 1/2 of the dose I was on before.  Also, I must hydrate like crazy and stay out of the heat.  In fact, I think I just may sleep in the living room tonight.  The downstairs a/c is much stronger than the one in our bedroom.  Our next house will have central air (can't the insurance company cover that? and a housekeeper?).

The more I go on feeling lightheaded and tired, the more scared I am about September.  I am not ready to make any concrete moves on the work front yet, as we still don't have the final results back from June's bronchoscopy.  If I end up being treated with pukey p (prednisone), I will definitely have energy to burn and may be able to breathe actual Earth air.  There are still too many unknowns to make a decision. 

xxoo

PS.  One of the nurses asked me if I was a medical professional or just very educated.  I explained that what I am is a professional patient and also call me Dr. Google.  But I was very flattered to hear that I appear to be very knowledgeable.

Saturday, July 16, 2011

Unimpressive

not quite a green machine.
I finally spoke to both doctors (both Dr. H's) after dropping a copy of my scan off at Abington Hospital yesterday morning.  The impressions are the same:  they believe it is just persistent pneumonitis in my left lung.  According to the report, the infiltrate found a month ago is getting smaller (without treatment, obviously), which indicates it is most likely not a fungal or mycobacterial infection.  But without the final results from the bronchoscopy, Dr. Henry will not treat the inflammation with any meds (such as pukey p).  I have mixed feelings about this.

On the one hand, I am quite relieved.  I don't wanna take the pukey p.  I'd rather have inflammation than infection and most definitely would rather have pneumonitis than cancer.  FO SHO.

On the other hand, I would love to take a pill and feel better.  Yeah, that's not happening. 

When I spoke to Dr. Henry last night, I really enjoyed how he described me: as electric!  Whoo!  I can honestly say I've never been called electric before.  I am still smiling.  He believes I could power a small city with the energy created by all of my anxiety.  Dan's response:  a small city? 

And did I say I was doing a 30 day all green diet?  Oh, that must've been a typo.  I meant to say 3 day all green diet.  I got super hungry today and ate a handful of shredded wheat with almond milk.  I wasn't feeling any better, and I need immediacy.  So while I will still continue to eat all of the greens I bought in preparation for the green-ness to follow, I will probably not be looking like Elphaba come August (unless.... I regain my ability to breath normally and a Broadway casting agent comes looking for an understudy...). 

xxoo

Thursday, July 14, 2011

The Position

Cuter couch potato at the opposite end of the couch.
The far corner of the living room couch is my favorite spot.  It's got a good view of the TV, the neighbor's window, out the front door, and I'm pretty sure I've worn my rear end's imprint into the cushion by now.  You know by now that I like the familiar.  Sadly, this position is all too familiar at this point.  I am trying to distract myself from all of the not-calling my doctor is doing by watching Glee, Harry Potter and Friends on TiVo.

It's not really working, hence me writing here.

In other news, I must confess, I have started the 30 Day All Green Diet today.  I am sure I'm setting myself up to be the recipient of many rolled eyes and raised eyebrows.  Let me explain.

For the next 29 (woo hoo!) days, I will attempt to eat only green foods (ahem, from nature).  I can have as much as I want, any types, all day every day.  This includes all melons, most fruits and lots of leafy veggies.  Tonight, I ate spinach pasta (somehow allowed on the diet) with broccoli, evoo, and garlic (also permitted).  For dessert, cantaloupe.

So far, the only thing I want to eat that will have to wait is mochi.  I found a really good international supermarket today that had some good-looking sticky rice dough balls (in addition to lots of foods for the green diet).
Photo Booth is not an actual CT scanner. :(

I'm hoping to detox my system, re-balance my digestive tract and bring some (of my own) energy back into my life.  It's nice to focus my energy on something that does not involve willing the phone to ring.

xxoo

Wednesday, July 13, 2011

The Waiting

Seriously?
The Tom Petty song was on the radio this morning, pre-scan, and I caught myself thinking about how much worse my anxiety levels would be post-scan.  If I am able to tune out what is taking place during the scan, I am able to just focus inwards and pretend it's not real.  I never had cancer, don't have cancer, this isn't me, not really happening.

Afterwards, upon further reflection, it's more difficult to convince myself that I'm not living my own life.  So I treat myself - offer congratulations that I have moved through the motions of yet another scary day.  Dan says we're one day closer.  Closer to what?  I don't know.  An answer?  Feeling relief?  The future?

The problem with getting closer to the future, is all of the uncertainty that lies just beyond tomorrow.  I know I must sound like a broken record, but it's the not-knowing that really does me in.  I can handle bad news, tough situations, if only I have the time to figure out how.  Part of me really misses sitting on my living room couch with my curriculum books spread out all around the computer, writing up all of my plans for the week ahead.  I get to control every single day in small compartments of 30-45 minutes each.  It's glorious.  And even though every day does not go as planned (usually because we can't accomplish every single thing I set out to do), there are always goals to meet, places to visit that I've planned out in advance.

I don't mind a pre-announced assembly or a fire drill, even though they interrupt our instructional time, because I have seen the future of these activities and they are familiar to me.  I like familiar, a well-loved routine.  I can curl up with the final Harry Potter book for the 6th time and read it like the first (mostly because there are too many details to keep track of).  In fact, that's the most comforting distraction when I am feeling pushed way out onto the ledge of unfamiliarity, into a lake of uncertainty - with nothing to hold onto. 

post-scan pizza: nori, daikon radish, avocado, wasabi and pickled ginger
I am a good swimmer - my mother, the former lifeguard, taught me well.  But steady breathing is kind of essential.  Without it, wipeout.

As we wait for the results of today's scan, I am both watching an old Harry Potter movie and reading the final novel - with excitement for the final movie.  It's the best alternate universe where I know what is coming around every bend, and where I can fantasize about everything being under magical control.


PS.  It's official:  according to my cardiologist today, I do have inappropriate sinus tachycardia.  Inappropriate, alright.  Cause: unknown (his hypothesis is that it's just my heart's reaction to the stress of treatment).  Continue taking beta blockers to improve status.

xxoo

Monday, Tuesday, Scanday

"just think lovely, wonderful thoughts, and up you'll go..."
It is time for another CT today.  I am squeezing it in between a visit to the cardiologist and the acupuncturist.  I have the typical scanxiety mixed in with some added doom since it has only been a month since my last scan (in the ER). 

Not much to say.  Will be happier when it's over.

xxoo

Friday, July 8, 2011

More Mochi, Please

a mochi sampler - custom created by us on the big island
I am hooked.  The mochi we had in Hawai'i was really really tasty.  For those of you who are (sadly) unfamiliar with Asian delicacies, mochi is this gummy dessert that can resemble playdoh (if it's purple sweet potato, or ube, flavored) or a hunk of sticky rice.  You can buy it all over the place in Hawai'i: supermarkets, farmer's markets, even a convenient store in the middle of nowhere has fresh made vanilla mochi. 

Once we returned (and realized we had only a stale hunk of it remaining - ew), I started to search for places we could find it around here.  Living in a fairly diverse, largely international city, I figured it should've been an easy task.  Not so much.  According to what others have Yelped, I have to go to some random bakeries in Chinatown and ask the ladies behind the counter if they are hiding any mochi in the back.  Hmm.

However, I did stumble upon a mochi ice cream review by some locals who are systematically trying and writing about each and every Trader Joe's product.  It received a 9.5 out of 10, which sounded good enough to me.  I bought two flavors (mango and chocolate) to try out for dessert tonight and they were a hit.  It's a little ball of ice cream wrapped in mochi (similar to doughy bean cake).  YUM!  Now I am covered in whatever powder they roll them in so they don't stick to everything.

In other news, I spoke to Dr. Henry this evening to investigate further into what results we are still waiting for.  Basically we are trying to rule out infection so that if this stubborn infiltraitor (new word alert!) is just inflammation, it can be treated properly.  However, he still feels as though the tachycardia is a mystery.  I am seeing my cardiologist next week and will ask yet more questions.  Furthermore, Dr. Henry wants to scan me again to get a picture of what my lung is up to now, a month after the infiltrate was discovered.  So don't put away your positive energy just yet, folks, when I said meet me back here in 3 months, what I meant to say was:  Don't forget to check the blog daily to see when I might be having another scan. 

I'll be honest, I was actually hoping he would do a CT/PET combo (just to put all of my fears to rest), but no dice.  He doesn't think insurance will go for it so soon and he doesn't think it's necessary (too much radiation, blah blah blah).  I would really appreciate a daily scanner.  Like those clothes-fitter-scanners at the King of Prussia Mall?  You go into the booth, some weird rays sense your body when you stand on the x's and then, instead of a list of the sizes you'll be in every designer label, you get a print-out saying either "cancer-free" or "ALERT, ALERT, THIS IS ALL SYSTEMS ALERT."  At least this way, nothing sneaks up on you or gets to stage IV before you've found the dastardly creeps and notified them they better come out with their hands UP and in full view.

I am enjoying another FB fast, although I do like to know about really important goings-on with people I care about (so if something's happenin, shoot me a msg, k?).  The past two days I have spent a disproportionate (and ridiculous) amount of time trying to design a button for my blog.  It was successful and I now have a fancy little image (of me and my blog title) that you can click on to link you directly to my blog.  Unfortunately, I have only been able to post this on my blog.  Which means that you can now get from my blog to my blog.  I'm workin on it.  I was not born to be a web designer, that's fo sho.

xxoo

PS. But seriously, isn't the button cute?