Ready, Set, Appreciate

Tomorrow's the big day: the third and final Team Mama Mia Appreciation Day (of 2010). In honor of the day, I wrote 25 thank you notes today, which I realize will not reach most recipients tomorrow, but makes me feel as though I expressed my gratitude in time for tomorrow.

I do truly want to thank so many people who have been on this shooty-shoot road with me since May. This is no particular order.

1. The objects: iPad, iPhone, bare minerals mascara, Jane Iredale moonglow bronzer, leggings and aaah, my warm ugg boots. Purple nightgown, happy chair (chaise), paper source in suburban square, dyson vacuum, electric kettle, and my beloved Harry Potter. Couldn't have done it without you guys.


2. The dinner peeps. You are some of the best cooks of the tristate area and beyond. We have been well fed, comforted and loved by you on a regular basis. From quinoa to kale to homemade soup to shabbat dinners to Christmas cookies galore, we did not, in our wildest dreams, imagine such generosity of spirit when we asked for culinary help. You have relieved stress and helped me look forward to mealtime again. My only concern is that Judah now asks, "Who's bringing dinner tonight?" in place of, "what's for dinner, mommy?". Oh well.

3. My friends. I only hope that I can be as good of a listener when it's my turn. I will try my best to remember as many dates and appointments in other people's lives as my friends have paid attention to in mine. The cookies, the cards, the phone calls and emails - even though I wasn't always able to chat or write back, just knowing I was being thought of truly did help me to feel less alone.

4. My family. Whenever I start to feel pitiful and ask myself,"why me?" I turn around and find the army that is my family (extended) behind me, and I realize how lucky I am to have such incredible support from all directions. Just the mere mention of the need for caffeine sends loving aunts over with instant coffee. The writers I'm related to are usually the first to comment and lavish praise over my writing (maybe because we're related, but who really cares?). They send soft and mushy foods along with hugs and kisses. They text me and leave me happy messages cheering me on, even calling from around the world.

5. My child. Even as I type this I begin to sniffle. Although today you wouldn't have known how thankful I am for him (HAD to leave house. ALONE.), I know I am one lucky mama. I had a part in making the finest little boy I've ever known - he's loving, smart, friendly, clever, expressive, and oh so dramatic. His smile lights up a room and there is no one I know who doesn't smile right along with him. "Mommy? I'm so glad you're home!" Music to my ears.

6. My husband. Aw, poor guy, he takes the brunt of my every mood (and usually doesn't benefit from the good ones), takes out the trash, pays the bills, AND goes to work every day. As if being married to me isn't enough of a full time job. Daniel, I'm so glad you're home. I will never forget the day I knew it was going to be you (even if it took you a little while longer to figure it out). I wish to the moon and back that we didn't have cancer in our lives, but I'm so thankful you're here to kick it out with me. You are the best husband I could ever ask for, even though I don't say that enough. Olive juice.

I'm sure I've left someone or something out, so when the book comes out in hardcover, you'll have to read it all over again to look for the new stuff. Can you imagine there are things I didn't blog about?!

In the spirit of appreciation, I of course must thank my doctors, nurses, patient coordinator, acupuncturist, massage therapists, aesthetician, chiropractor and even for all of the other special people dealing with or surviving from Primary Mediastinal Large B Cell NHL. Words cannot express how grateful I am to live in a time of advanced medicine (but we can still do better, science people) that has given me such a good chance at blowing this lymphoma out of my body.

Tomorrow, as you play with your child or go to work, drink your coffee or FINISH MY KITCHEN, please take at least 60 seconds out of your day to congratulate yourself for being a good person and helping to contribute to my very own healing and recovery. While I know there is no guarantee that only solidly good people are reading this blog, I have a hunch that most of you are nothing short of spectacular (as Judah would say), and you'll make up for the rest. Thank you from this one person to you many people. Apparently what they say is true: it takes a village.

xxoo

Chapter 2 Comes to a Close

Do you like my clipart?

And the headline reads:  Treatment Ends in True Dramatic Fashion.  Not that I would've expected anything different, as every step of the way I have asked myself (and those around me), "SERIOUSLY??"  This afternoon was no different.

First off, I was praying last night (as the thick snow came down down down) that the cancer center would even be open today so I could get my 20th and final dose in already.  Thankfully, when I called the office this morning, the recording informed me that they would open at 9 am. 

Since we were all pretty much snowed in (until it was time to drive to the hospital), the day was spent cleaning, eating and relaxing.  We have wonderful neighbors (one who is generous with his snow thrower!) and between them and Dan were easily shoveled out by 3. 

We met with Dr. H before treatment (hard to believe Dan hadn't met him until today), where he reminded me of the game plan after today:  CT scan in a month (at Penna Hosp), PET scan 2 months after.  He doesn't have a problem with me leaving my port in for another 3 months (until after the PET, as I'm concerned about getting my veins accessed between now and then), although I'm not completely sold on the idea.  I will see Dr. Henry in 2 weeks to discuss this plan with him (and get my port flushed again), and make my CT scan arrangements.  What we are hoping to see then is that the citrus fruit currently stationed in my chest is the same size or smaller.  We won't be able to tell how successful the radiation was until the end of March, as the PET will show any remaining activity. 

As we finished up with Dr. H, I thought I would wait for a few minutes, get my final dose and be on my merry way. Aha ha ha.  Almost an hour later, I was finally called back.  They had even turned off the coffee drink machine (Dan's favorite part of the facility).  By the time I was done, the valet had given our keys to the valet around the corner, at a different entrance to the hospital.  Ugh.  Are ya kiddin me?

Unfortunately, I didn't leave feeling happy or relieved, but more perturbed and irritated.  Come to think off it, that's pretty much how I left there most days, ticked off that I had to do it at all.

Dan asked me if I felt a certain sense of accomplishment at what I had endured and survived over the past 7 months (he knew better than to ask if I felt any kind of cautious optimism).  Relief that my schedule does not revolve around treatment anymore?  My reply:  Not so much.  While it's lovely that I don't have to be surrounded by other in-treatment patients, wear old blue gowns or lay on the table to listen to depressing music (today's last tune: what becomes of the broken hearted?????) while being zapped every day, my mind is onto the next big worry.  The worry comes regardless of locale.  I can make my own meaning of any song on the radio.  

And I'm sure I will write plenty about those big and bigger worries in the coming weeks; tonight I am going to enjoy my [spiked] soy hot cocoa, the smell of a clean house, and fixate my immediate hopes on the completion of the kitchen before the new year.

SAVE THE DATE:  Thursday, December 30, 2010 is the 3rd and last Triannual Team Mama Mia Appreciation Day.  Mark your calendars and remember to check back into the blog for further details.

xxoo

Countdown

18 radiation doses complete, 2 more to go.  I realize I have not been extremely prolific these past few weeks and my only explanation is that I don't have anything new or enlightening to share.  Radiation, while not nearly as mean and nasty as chemo, just stinks.  It's depressing and lonely and 4 times out of 5 I leave in a bad mood.  My skin is itchy and tender, my patience (especially for preschooler meanness) is thin.  I'm in a bit of an angry period.  I feel that this experience has been unjustly bestowed upon me and my boys.  Dan and I have spent the past 8 years trying to help children become better citizens (including our own child), earning nowhere near the salaries we have worked for, doing what we thought was good.  Do we do this because we think karmically it exempts us from terrible fates?  No, but we are able to sleep at night knowing we spend our days in the trenches with people who need us.  They need us and we are there. 

Enter: 2010.  A year full of doctors, hospitals, baldness, fear, uncertainty, tears and rumbling tummies.  Not part of the plan.  Traumatizing for sure. 

And I teeter between being sad and sorry for us and being furious that this time has been taken from us.  Stabbing memories that I can't forget or undo, as though there's a giant gash that continues to bleed (see splinched).  Oh, and I'm sure this has nothing to do with my ladies' time of the month (most ladies only have one time of the month, whereas I have 2 - lucky me). 

I will be relieved (I think) next Monday evening, when I will have completed all 20 treatments and 2011 will be in view.  I have a CT scan to look forward to in a month (to check for size of enlarged node) and then a PET scan in 3 months (to check for activity). 

Below are a series of photos of the equipment in the treatment room. 

Umm, yeah.  Caution.

There's my mold.

And a close-up of the place where I lay my head (and I hold onto those stick thingys the same way every day).

Yes, this time, it IS me!

And a view of the computer screens and x-ray plates (they look like cubbies, but there are really glass plates slid into each of those wooden notches).

This is what I see when I'm laying on the table, looking up.  Those plates open up into the shape of my tumor.  Creepy and also cool.

The rather large entryway to the green machine room (see the green dot above the door?)

***

The words above were written this afternoon, post-treatment.  You get a pretty good picture of how yuck I was feeling.  Since then, I've eaten a nourishing dinner (thank you so much ET) and had an uplifting acupuncture session.

My acupuncturist and I had a deep conversation about this past year (Year of the Tiger) vs. the upcoming year (Year of the Rabbit) and how 2011 is going to be SO much better.  She reminded me that my body is strong and that it miraculously protected me from getting pregnant because it had much bigger fish to fry.  While my RE (reproductive endocrinologist) doesn't completely agree with this line of thought (however, my two oncologists do), I know I must make a conscious choice to trust my body again instead of being angry and feeling betrayed. 

While I lay on the soft acupuncture table (with the glorious heat lamp toasting my toesies), as instructed, I began to think about my body surrounded by hearts and streamers, as opposed to daggers and knives.  As difficult as it is to try to reconnect with myself, I must find a way to force more positive thinking into my brain.  Wonderful acupuncture queen says my kidney and spleen are strong and that I can have a baby when my body is ready. 

I have 2 more days of laying on that blue mold before they will toss it into the non-toxic dumpster and I will be on my way to recovery - of mind and body.

Merry Christmas and Happy Year of the Rabbit to you.

xxoo

This Post is Brought to You by...

Product!  As in, I used product in my hair for tonight's Harry Potter Date Night (Alterna Hemp mud, FYI).  I also used eye make up, but not on my brows.  They are uneven, but visible!  Three cheers for facial hair. 

Not that I don't love to stay in and fall asleep before Judah every night, but I've been waiting a good number of years to see the Deathly Hallows.  I am keeping my fingers crossed that a) I can stay awake throughout the entire 2 and 1/2 hour film and b) the popcorn doesn't hurt going down (don't tell the movie theater people that I prefer to bring my own, k?).

xxoo

Memorable Me

At least I had a clean pair of gowns today.

I take pride in coming up with new and unusual side effects of my treatment - especially useful for stumping my doctors.  I feel like I'll be harder to forget if I'm the first/only patient to ever report _______.  In this case, I have observed a weird sensation (almost like pins and needles) in the back of my head that happens everytime I swallow anything thicker than, say, applesauce.  At first, I though I had an itch that wouldn't go away, until I tuned into the feeling and noticed it was only when I pushed food to the back of my throat to be swallowed.  I'm sure you have lots of questions about this (or perhaps you have none at all, thinking rather, what is wrong with this girl?); I will try to preemptively answer them for you.

No, I don't get the feeling when I swallow saliva, but I do if I take a too big gulp of water (or any other liquid).  Yes, this does affect my eating habits (not to mention frustrate me and make me cranky) and I have lost a few pounds since last week.  I was told by Dr. H today to eat.  He is not concerned about this weird back of head sensation, rather he thinks the irritation to my throat from the radiation is manifesting itself in this way (I don't have a terrible sore throat, but just mainly I don't feel like reading bedtime stories, singing songs or having long telephone conversations).

Hmm...  I wonder what kind of help they mean..

I have developed a lovely red rectangle on my chest, over the biotch of a tumor that is being zapped.  The doctors say (hooray!) this will only get redder and more painful over the next two weeks (similar to a sunburn).  I also have a similar shape on my back (since I get treated on both sides of my body), which Dan is taking care of for me with some special "reconstructive cancer cream" upon request.

Ah, radiation.  While my experience has been, well, bizarre in a sci-fi-star-trek-medicine way, I've at least been able to laugh here and there.  Like when my locker broke, with all of my belongings and warm clothes inside, and I had to wait for the heroic hospital maintenance guy to come and rescue me.  Or when I put on a gown with boogie stains (it sure looks like boogies).  Or when the radiation tech tugging me into position reveals she's pregnant.  Okay, well maybe it hasn't been all giggles.  But I do genuinely like my doctors and I appreciate the time they spend with me, never rushing me, always making me feel like a VIP.

In other news today, I met my students for a short field trip at the Barnes Foundation in Merion.  I had never been there before (due to the need for purchasing timed tickets way in advance), so it was amazing for me to take it all in.  For those of you who have also never visited the space, please check out their website for a complete description.  Basically it's the most incredible collection of art housed in such a (relatively) small space.  The foundation was meant to be an educational collection (which it is) as opposed to a museum, however, for many of my students, it was a first exposure to historical (and extremely valuable) art.  It was a fantastic distraction for me to see up close and personal all of the Matisses, Rousseaus, Renoirs, El Grecos, etc. - all of which had absolutely NOTHING to do with cancer!!  Sigh.  And THANK YOU ROBYN!

The art was obviously a highlight.  But seeing my kids was a total ego boost.  They did not know I was coming, so it was fabulous to see the excitement in their faces when we saw each other as they got off the bus.  I opted to go hatless (indoors, of course), as I would say there is finally a fairly uniform follicular covering at this point.  When we went downstairs to hang up our jackets and I removed my hat for the big reveal, the kids all clapped and cheered - my personal equivalent of being lifted onto shoulders and passed around after a big win.  After hugs and small bits of news were exchanged, of course, they asked about my return to school with eyes full of hope.  I explained that I still am having treatment every day and so I won't be back until after Christmas, probably not until February (when hopefully I will have enough energy to tackle 32 9 & 10 year olds for 7 hours each day, plus plans, grading, etc.).  They were disappointed, but happy enough to have me there with them to overlook it.  It's nice to know they miss me as much as I miss them.

***

I haven't been in the greatest of spirits lately.  Visiting the hospital on a daily basis, feeling tired and reminded of my illness is (kinda) depressing.  Not being able to take comfort in delicious foods is irritating.  And don't get me started on my time(s) of the month.  Sorry, Dan.

Looking back on 2010 and wondering where the past 7 months went (not to mention the 18 months prior to that) is mind blowing.  Looking ahead to 2011 and wondering how I'll get through the 3 months I must wait until my next scan is terrifying.  Have I mentioned yet how I detest uncertainty?  Hell, I don't even like to listen to a cd unless I have the cover to tell me the order of the upcoming songs.  This whole cancer crap was never in my plans and lately I've been feeling pretty damn pissed that it was pushed onto my plate without my permission.  It's just not fair.

Yes, I know that this line of thinking is normal.  And also, yes, I know it doesn't get me anywhere.  That kind of hakuna matata rationalization does not make me feel better.  The whole "everything happens for a reason" is very easy to say when everything doesn't happen to you.  I'm mad that so much attention has revolved around me - and not because I discovered a way to time travel, or solved our country's budget crisis, or won a Tony for my legendary portrayal of Eponine Thenardier in Les Mis - because I'm sick.  My child still asks about my boo boo every day and isn't ready to say goodnight until he's given me 24 kisses.  "Stay," he says.  I still cry at the thought of not being able to have another baby (side note: I have stumbled upon a most awesome in/fertility blog in my internet travels: So Close for anyone who is interested in the deepest darkest thoughts of someone struggling to bring children into her family).  Basically, cancer sucks.

***

I'm so fancy!

That being said, I left radiation on a high note today.  Some mysterious friend (although I have a few ideas of who it could be) sponsored a Tibetan prayer flag in my honor through the organization Radiating Hope.  This is the very rad non-profit run by one of my doctors (Dr. F) at Abington.  The group has multiple missions: to climb mountains in honor of cancer patients as well as to raise money to bring radiation equipment and treatment to developing countries.  Supercool.  So Dr. F presented me with a fancy certificate (with my name on it!!  anyone who truly knows me already knows how fun this is) and a teeny bit of renewed hope.

Finally, a big shout out to the incredible helping hands that jumped at the chance to help us out with dinners again.  The next few weeks filled up in the blink of an eye (which is SO helpful).  I cannot tell a lie - you guys can really cook.  I can't wait for the kitchen to be done and my mojo to return so we can pay it forward.

xxoo

Wanted: Magic Wand

Bubbe's Best.  Easy to swallow and tastes goooood goin down.

Well, maybe not a magic wand, but remember that time warpy necklace thing (a Time Turner) Hermione had in Prisoner of Azkaban?  I could really go for one of those right about now.  The problem is, I hate the idea of wishing away time.  But things are fairly sucky at the moment.  And since no one has been able to present me with a fast forward button, I'm going for the wand as a second choice.

Kitchen?  Still not done.  In fact, Dan is sanding the ceiling as I type this, paint dust a-flyin all over the place.  Cabinet doors and drawer fronts are still not on, meaning the cabinets and drawers are still empty and all of our cooking equipment is packed away in boxes (or laid out in a mess in the dining room).

Radiation?  Not as bad as chemo, for sure, but it's no walk in the park.  I started to feel some side effects at the end of last week (which just happened to coincide with Judah coming down with a croupy cough and a nasty cold at 3:00 Thursday morning).  Aside from being just generally tired and cranky, I enjoy a sore throat most of the time.  But the weirdest (and most annoying) side effect comes from my esophagus.  When I swallow (food or water), I can feel the matter going down to my stomach.  This also comes with frequent hiccups and burping.  Good times for another 2 weeks, then I can start to recover and begin the waiting game until my March scans.

Hair?  This is the only good news I have to share.  Hair is definitely growing.  I wouldn't say it's long enough to measure with a ruler (or other standard measuring tool), but it's visible, and doing its part to shield my big old head from this nasty, cold, East Coast air.  My hopes are that I will need a haircut by my birthday (still 6 weeks away).  Even then, I'm betting it will be the Emma Watson/Twiggy look.  As long as I have eyebrows to match, you will not hear me complaining.

You'll have to excuse the grumpy tone of this post, but I haven't been out to get coffee yet (and you can imagine that whatever machine/beans we have are sealed tightly in a brown basement box).  I realize my posts are not coming as often as I think about writing them.  My days are spent at either appointments (acupuncture, massage, therapy), at radiation, or doing Judah pick up/drop off.  Oh yeah, then there's the Judah entertainment portion of each day.  This no nap thing is getting old.  I did get him to nap a few times this week, as he needed extra rest.  But unfortunately I did not get to enjoy the same rest as I had to get over to the zapper just as soon as he fell asleep. 

Man, the iPhone rocks.

I did get a chance to visit my school last week, and seeing my co-workers was a much needed pick-me-up.  Dan and I took Judah to his first Christmas party (I think it was his first, anyway), where he met Santa and discovered the deliciousness that is a candy cane.  I can say with certainty that these are moments I do not want to miss (I just need a little caffeine to truly enjoy them).


xxoo

On the first night of Hanukkah, my true love gave to me...

First on my wishlist would be enough hair to keep my scalp warm.  Second would be enough eyebrows to make it look like I actually have eyebrows (without additional make up, that is).

He surprised me.  He knew all the words to the first blessing.

Quite delish, if I do say so myself.  However, my tummy feels otherwise at the moment.  I think it was the sour cream.  Maybe I'll try eating another one plain and get back to you.

Seriously, is there anything better than that face on your kid??  Anything??  And all for the cost of a small action figure??  Totally worth it.

The Good:

They played non-holiday music during treatment!  Hmmm.. it almost makes me wonder if someone is reading my blog.... mmm... But, no.  Couldn't be.  The nurse even asked me at the end if the music was okay.  I laughed and said it was better than the holiday stuff, because after 4 weeks of cancer treatment with Jessica Simpson singing Xmas carols, I'm not sure I could ever separate the two again.

Also, I did not have a panic attack during the laser show.  It was super quick (I swear it's almost not worth turning off your engine).  After I changed into my gown, I barely cracked open a magazine before my name was called back to the green room.  The other ladies in waiting were jealous.  Ah-ha. (Sometimes I'm not nice.  It's true.  Just ask my mom.)

Pumped as I was for Hanukkah (any excuse to eat greasy, salty potatoes is fine by me, not to mention the doughnuts for dessert), I was most excited that I had the energy to make my tasty latkes.  I have it down to a science by now and was most pleased to carry on the tradition, even if I couldn't cook them in my new kitchen yet.  Yep.  Still yummers.

The Breathing Room Foundation (thank you Schwartz Family) brought over enough presents yesterday for 3 Hanukkahs.  Although Hanukkah is not quite as big a holiday as Christmas, I am never one to turn down a gift.  Tonight we began opening them.  So far, Judah has gotten a new wooden train, a police jeep and 2 Toy Story action figures.  Fun times!

The Bad:


Our white car died.  Again.  Water pump?  Muffler?  Axel?  (Yes, I am just naming random car parts.) Who the heck knows?

The Ugly:

My skin is so dry (both due to chemo after-effects as well as this rude cold weather we're having in the East), it flakes up just from sleeping.  I put a special creme on (it's supposed to be a moisturizing mask) and just rub it all the way in.  But my face is still hungry for more.  I'm going to have to head back to my lovely aesthetician for another moisturizing facial massage (pronounced mass-ahge).

***

Today's post is brought to you by the letters C and F (the initials of my fabulously hard working co-teacher who gave me the idea for the format) and the number 32 (how many children are in our class).  I promise, I will return to work.  Eventually.

xxoo

Note from the Editor

Yesterday was Radiation Day 2 (of 20).  Once each week I meet with my doctors after treatment to discuss any issues or side effects I might have from the rads.  During our Day 2 meeting, it was called to my attention that I am not receiving IMRT, which I wrote about before (Hi Dr. H and Dr. F if you're reading this!!).  Between our first consultation and the start of my treatment on Monday, the doctors reviewed multiple plans for me.  They decided that the best course of action would be to use Conformal 3-D radiation, which shoots beams (in the shape of the mass) at the front and the back of the tumor. 

This is different from IMRT, which shoots beams at the tumor from many different angles, and thus, puts more healthy tissue at risk for a second malignancy many years from now.  The doctors explained that if my type of tumor appeared in an 80 year old, they would use IMRT to zap it, because having a second malignancy when you 100 (if you make it that far) is not quite so bad as having to go through this all over again at age 50.  But since the odds are in my favor (although things don't seem so favorable at the moment), I agreed that the type of radiation they chose sounded like the better choice overall and promised to correct myself on here.  Accuracy counts.

Aside from treatment, yesterday was a busy day.  I took the train into center city for a (much needed) therapy appointment first thing.  Not long after I arrived, the fire alarm in the building went off.  We ignored it for a while (my therapist said someone would knock if we really needed to get out), but by the fifth time, it seemed prudent for us to leave the building.  Fortunately, on our way out, we discovered that workers were fixing the system and it was okay to stay (if you could concentrate with the bells going off).  So, back into her office we went, where her phone rang twice, I received my own call (the contractor) and texts...  Needless to say, it was not the most fluid of sessions.

However, I did stumble upon why the radiation experience is so disturbing and upsetting for me.  I compared it to chemo, where your family and friends can sit with you, there are many nurses bustling around, people everywhere (albeit other sick people).  Radiation is the complete opposite.  You are in a sterile room, alone for your treatment.  The only thing to take your mind off of what's happening is the music playing (and lucky for me - it's holiday, holiday and more holiday for the month of December).  The good news is that on days when you don't have x-rays taken, the whole thing (from locker room to valet car pickup) takes less than 15 minutes.  The length of time makes up for the bizarre nature of the whole experience.  And I definitely felt better after having seen the doctors yesterday.  I realize bedside manner isn't important to all patients, but for me, having doctors who smile and talk to you like a real person is essential. 

I came home from the hospital last night and proceeded to make dinner for the first time in many, many months.  Our kitchenware is largely still packed in boxes in the basement, but I managed to find a pot and a few pans to make some TJ's apple chicken sausage, balsamic brussels sprouts and a fluffy rice pilaf.  It was tasty, everyone ate, and I give myself points for getting the job done, even though I was pretty tired.  After an early bath and bedtime for Judah, it was early to bed for me as well.  I was asleep by 9:02 and since I TiVoed Glee, will have some catching up to do tonight (I still have last week's episode to watch). 

Posted below you will find current photos of our kitchen.  Today the drawers and shelves are going in (as I type) and hopefully (fingers crossed) we will have a new window in (and some new cabinet doors??) by the end of the week.  I am really looking forward to putting things away!

Still on the kitchen agenda:  painting, new lighting fixture over the sink, magnetic knife strip, hanging bars for pots and pans, secure granite windowsills and install molding. 

Happy Hanukkah!  May your latkes be crispy and your sufganiot be sweet.

xxoo