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.

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!

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.