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!

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

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.)

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

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.

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

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