Kids

A Good Book

Okay, I confess:  I'm selfish.  I went in to visit my kids at school today to check in on them, to see what the room looks like (still pretty clean - very impressive, Chris) and to find out exactly how much room that tent takes up.  But mostly, I went for a pretty selfish reason.  I wanted to feel normal.  It was so nice to hear their voices (and sign with them), and see their faces and to say things like, "I'm looking for a group that is ready to come to the rug."  Or, "Student X, where are your glasses/hearing aids?" or "We all listened when it was your turn, now be respectful and give so and so your attention."  It's like putting on your favorite pair of sweatpants after wearing pantyhose all day long - so comforting and familiar.

Since they already know the facts of what's going on with me, I was glad we didn't have to devote all of our time together to cancer talk (like Coffee Talk, but instead of Mike Myers in a wig, it's Mrs. Blitstein in a wig).  They did have some questions for me, mostly about the hair.  I wore my blonde wig and one child initially thought my hair had grown back (she was a bit disappointed when I revealed it wasn't really my hair).  Another child had never heard of a wig before and expressed concern over what might happen if I dropped something and had to bend down to pick it up.  Wouldn't the wig fall off?  Of course, I demonstrated that the wig was on pretty tightly and unless a tornado came through the room, would not going anywhere.

I think they mainly focus on the hair because it's something they can see and connect with.  They don't see me on my bad days and they can't touch with their hands this disease that is taking me away from the classroom.  So they ask lots of questions about the hair.  Has it started growing back yet?  Will it be red (like I've always wanted)?  Do I have a red, curly wig?  Does the purple wig look natural? 

Instead, I brought a picture book to read aloud and use to discuss author's message.  A lovely book, called, The Snail and the Whale, by Julia Donaldson, it's a sweet story about a snail who wants to travel the world.  The other snails think he's being ridiculous, but he manages to hitch a ride on the tail of a humpback whale (you see this rhyming thing, right?).  After seeing the world's natural wonders, he realizes just how small he is. 

But when the whale gets distracted by speedboats (those rotten humans), and ends up beached in the bay, the snail goes to get help from the children in the nearby school.  They get the whole village to help keep the whale cool and wet until the tide comes in and the snail/whale team are able to swim safely back to the dock.  There are so many positive messages in this story and the kids picked up on almost all of them.  Nobody noticed (and actually, me included, until this most recent reading) that it took a village to save the whale.  The snail was small, but determined and knew when to ask for help.  It really does take a village. 

Thank goodness I didn't cry while reading the story (fun fact: I majored in Children's Literature and still feel pretty good about that decision).  The kids are wonderful and all are wearing (along with the teachers) lime green ribbons (for lymphoma awareness) made by one of my fabulous students.  And yes, I cried when I found out she had done that.  I do feel like they haven't forgotten about me, even though I know it's silly for me to worry about being missed.  Selfishly, I went to school for a 4th grade pick-me-up.  Something about the innocent questions, hearing the important news of their lives, and the smiles on their faces makes me so happy, and I was reminded why I went into this "business" in the first place (cause let me tell you it ain't for the money).

***

At long last, coming up on my last dose of magical poison, I just want to get it over with.  I want to get in there and kick the s*%t out of this tumor.  I am pumped and I haven't even put on Wicked yet. 

xxoo

Body Image

Surprise!

Many women I know struggle to love their bodies, to feel comfortable with their own weight or skin or hair.  I have definitely felt this way ever since at age 11, I noticed my thighs.  I have this vivid memory of sitting at a school desk, looking down at my legs, and feeling like they didn’t look like they were supposed to.

It’s difficult to not process all of the images we are subjected to on tv, in magazines, on billboards, in movies, and feel like we are separate from all of the airbrushing, styling and make up.  We are real and they are not.  To look good is to feel good and vice versa, right?

But what about when you don’t feel good OR look good?  What if your body just doesn’t work the way it’s supposed to?  I know we are all spiritual beings and I must believe we are living in these bodies temporarily, but I want to be happy in mine while I’m in it. 

So certainly I questioned my body and it’s abilities last year when it wasn’t getting pregnant.  And then I questioned it again when we discovered the cancer party that had been going on in my mediastinal region, as though parents were out of town.  (Well, we’re home, kids, and you’d better get this place cleaned up.  Fast.  Because this party of yours is O-V-E-R.) 

I want to be able to trust my instincts and go with my gut and all that, but I’m conflicted.  There are many moments when I doubt myself and feel like my body has failed me.  I imagine others faced with serious medical issues must feel the same way.  I know I must take care of my body while I’m living in it, but I’m not supposed to be too superficial.  Look Good, Feel Better.  Make up clogs your pores.  There are so many messages, so many experts, how, in times of crisis, do we decide who to listen to when we're not sure about what our own bodies are saying to us?

***

Dan surprised me tonight.  Yesterday was our fifth anniversary (and also this summer marked 11 years since we first met) and we celebrated with a delicious dinner at Parc (French bistro in Center City, Philadelphia).  I wore my blonde wig, make up and of course, a sundress.  We had a great table by the open window, got a sparkler in our dessert and on-street parking (free!).  Definitely an anniversary to remember, in the midst of a time in our lives I think both of us want desperately to forget.

Our plan for tonight’s dinner was to eat with my family (and Dan’s parents who are visiting us this weekend) in the sukkah of my Aunt Marcy and Uncle Gary.  For those of you unfamiliar with the word sukkah – it’s basically a wooden structure with branches as a roof (so you can see the sky from inside) that stays up for a week (during the harvest holiday of Sukkot- which commemorates the time our Jewish ancestors were wandering through the desert, living in similar temporary homes).  Judah was definitely excited about it (he’s been singing Sukkot songs for many weeks) and we were all looking forward to socializing with family before my final treatment this Thursday.

What I didn’t know was that Dan had been orchestrating this event for even longer than Judah has been building Torahs out of legos.  With the help of our wedding caterers, he recreated our wedding menu, even down to the dessert (buttery apple tart thingys), which we brought in specially from a café near our then-home in Bella Vista (and which were lovingly hand-delivered by the Adams-Kaplan crew 5 years later).  There were menus printed (to rectify a missing menu mixup from the actual wedding day) and decorated on the backs by Judah B., and some wonderful friends were also there to surprise and celebrate with us.  I was totally speechless (you may have observed that this happens very infrequently) and thrilled with the whole thing.  I definitely feel loved and supported.  If only every person dealing with such crisis was surrounded by people as thoughtful and caring…

To my wonderful husband, I say thank you.  I still can’t believe you got me (I’m surely not on my A game if I let this one get by me), but I’m glad that you did.  I’m pretty sure this was on the list of qualifications.  I can’t wait for us to get on with our lives and to all of the other adventures that lay ahead.

To my family and friends, I say, I could not have gotten this far – with a smile still on my face – without you.  I am forever indebted to all of my blog followers, FB, and real life friends, who have been with us every step of the way, bringing/sending nourishment for the body and soul on a daily basis.  I am both happy to feel strong enough to make homemade applesauce (from our freshly picked bounty) as well as anxious for Thursday to hurry up and get here so we can kick some Round 6 tuchas, and thereafter, enter into Phase Two: Radiation (or, The Zapper).

xxoo

Therapy

I finally had a (much needed) session on Wednesday with a psychologist who specializes in people and families dealing with cancer.  It was just an intake meeting before being assigned to another therapist who I will hopefully meet with next week, before my final chemo treatment.

On the initial paperwork, below where you write your name and all of your important numbers, there was a space for you to write why you were there.  I wrote PTSD?  Cancer?  As in, 'nuff said?  Does there need to be more of a reason than having cancer to see a shrink?

After telling him my whole long saga (starting with struggling to conceive since last January), he asked me why I'd written PTSD.  Like, what have I experienced that made me feel traumatized?

My first response was that I have problems with memory loss.  For example, apparently I participated in a conversation with Dan about postage stamps where I (according to Dan) refused to use liberty bell "forever" stamps and forced him to go back to the post office and buy pretty stamps.  This frightened me for two reasons.  One, that I flat out refused to use the liberty bell ones?  Not completely unreasonable, seeing as how they really don't demonstrate a great deal of individuality or uniqueness, but I'd never actually refused to use them before.  And two, I have zero recollection of this exchange.  Zero.  That's weird.

I continued to explain that I have been extra emotional lately (um, for the past few months?), crying easily and worrying about how even after my scan results are in and I've been radiated, this is never going to be completely behind me.  I will be afraid for the rest of my life (however long that will be) that one day, lymphoma will jump up behind me and bite me in the ass again.

He nodded, and confirmed that my feelings were all truly normal (there's that word again) and that I have every reason in the world to be terrified.  Basically, we agreed that while I'm coming to the end of the first part of my treatment, I still have a lot of work to do in the therapizing department.  And that's not even including the whole fertility project.  So, I gave him my blog address (Hi Dr. M, if you're reading this!) and I left the building feeling a tad lighter than when I entered, looking forward to my next session.  

In the beginning of this blog, I believed this was just a bump in the road and once treatment was over, the cancer would be gone, and I would be cured!  I would go back to my life as I knew it and be stronger for having survived it, but my hair would grow back and I would still be me.  I guess now, it's not that I won't be me, but the bump is less like a change in pavement types and more like a Philadelphia pothole after a long winter:  cavernous and destructive.

I'm wary of people who call certain types of cancers "curable" when caught early (such as a lady on the Today show did this morning).  Yes, you may be able to rid a person's body of all traces of cancerous activity for a time, but that does not guarantee that it may not return.  What exactly constitutes being cured?  According to the Merriam Webster Dictionary (dot com), there are several definitions of the word.  Aside from the one dealing with meat, my favorite is "to free from something objectionable or harmful".  That's the one I'm going to hope for now.  To just be freed.

Tomorrow, my week o' complementary medicine wraps up with acupuncture.  I always look forward to laying in a bright room with flute-y music playing and very skinny needles opening up my chi.  Let's get this healing party started, yo.

xxoo

Changes

Citrus in, bad energy out.

Yesterday I had a lovely massage.  I have been seeing Bridget every three weeks since the beginning of treatment, and before that, I had been going to her on a monthly basis.  When I went in on Monday morning, we sat and chatted for a bit before starting the hour of happiness.  She asked me if I had given much thought to any changes I would make after all of this vicious treatment was over (aside from eliminating plastics, switching my personal products, and eating organic).  She suggested rearranging furniture (which we'd already done in our bedroom, thanks to the chaise), bringing in plants (no cacti), and strategically placing bowls of lemons and limes in different rooms (to absorb negative energy, of course).  It made me think that there are plenty of things I can do right now to make a difference in the way energy flows through my house.

So although I was a bit light headed, and my tummy was continuing to fight its losing battle with food, after dropping off Judah at school, I headed to Whole Foods (our home away from home) and did some food shopping. 

I came home with my citrus fruits and placed one large bowl downstairs and one smaller bowl upstairs (between the bed and chaise).  As I went about the house, tidying up, changing bedsheets and putting away clean laundry, I hoped the lemons and limes were busy doing their thing as well.  With the sun shining through the blinds and a lovely breeze blowing through the rooms, the only thing bringing me back to reality was the clock.  I had to go pick up Judah from school. 

I've really tried, especially on crappy days, to limit social interactions with people I'm not terrifically close with (read: if I have to put on a smile when I don't feel happy, I'm not interested).  And to be honest, even on the phone, I only want to talk to 5 or 6 of my friends and relatives.  While writing about my feelings is often cleansing and therapeutic, verbally discussing my treatment and emotional condition is not easy.  And also not something I am desirous of doing with just any rat on the street.

So while I know (and am heartened by the fact) that there are MANY people who care about me, my condition, my family, etc., I am simply incapable of dealing with the pitiful looks some of them give me, I think (hope?), in an attempt to be sympathetic.  My worries and tears hover right on the edge most of the time,  thus the tone of voice that says, "I can't bear to see you looking like this," is not helpful.  It can't be my job to help others deal with my illness.  I've always had high standards for those I surround myself with, but now my expectations have risen even higher. 

When I go out in public, I am taking on the world.  I am feeling ambitious and I probably want to buy something.  I avoid almost all eye contact (except with sales persons, who are frequently helpful and do not make me feel like a leper).  Because, I have discovered, there are two kinds of strangers.  Ones who stare and glare, and ones who smile.  I can't figure out why some can't take their eyes off of me (seriously girl in the deli on Atlantic Ave. in Ventnor, take a picture, it lasts longer), and others seem to want to hug me. 

Let me say, I do not write on behalf of all of us afflicted with cancer, but simply for myself.  I'm sure there are some cancer patients out there who enjoy milking those pitiful looks or who are able to handle the Spanish Inquisition.  But me?  What do I want when I venture out into the world beyond my doorstep?

I want people to make me laugh.  Make me pee in my pants, begging you to stop.  Distract me.  Point to a butterfly, or my child's artwork.  Talk about the weather or your daughter's wedding.  Tell Judah how big he is and ask him what he learned in school today.

Please don't ask me to talk in depth about my treatment, or tell me how I'm handling all of this with such grace and strength (bwah ha ha!).  If you do, you run the risk of unleashing the tears, and then we're all awkward and uncomfortable.

Don't get me wrong, I do want people to join Team Mia and visualize healthy days ahead right along with the rest of us.  We are an all-inclusive, no-cut team (a little like Glee!) and we're happy to have you!  It's just that it's taken about all I have to get up, get dressed, fill in my eyebrows, and eat something, plus get Judah dressed and fed (and pottied), that I don't have the energy to smile while discussing cancer all the while pretending everything's grand. 

Truly, I do appreciate all of the support that people have given us.  From dinners to goodie bags, to wishes fulfilled (to people who keep checking for new blog posts), I feel so lucky to be in such good company.  I am reassured on a daily basis by the choices I've made in the past, to surround myself with only wonderful people who live up to (and on glorious occasion, exceed) my sky-high expectations. 

xxoo

Look the Part

There's definitely no avoiding it now.  I'm a cancer patient.  Most of my hair is gone (and what remains continues to leave a ring in the bathtub), my complexion is a pale shade of Elmer's glue, my muscles are weak, I spend 10 out of 21 days trying not to be really sad or take my anxiety out on everyone around me and my face lights up at the thought of the physical act of shopping at Target.

Depression is definitely common in cancer patients and given my family history as well as my own personal history with it (I'll save the details for the published version), I am not surprised at how this illness has taken its toll on my emotional well being.  That being said, I surprisingly, did not suffer from postpartum depression after Judah was born (full well expecting to) and had been relatively stable since the post-graduate school episode up until the whole fertility thing began to get out of hand last summer. 

Certainly part of the delay in getting myself diagnosed was that I thought (and others helped to confirm) that I was causing many of my symptoms by allowing my overwhelming emotional stress to overflow into my physical wellbeing.  I wasn't really itchy, it was caused by anxiety.  I wasn't having breathing problems at night, I was just waking in a panic because I couldn't relax.  And a few months ago, my biggest fear was that I would have to go on anti-depressants (to rid myself of these pesky anxiety side effects) before Dan and I could step up our fertility efforts. 

I went in for an itch prescription and came out with cancer.

Knowing now what I did not know then, I feel a great deal of relief that my inability to relax wasn't causing these bizarre symptoms.  But of course, on the other hand, no one knows what did cause them.  Or if once they're gone, they're gone for good.

I just finished reading Rebecca Gifford's Cancer Happens. (Are you sick of this yet??  I know I am.) She was diagnosed with NHL at 22 years old, had chemo and radiation, then 3 months after being told she was cancer free, relapsed and had a bone marrow transplant.  She was not told about the fact that a transplant would leave her infertile until just a few days prior to the procedure, leaving her no ways to preserve her fertility.  Only once she got married, and reached that point in her life where she felt the sting of not being able to carry or produce a child with her husband, did she begin to face what that meant for her emotionally.  She writes a lot in the final chapters of her book about survivorship and tips for how people unafflicted with cancer can best allow them to feel comfortable and "normal". 

So I have been thinking ahead (better than being stuck here in the present) about finishing chemo, moving onto radiation, being/becoming a survivor and returning to my life, where, as Jon Stewart so eloquently reminds me, I have shit to do.  The past few months have been like a war zone in my body and I am certain I will require some major therapy for PTSD when all is said and done.  I wonder about the long term side effects that I now read about (food allergies?  early menopause?  low immunity?) and which ones my body will creatively confront me with. 

Like I said, I like to be prepared.  So since I already know what to expect over the course of the next month, I'd better start preparing for what comes next.  I've been researching radiation oncologists and will hopefully have an appointment or two set up for the coming weeks.  I've contacted the township (yes, AGAIN) to simply move the marching band practice location for my (hopefully final) days 7-10 (is that too much to ask?).  I am signing Judah up for a kidnastics class that runs for 10 weeks, starting in October and we (at LONG last) got rid of the smallest, dirtiest, furriest poop machine that invaded our house earlier this week.  Sounds like I'm ready to just jump back in the game, right?

Well, yes, kind of.  I'm torn.  I am not the same person I was a few months ago.  That doesn't mean I know who I am now, I just know I'm not the same.  Every fear I ever had about something bad happening was validated.  Okay, maybe not every single one, but certainly a lot.  I'd never had worse than the flu before, never broken a bone or been in the hospital.  Even getting pregnant with Judah was a breeze.  And since we'd been trying for #2 for so long already, this bout with cancer just feels like one more giant brick wall dropped in front of me, preventing me from getting to my goal of just having a regular healthy family.  So, that?  The regular, healthy family thing?  That is what I'm ready for.  I know I can't erase the past few months, but a large portion of my brain - the part that keeps me from throwing a temper tantrum every day - really wants to just forget being sick.

The worst part (ok, not the worst, but it definitely qualifies as annoying) is that I haven't actually been sick, right?  All of this feeling like crap?  Is from the chemo!  I never felt a fraction of the crappiness, physically, before my diagnosis.  Itchy?  Yes.  Frustrated?  Yes.  Sad?  Yes.  But this chemo stuff... Dude, it brings crap down to a whole new level.

After depressing myself by catching reflecting glimpses of my head on the iPad, iPhone, and tv screens (I try to avoid the mirrors altogether), I have come to the conclusion that covering the baldness might not be so bad.  Maybe I'm traumatizing myself (as well as Judah) by walking around uncovered all the time (when I say walking around, I really mean laying about). 

So in preparation for the new normal, set to make its appearance in a few months, I am going to try to look a little less like cancer and a little more like me.  You can probably imagine that I am typically decked out in mostly purple (when the good stuff is clean) and sparkles whenever possible.  But I haven't really put on outside clothing for the past week and a half.  In the beginning of treatment, I made an effort to get dressed every day.  In something I could be seen by more than my immediate family.  But slowly, I stopped caring about looking like I was trying.  I just wanted to be comfortable.  Don't get me wrong, I've been bathing regularly, it's just that when I get out of the tub, I put on clean pajamas, regardless of the time of day. 

Today I vow to get dressed again.  I will put on leggings and a dress.  I will get gussied up to go down to the couch.  I will sit out on the porch for my extra vitamin D and I will look good doing it (easy for me to say now, it's Day 10!).  When the delivery guy comes, I will try not to scare him with my puny eyebrows, but I will show him my glittery cheeks and smile as I inhale the smell of grease and cheese...  Look out, Survivorship, I'm on my way.

xxoo

Cancer Claws

I'm not supposed to let this dispicable cell malfunction get to me, right?  I'm supposed to be strong and calm and composed and focused.  Use vivid imagery to propel me towards the future, where I am smiling and healthy, and I have hair and I am happy.

Except it's not all that easy.  There are days when I just want to cry from nothing.  My stomach makes such loud noises, we cannot carry conversations overtop of it's interrupting moans, whines and kicks.  My body hurts from trying to decipher between the good cells and the bad ones.  My body is fighting so hard just to keep everything from shutting down.  After seeing what gets injected into my body every 3 weeks, I would definitely call that a miracle.  But I don't feel miraculous.  I feel mad.  Angry at the jerk who is revving up his stoopid (yes, STOOPID) scooter engine and driving around my block 9 times.  Annoyed that people on TV have long, flowing locks of hair and I barely have my eyebrows. 

Deep breath.  In.  Out.

There are two authors (and my iPad) that have gotten me through these past few days?  weeks?  I've lost track of time here...  The first one is Jen Lancaster.  Thank you, Apple, for making her books available on iBooks.  I have read the first 3 and can say without hesitation, they were written specifically to dig me out of my misery hole.  I read (in the dark, since the iPad has plenty of lighting) and giggle, shaking the bed until my eyelids are forced to close, thanks to the magic of modern pharmaceuticals.  She is hilarious, and I dare say, heroic in her ability to distract me from the full-time intensity that cancer has brought into my life.

The second author whose book I keep returning to for a different kind of therapeutic response is Joni Rodgers.  Unlike Kelly Corrigan (of The Middle Place and breast cancer), who, while an incredibly talented writer, made me cry more than laugh, Rodgers wrote about her adventures with NHL with such humor and reality, I wanted to read the whole thing aloud to whomever was sitting next to me.  (My mom got to hear most of it during our Girls' Beach Day.) 

What I love most about her book, Bald in the Land of Big Hair, is that (aside from coming up with more words for vomit than any thesaurus in existence) she just made me feel better.  She didn't scare me or unnerve me with her fears (which were still very similar to mine), but she kept plugging through the whole stOOpid chemo until she was done.  Her daughter gave her Barbies Bleo Boosters (like my Neulasta shots) and her son had meltdowns and typed a story on her computer called, The Queen Has Cancer.  She writes about her relationship with her husband and sex and all kinds of other real things that cancer patients confront, like nurses who are in the wrong profession, or passing out in the grocery store (when she shouldn't have been out of bed). 

There are so many passages from her book that I'd love to share with you, but I'm sure that would be illegal.  Tonight my favorite one is from the part where she meets with her oncologist and (finally) receives a diagnosis and treatment plan:


Plainly and in detail, she outlined the agenda for the destruction of the world as I knew it.  She didn't seem to be in a state of panic.  She didn't appear to be sorry for me.  She didn't seem to notice I was in the process of being smote by God, a pathetic little dinghy on the storm-tossed ocean of ill fate.
      "I guess this is all in a day's work for you," I snipped.
      "Yes," she nodded with a small smile, thinking perhaps that I'd meant to compliment her or maybe even that I would find it reassuring to know that I was just another Chiclet in the great masticating maw of industrial medicine.
     "These may be of some help," she said, handing me a stack of booklets and pamphlets.  The first one, the publication of which had been generously underwritten by (who else?) a pharmaceutical company, was delicately titled Chemotherapy and Me.  I stared at the medicine-colored cover.  Chemotherapy and me?  Chemotherapy and ME?
     No.
     No, it should be Chemotherapy and Somebody Else.
     Chemotherapy and People Who Deserve It.
     Chemotherapy and Telephone Solicitors.
     Chemotherapy and People Who Talk During Movies.
     Chemotherapy and Girls Who Made Fun of Me in High School.
     Not chemotherapy and me?

***

Any of you who read my previous blog post will know that my point of view on this whole who-deserves-to-have-cancer thing has morphed a great deal over the past few months.  Certainly in the beginning, I felt much the same way as Joni Rodgers.  And throughout the roughest days (6, 7, and 8 up there with the worst of them), I often return to that place.  It's the only way having cancer makes sense to me.  If cancer has to exist, shouldn't this be a weeding out process?  I could list a whole host of reality TV stars that might benefit from a little taste of cancer, or some nasty tailgating drivers we've encountered on one of our many PA turnpike trips that could use a close brush with death. 

It's really, really hard not to go to that why me place.  It's not fair (blah, blah, blah, life's not fair) that some people get dealt a bad hand, while others float blissfully through life, close enough to hardship to think they can relate, but far enough away that it doesn't apply to them.

I've never really been an optimist, though.  I appreciate the beauty of being prepared for everything that could, might and will most definitely happen in the near (and distant) future.  My purse is consistently packed with snacks, extra clothes, wipes, pens, lip stuff, stickers, membership cards, water bottles, you name it, I (almost always) remember to bring it.  I plan for the worst and then unpack my bag once we get home.  And although for years (ask Dan, it's true), I've been waiting for something bad to happen, I never, not once, for a moment's pause, prepared for this. 

The good news about today is that Sarah Shourd (one of the 3 Americans being kept unjustly in Iranian prison for over a year) was finally released and reunited with her mother.   Joining in as a "Free the Hikers" supporter (even if just on FB) has helped to keep things in perspective.  I may not have my health at the moment, but I do have my family and friends around me.  I have a happy chair and a happy little boy, and only one more round to go.


xxoo

Glowing

Uncertain if I'm glowing from the poisonous dose of chemo 2 days ago or from my international television debut last night.  For my own peace of mind, I'm going to go with the latter.  Last night, I gathered with my husband, my parents, Judah, and Auntie Rae Rae to watch the much anticipated SU2C telethon on the small screen (in my bedroom), visible from the legendary chaise.

We prepped Judah in advance that he wasn't going to be getting much attention during this hour, as all the grown ups wanted to watch an important show, but that he could get in his pj's and stay up late until it was over.  Luckily, Rachel brought over a bucket of goodies for him to busy himself with during the first half of the show (including doodling all over his left hand in black marker because no one was much interested in him for all of 60 consecutive seconds), and we put I Heart Big Machines for him on the portable DVD player with headphones (life-saving technology for all of you who have not yet had the pleasure of flying cross country with a 2 year old) to enjoy the rest of the show without commercial or Judah interruptions.

Having attended the first telethon in person 2 years ago, I already knew it would be a cry-fest.  Even then, BC, I could surely empathize with people who had undeservingly lost loved ones or fought the loveless bastard themselves.  Having lost my aunt to glioblastoma in 1998, my uncle (a long time Hodgkins' survivor) soon after, and then my paternal grandfather to colon cancer, I had been "touched by" cancer.  But of course now, I have a completely different perspective on the whole damn thing.  Deep in the fight myself (and disappointed that I was unable to attend this year's show), I can see with clarity the need for targeted chemo, for clinical trials, for patients to get the care they need - quickly.

As written by my amazing brother and machatonim, Laura Ziskin (along with other talented writers who I'm not related to) cancer doesn't care what is going on outside of your body, in your daily life.  If left misdiagnosed or untreated, it moves fast and furiously to destroy all that is good and normal on your insides.  It doesn't care how much money you have (or don't have) or how your child needs you (no matter his/her age) or what your dreams or plans are for the future.  Cancer is pure, rated R evil.  And we must put an end to it once and for all.

I was inspired by my brother's words, spoken by good ol' Denzel Washington, reminding us of all of the fights already fought and won by the brave leaders before us.  It is up to us to take drastic measures to change the medical world for not only our own chances of survival, but for our childrens' chances and beyond.  I am so thankful that Laura (the only person I know with the gusto and production experience to spearhead such a powerful hour of television) has been so relentless and proactive in moving mountains to raise money and awareness on behalf of all of the current and eventual evil fighters in the world who deserve to live long and healthy lives (and in memory of all of those who courageously fought and lost).

I distinctly remember thinking (and saying) a few months ago, "Why me?  Why didn't this happen to ______ and then I could be making her dinner and sending her cards and packages?  Why ME?"  But by now, my question is, "Why anyone?"

Not that I don't still have those self-pitying moments when I can't imagine what I did to bring this upon myself, but I have most definitely come to the conclusion that no one should have to go through this: debilitating treatment and side effects, families stressed and (occasionally) medicated right alongside the patient, hundreds of good-hearted friends lending their own precious time helping out, trying to lift the spirits of, and pitch in and do the countless jobs of just one typically overachieving working mother (or father or daughter or son).  I'm going to take the high road here, leaving all murderers, rapists, kidnappers and the like out of this conversation on the assumption they have all been cursed by some kind of mental illness or abuse that would lead them to commit such immoral and inhumane acts of indecency.

As for the rest of us, we are all innocent.  Many of us were raised in loving homes, by parents who fed us well (fresh fruits, vegetables, and lots of books - I didn't even know what a potato chip was called until kindergarten), expected us to graduate from college, and taught us to go out in the world and do something fulfilling and productive.  So it's up to us to make this happen.

A big fat thank you to my baby brother, Eli and his wife, Julia, who played instrumental parts in the writing, planning, and execution of last night's extravaganza.  And also to Laura, who, aside from giving me valuable chunks of chemo-surviving advice, I can honestly say has inspired me (and I'm the one who entitled a previously written post:  Inspiration, Shminspiration) to make some good come out of all of the crapola that is cancer.

***

As for my fifth round of chemo, it's, well, it's going.  I came downstairs today, so that must be a good sign, although my legs continue to shake on the steps.  I've consumed no fewer than 3 bowls of black cherry jello, all topped with (organic) whipped cream, some of those potato chips I now (unlike during my pre-K days) have a close personal relationship with, and a few of my usual over-medium eggs.  Not a great day, eating-wise, but perhaps tomorrow will be better.

There is a light at the end of this tunnel: 1 more dose of R-CHOP to go.  With or without a window seat (thank goodness for all of us, this past round was "with"), I have just one more to get through before my scans.  And then the radiation chapter begins.

Although this journey is far from over (do survivors really ever consider themselves finished with cancer?), we're certainly closer to taking my life off of the hold button and getting back to doing more than healing (not to belittle the crucial work being done by my vital organs, platelets and t-cells at the moment).  We are closer now than we were 3 months ago, the seemingly endless summer coolly drawing nearer to fall, a Jewish New Year upon us (5771 for anyone wondering), filled with hope for good health, happiness, and of course, a cure.

xxoo

Any Questions?

Today being my strongest and healthiest day of the cycle, I went to visit my students at school.  My main goals were to sit and talk with my kids, reassure them that I was indeed going to return in due time, and attempt to answer their questions.  Secondary goals were to see my fabulous friends/co-workers, thank people for their support and wish everyone a Shana Tovah (Happy New Year for all of the non-Jews reading this).

First, I dropped Judah off at school, where he proudly told the preschool director I had no hair and did she want to see under my hat?  Thankfully, when I left him with his friends there were no tears (on his end), and I drove my usual route to school.  It was so bizarre to be running through such a familiar routine but under such foreign circumstances.

As always, I brought lots of stuff with me (you gotta know by now how much I love stuff), new books for my library, new stamps and crayons for the room (with a new ink pad, special for you, Chris), and of course, 32 individual bags of white m&m's (with lymphoma lime green pipe cleaners as twistie ties to keep them closed).

I was truly happy to see all of the familiar teacher and student faces (I have the same students as last year - called "looping" for you non-teachers) and a few new ones, recently added to the bunch.  It felt good to be on auto-pilot, looking for the kids who were supposed to be wearing glasses or hearing aids (and who, as usual, were not wearing them), giving hugs, smiles and winks all around.  In the car on my way there, I was concerned I might not be able to have a serious talk with them without tearing up or becoming emotional (I ALWAYS cry at the end of reading Charlotte's Web aloud and throughout The Keeping Quilt, so it wouldn't be the first time the kids had witnessed a Mrs. Blitstein downpour).  But when the time came to tell them the facts, I totally kept my cool.

I rewound time and started the story back at the last time they'd seen me, in June.  I introduced them to new vocabulary words like biopsy and lymphocyte, chemotherapy and neutropenic.  By far and away, the best reaction I got was when I  revealed (whispering for full effect) that the medicine I had to take was so strong, it made my hair fall out (collective GASP!).  I tried to explain everything on a 4th Grade level, and gave some of them a chance to share their own scan experiences with us or a partner, but I got stuck trying to come up with another word for metabolize (I'm open to suggestions).

They seemed okay with the fact that NHL actually meant cancer (I tried to beat around the bush, but when I was asked outright, I couldn't lie), and that as long as I was still me and I was going to come back, they would be alright doing the school thing without me for a little while.  But they did want to know exactly when I would be back.

"When will you be better?  Like, in a week?"

"No, it's going to be a little longer than that..." I answered.  I began to map out the timeline of the next few months, with my final 2 rounds of chemo, scans and potential radiation.

"So, like, four months??"

"No, less than that.  When Dr. Henry says I'm all healed inside.  If I have to use all of my energy to heal, I won't have enough left over for you people.  I'll know more tomorrow, when I speak to the doctor."

They seemed satisfied with that response and I thought I had fielded their queries like a pro.  The last question (it was time for Science prep) was definitely a perfect grand finale.

"What causes this?"

He might as well have asked how Stonehenge was made or if other life forms exist in the universe.  My response to all of these (and others...) was the same.

"We don't know.  Scientists have some ideas, but we really just don't know."

And as disappointing as that anticlimactic answer was, it was a perfect opportunity to plug the SU2C telethon this Friday at 8 pm (EST), on all major networks.  I described my link to the organization (the fact that my brother's mother-in-law produced the Spiderman movies quickly got their attention) and told them to tell their parents to tune in.  It's not really a children's show, but I'm sure they will all still be awake (one child asked if it would be on the Disney channel) and in front of the television if their parents remember/decide to watch.

***

For those of you non-Facebookers (is there anyone left?), I am thrilled to report that Judah's urologist loved his scans and gave us all a big sigh of relief on Tuesday.  Judah will not need another check-up until next summer (just an ultrasound, or as we call it, jelly on the belly, and no more scans!) and after that, he can go two years before his next appointment!!  Just one more hurdle crossed over in the summer of craziness.

Tomorrow, instead of participating in the traditional Rosh Hashanah services, I will be visiting with Dr. Henry, and offering up my port to receive my fifth (that's 5th) round of the beloved R-CHOP.  While I'm there, I will set up an appointment for my LAST round of chemo (...and the crowd goes wild!!!!).  Aside from the tough and feisty white m&m visualization, I imagine myself as the little blue engine from the old classic, and coincidentally, Judah's newest Book of the Week, The Little Engine That Could.  I know for a fact there are those who faced cancer before me who were big and shiny, or strong (read: athletic) and powerful, old and rusty, or just unkind.  But as a children's lit major (yes, there is such a thing), and of course an elementary school teacher, I do firmly believe in the power of simplicity.

I've never been over this mountain before, but the good little boys and girls on the other side need toys to play with and good things to eat.  By 10 o'clock tomorrow morning, I'll be chugging and puffing my way there.  I think I can, I think I can, I think I can...

Shana Tovah - Happy New Year - I wish you all health and happiness (which I've recently discovered are very closely related) in the coming year...

xxoo

Smokin'

Note the double scalp protection...

Yesterday was the most glorious day of the year.  A cool 70 degrees (perfection in Philadelphia), with sparkling sunshine everywhere.  Lucky for me, I got to spend it on the beach of Ventnor, NJ (thank you Joyce!).  Dan volunteered to spend the day with Judah B. while my mom and I packed up only our own belongings and headed down the shore for some peace and quiet, some R&R, a day of de-stressing before the madness is to begin again on Thursday.

Well, we arrived at the beach around 12:30 pm, and by 1 o'clock, we had already moved our chairs twice.  The first move was due to the irritating and meaningless chatter of someone's (sports talk) radio (haven't you heard of headphones, people??).  The second move was to find a spot upwind of some lovely lady's second hand smoke.

When we finally arrived at our third (and I was insistent, final) destination, my hound dog nose quickly picked up the scent of a nearby cigar.  Starting to lose the cheerful and relaxed state of mind I had come here for, I was ready to pull off the bandana/sunhat combo I had going, to shove my bald head in someone's face.  JUST LET ME SIT IN FRONT OF THE OCEAN AND READ MY BOOK AND MIND MY OWN BUSINESS AND NOT BOTHER ANYBODY!!  I wanted to scream. 

My mother, occasionally more diplomatic than I, went up to the offending cigar smoker and explained that her daughter had cancer and would he please mind smoking after we left (knowing full well we were settling in until dinnertime)?  He was kind enough to put out his cigar, only requesting that we let him know when we leave so he can light up again.  Just for the record, I did go over and thank him myself.

Now let me say to all of the smokers out there - you have every right to smoke.  Everyone (that's not a direct descendant of mine, of course) has a right to do with their bodies what they wish.  If that means drinking your liver into oblivion or smoking tar into your lungs, so be it.  I'm not here to try to get anyone to quit.  What I am here to say is you don't want to have cancer.  Trust me.  You really don't want it.  And if all it took to lower your chances significantly of leaving this earth (or suffering through chemo) before you're good and ready is to just NOT smoke, maybe it's worth it to give quitting a try.

On the flip side, as a non-smoking, undergoing chemo cancer patient, I have zero interest in breathing in any more toxins than I already have.  I won't go into the details of where the vent in my classroom (2 years ago) sucked it's "fresh" air from.  I do not want to put myself at further risk by ingesting additional air pollution.  If I am offending any of my smoker friends, I am sorry, but I wouldn't wish this cancer experience on my worst enemy.  (Well, maybe I could think of one or two people... no, no, really, just kidding.  I think.)

This poses a problem.  People have a right to smoke their cigarettes.  But I have a right to clean air, to be healthy, to have the best possible prognosis.  What is the solution?  Do we have a smoker's beach and a non-smoker's beach?  Put a line of masking tape to divide the two?  What happens when the wind shifts?  What happens when smokers and non-smokers want to play paddleball (I'm envisioning the ball sailing back and forth over the border...) or sit together and talk by the edge of the water (my chair on one side of the tape, yours on the other)? 

I'm not trying to segregate, here, just maybe tell it like it is and hope that people want to avoid this experience badly enough to quit smoking.  Or at least quit smoking near non-smokers.  Honestly, I already feel as though there's a black cloud hanging over my head.  I don't need a real one.

Cigar man having been so kind, we managed to enjoy the rest of the day with little to no further smoke issues.  There was that same woman (from whom we moved the 2nd time), whose smoking friends had come to join her.  At one point, my chair was facing hers in an effort to give my sensitive skin a break from the sun, and I (with my mother's permission) removed both layers of head coverings to show her what her head could look like in just a few short months.  After my 45 second timer (also my mother) went off, I was forced to cover my head again, for fear of a reflective burn on my scalp.  But it did feel good to show off my bare noggin, my badge of honor for the fleeting moment, in an attempt to change someone's future.

***

Tomorrow, I take Judah to the urologist to review his scans from last month.  I will then drop him off at school for a few hours so he can play with other children once again.  Hooray for organized, structured, goal-oriented pre-school!  Please, wear my kid out!  I will then bake banana bread and try to finish as many thank you notes as possible before Wednesday, or the Eve of Day 1 (again). 

Today, I'm putting off the thought of starting all over again and just enjoying that I still have 2 more days of semi-normalcy, good range of motion, an incredibly loving husband and son (and doggie), fantastic parents nearby, sparkly toenails, most of my eyebrows and eyelashes (just putting this in writing is like taunting the follicles, daring them to drop).  And in the mirror yesterday, I swear I found some hairs on my head that are longer than others.  Some hairs have grown!?  How this is possible, I do not know.  But I have two witnesses who saw what I saw and concur, this whole chemo thing is without a doubt, the weirdest thing.  Ever.

xxoo

To Read or Not To Read

Lovely Lunch

That is the question.  I know not to google.  When one googles, one loses the ability to filter out the words one never wanted to read in the first place.  One cannot unsee what has already been seen.  So when one searches for information, one may come across lots of sad (perhaps unrelated) personal stories that stick in one's mind.

But what about the related stories?  Doesn't one want to read the autobiographies of the survivors?  To be able to relate to someone else's experience of diagnosis, treatment and recovery should be helpful, right?  Well, maybe.

I am currently struggling with this book, The Middle Place, which is Kelly Corrigan's story of the time in her life when she was between childhood and adulthood - a married, parent of 2 girls, but still not quite grown up, and she was diagnosed with breast cancer.  One side of my brain tells me to just avoid breast cancer stories altogether (since a)I don't have it and b)they seem to be the most depressing), that I am much better off with hysterical (but clever) Jen Lancaster books that keep me awake but distracted, giggling late into the night.  The other side of my brain (the same side that rationalizes buckets of caramel corn) wants to stare at the accident by the side of the road - to see for myself how gory someone else's adventure got.

The trouble with the book is that because Corrigan articulates so sharply many of the thoughts that have run through my brain that when I'm not reading it, I'm thinking about it nonstop, trying to digest the fact that my overwhelming fears (just like hers) are real.  That wanting to take pictures and videotape real life as evidence of my own presence just in case my child needs to see us together one day in the future is not unrealistic. That I'm not sure if I'm more afraid for the people around me that could get left behind, or pissed that I might not get the life I always expected to have.  And mostly, I'm afraid that there's so much we don't know about what's to come.  Any of us - we just don't know what tomorrow or next year will bring.

There is an inner dialogue that goes something like this:
Me:  What if I am forced to leave him too soon?

Other Part of Me:  That's ridiculous.  We know the chemo is working.  The itching is gone, the swelling is much better, the scans were all in our favor.

Me:  Fine, then, what if it comes back?

Other Part of Me: Like almost everything in our life, we can't control that, so why bother giving it airtime?

Me:   Because I like to be prepared.  If I have a heads up now, if I'm always ready for it, when the time comes, I'll be ready.

Other Part of Me:  You can never be ready for cancer, no matter how much of it is living inside of you.  Stop wasting energy and moments worrying about more of it when you are living here now and have the opportunity to love and think and create and sing and do and be and move like you always have.

Me:  Okay.  Sometimes I just need to be reminded.

Do I keep reading the book?  Do I bother with the other 2 cancer books (lymphoma survivors) sitting on my nightstand?  Will they help me through this or just make matters worse?  And if these books are not for cancer patients, who is the intended audience?  Suckers who are in for a good cry - or just supportive friends and family of the author?  Would I have wanted to read this book 3 months ago?  I know most people have been touched by cancer in a close and personal way by now, since 1,500 people die every day from it (I'm pretty sure that's in the USA alone).  But does that mean everyone wants to willingly give themselves puffy eyes and a heavy heart from reading a human story?

I know there is some kind of happy ending to this book because it's a memoir.  Corrigan made it through this bump in her road and lived to tell (and publish) the tale.  Should she suffer from a recurrence, her girls will have loads of pictures, videos and books - all taken and written P.C. (post cancer) that commemorate their disease-free, normal lives together. 

***

I guess the answer is "to read" because I couldn't help myself and I finished the book.  Did she get everything she ever wanted?  No.  She has 2 children, but always wanted 4, and she may not be able to have more babies when her hormone treatment (which continues for 5 years post chemo/radiation) is complete.  But the good news is that her story's not really over because she's still living.

After writing all of this, I feel cleansed, but also kind of silly for letting this book get me so emotional today (ma nish-tana ha lilah ha-zeh? or what makes this night different?), but it really touched a nerve.  I even kept typing intensely when, after his bath, Judah cheerfully paraded downstairs naked to show me his tushie.  He turned around and farted.  Not quite at me, but in my general direction.  How could I not live in that moment (especially seeing the shocked look on his face)?  All that time I spent "digesting", I was doing what I vowed (mostly) not to do:  cry during the good days. 

I think I'm back on track now, having enjoyed two-thirds of a glorious September day outdoors, crepes for lunch with wonderful friends, and a cup of tangerine orange zinger with dessert.  The proud new owner of a stunning plum (p)leather pocketbook, I'm about to give myself a purple sparkly pedicure and watch some missed episodes of 30 Rock on my iPad (whose screen is now adequately protected and body cloaked in a fantastic purple cover, completing the violet takeover, since the purple iPhone skin also arrived in the mail today).  I can't explain why purple feels good, it just does.  If I've learned nothing else from all of this, it's that I can and should trust my instincts.

Tomorrow, a visit to the Atlantic Ocean with just my mom and some juicy reading material (I think I'll go with People magazine just to take a break from the heavy stuff).  Coming soon: tales of the Employee Health Services people (some very open to helping, others not), my trip to Paper Source, continuing to plan for the kitchen remodel (perhaps we really are cuckoo bananas for doing this right now), and finally, how to best cope with "having a moment" in public.

xxoo

Bein Bald

Bald, but happy, in the chaise with the iPad.

I miss my hair.  I really do.  All of the times I complained about how thick it was and how much time it took to straighten?  Truly regrettable.  The B.C. pictures on the walls - not just of the days when I was young and innocent (like in April) or blissfully happy (my wedding day), but of the years of my life preceding this one, when my head was covered by the hair my genetics prescribed - are suddenly hurtful reminders of what I no longer have.

Yes, it's temporary.  Yes, it's a small price to pay for staying alive and preserving your person.  But it's hard to feel like yourself when you look in the mirror and you don't see yourself. 

In the beginning, I remember thinking the hair loss would be the least of my concerns.  I brushed it off, procrastinating the acceptance of what was to come.  I even (as I'm sure every single cancer and chemo patient in this history of forever has thought to themselves) went so far as to rely on the hope that I would be one of the lucky ones who, since she had double her fair share of hair to start with, wouldn't have noticeable loss.  Yeah, not so much. 

First, I cut it Mia-Farrow-in-the-60's short - voluntarily - to gain some control over the situation.  Needless to say, I was medicated.  Thus, the experience was even somewhat pleasant.  Then, a few weeks later, when I began to shed on every surface I touched my head to, it was time to go a bit shorter.  My mom took me to her hairdresser, who had done this before for others (with the buzzer and cancer and all), and we both watched as I lost what few centimeters I had left.  It was almost an out of body experience.  With tears streaming down my cheeks, in the reflection of the mirror, I saw someone looking back at me I didn't know.  I certainly wasn't her.

Still, it was just buzzed.  It wasn't gone entirely.  I still had a lot of coverage, and while at first, I was imagining myself as GI Jane, Dan thought I more resembled Natalie Portman in V for Vendetta.  My head (thank the Lord), it turns out, is not as big as we'd always joked.  Maybe Giada de Laurentis' and Giuliana Rancic's heads aren't as big as they appear either, under those voluminous locks.  And the shape is much less bumpy than I would've expected.  Musta been all that thick hair that busted open the only swim cap I ever dared to try on.  Yeah, it was my hair that always caused a red line to appear on my forehead whenever I tried to wear sunhats (it's like they cut off the circulation to my brain).  Now, my old hats are too big (I graciously gave my old Phillies hat to my brother since he still has the Dansky hair)!

See my former hat?  It's just turned around backwards for the concert.

Next stop:  little bits of your buzzed hair are left behind in a Hansel and Gretel type trail.  You can tell I've been somewhere (not because I've carved MIA WUZ HERE - GL '93) by the stubble sprinkled across pillows or coating the bottom of the bathtub.  Now we're getting into missing big patches on the sides of my head from all the time spent with my head on a pillow.  The back is gone, too.  Just some fuzzy, dark patches remain on the crown of my head.  They're good and stubborn and I love to run my fingers over them, like they exist purely to make sure I have something to hold onto, even if I can't pull it back in a ponytail or push it behind my ears.

I will definitely sport this for Halloweens to come.

Generous survivors have passed along (I'm sure with glee in their hearts) the head coverings they used during their own hair traumas - sun hats in every color and fabric (some even with an odd wire inside to stretch the fabric, keeping your face and neck covered), silk scarves with intricate designs, solid knit caps, familiar bandanas, wigs... The bags seem bottomless.  From them, I've chosen the softest, most breathable preventions of sunburn, and purchased a few interesting choices of my own (including the fantastic purple number pictured to the left).  But the easiest and quickest way to go is free style, scalp open to the cool breeze of the air conditioner and the (usually) gentle hands of my loved ones who enjoy feeling it themselves.

Judah is even weirded out when I put something on my head, I spend so much of my time billiard ball style.  Like, I must be going somewhere, because at home, my head is generally naked.  He was in the car the other day and I was wearing my (new favorite) Life is Good hat.  From the back seat, he remarked, "Mommy, you don't have any hair!" as if he was just noticing for the first time all over again. 

There are days I'm distracted enough by other goings-on that I forget about my baldness.   I wear a bandana or my favorite hat (plus sunglasses - helps avoid eye contact with old acquaintances I'd rather not catch up with) when I leave the house, but then the looks I get from strangers flash me back to the present.  Or this afternoon, when I cleaned the kitchen like a madwoman on a rampage (sans online manifesto), tidied up the living room, reorganized my pocketbook, and it wasn't until I caught a passing glimpse of myself in the mirror that I remembered why I wasn't at work today with all of my colleagues.


So I'm not at work.  But I am here.  I'm here taking advantage of every single moment.  Even if it means crying when I sing Judah a song before naptime or exploding with glee when I discover a package from amazon has arrived.  I (mostly) refuse to waste a minute of my good days crying over the sad possibilities of the future.  Like Jennifer Aniston said in her People magazine interview last month (let me note here I can't believe I'm quoting Jennifer Aniston OR anything written in People magazine, but it was such a bizarre ending to this article, it's stuck with me), "Who knows?  I could get hit by a bus tomorrow." (I'm only slightly paraphrasing.)

I wonder what my hair will grow back as.  Will I be a redhead like I always wished?  Or maybe I'll get back the curls I lost after I was pregnant with Judah.  Or maybe, it will be like my friend's mom, who, after chemo, found she didn't even need to blowdry her hair anymore, it was so straight, silky and soft all on it's own.  Not bloody likely, but a girl can dream.  I'm anxious to get started on the regrowth stage.  I know this experience has changed my personality and perspective in very permanent ways (how could it not?), but I'm curious to see how it's changed my hair, too.

xxoo