Wednesday, October 27, 2010

Newest Member of the Team

Me and my dreamboat
Enter Dr. Herbert.  A true mensch.  This morning we spent almost 90 minutes talking with him, asking questions, listening to answers and disclaimers, meeting his staff and making a plan.  Yes, you heard me right, a PLAN!!  A man after my own heart - he loves to make plans! 

So here goes:  I will receive 4 weeks of radiation therapy to two places in my chest (my left supraclavical? I think, and my mediastinum - where the "bulky" blob remains).  Well, really 3 weeks to both areas and an extra week to the blob - to zap the bejeezus out of it.  There are a few dates to plan the treatment that require some additional scans, to ensure the precise locations of said blob and another small node that appears resolved in the PET, but should be treated just to make sure.  I will begin my 4 consecutive weeks of radiation at the end of November, so will hopefully be done before the start of 2011. 

Dr. Herbert recommended waiting a full 3 months from the end of this course to have another PET scan, to give all inflamed tissue time to settle and to truly get a good idea of how successful we are.  By that timeline, we're looking at the end of March 2011 to check and see what our SUV levels are and to determine remission.

Possible (HA HA HA) side effects include fatigue (of course), some redness around the areas being treated (I'll be zapped from multiple angles - via IMRT, or Intensity-Modulated Radiation Therapy, which is an advanced, precisely targeted form of radiation), sore throat (near the end of the 4 weeks) and whatever else I can come up with.  I did warn him that I was sensitive and "reactive", but I'm not quite sure he got the full picture.  We'll give him some time.

My next planning appointment is this coming Monday (after I go down to my school district's doctor to prove to them I have cancer - I guess I'll just show them my scars and bald head, otherwise I'm not sure if they've got a surgeon lined up to do another biopsy...).  I will get scanned (again) and tattooed (3 permanent blue freckles) to ensure I am getting lasered at the same exact points every time.  I am loving all of this planning because it allows me to have some idea of what to expect from the next few months.  At least if I have to wait for something, I will be prepared and focused, with a goal in mind and an end date on the calendar.

I much enjoyed meeting Dr. Herbert (and his resident, whose blog I am adding to the GOOD LINKS on the sidebar, so be sure to check it out) and I feel a lot more positive today than yesterday.  One day at a time, right?  The photo at the top is from our visit to the mall after picking Judah up from school.  Yes, the fountain is pink.  Maybe next September, I'll lobby for them to turn it lime green. 


Tuesday, October 26, 2010

The Impatient Patient

not me or my phone, but the most accurate visual I could find with the least amount of hair (except that I was not smiling while willing my phone to ring)
Argh.  I am through with waiting.  I'm sure I've said it before , but I'll say it again like I mean it this time:  I am not a patient person.  Most of my uneasiness is due to the having no control over this cancer thing - I'm all dependent on other people doing their jobs (and in a timely manner).  And the remaining distaste I have for waiting is that I've just had to do so damn much of it over the past 2 years. 

But now that I've spoken with my doctor, I suppose I feel a little bit better.  The results of my most recent CT/PET scan were a mixed bag.  While the mass in my chest is much smaller (from a grapefruit in June to a lemon in October), there is still cancerous (also known as hypermetabolic) activity within the stubborn beast.  The numbers which represent this activity weren't as low as we had all (including Dr. H) hoped, but the progression and decrease in activity is still a good thing.

also not me, but what I've read a clean ct/pet looks like: my goal
What does this all mean?  According to Dr. H, it just means that it would be unwise to stop treatment now, and better to continue as planned to radiation.  Beyond that, we will find out more tomorrow when we meet (FINALLY) with the radiation oncologist who will determine - from looking at all of my reports and scans - exactly how many rounds of laser tag I'll be playin.  Six to eight weeks after the games end I will have another scan which will hopefully indicate levels of ZERO cancerous activity in my mediastinal lymph nodes (or anywhere else, for that matter).

It's all quite frightening and frustrating.  While I suppose I should feel happy that there has been responsive change in the tumor, I feel more let down that the scan did not show better results.  Six long rounds of terrible, horrible, no good, very bad chemo (thank you Judith Viorst) and it's not gone yet??  Ugh.  I'm glad I made Dr. H promise no more of that crap no matter what this scan showed.  Furthermore, because I'm always looking down the bumpy road ahead of me, my fears are focused on what happens after the radiation is over and all the what ifs that go along with the end of treatment.

Being a "survivor" isn't as easy as it looks.  While I know I'm in a rush to be finished with all the yucky medicine, there's so much uncertainty in life beyond cancer (still hoping I reach that step relatively quickly).  I've never liked the unknown (I like to hold the CD covers while I listen to music so I know what song is coming next).  And like my therapist (bless her) says, once you no longer have the task of just the next 3 week cycle to focus on, it's easy to let your mind run wild.

I will, however, end this post on a happy note.  I took Judah to his first (of a 10 week class) kidnastics at our township community center.  It was the only class parents are allowed to stay for, so I'm glad I got to be the one with him.  I realized how completely and utterly in love with this kid I am, watching him light up with pride after completing forward and backward rolls, or running around to the music with a megawatt smile on his face.  And not to compare him to the other kids in the group (nah, I never do that), because there were some cuties in the bunch, but he was a good listener, gave his best effort at everything (even if he isn't the best athlete - sorry, Dan, he's got my genes, too) and had a great time, despite some other children budging in line in front of him repeatedly.  He (as always) made me proud to be his mama.


Sunday, October 24, 2010

Building Strength

waiting in my fig for the train to arrive
Yesterday was definitely a high point of the past few months.  Between a lovely brunch date with some of my girls (quinoa porridge a must-eat), cupcakes from Baked by Melissa (thank you Shan) and my team representin' at Light the Night, it was jam-packed.  In other words, I fell asleep in my clothes less than an hour after returning home.

valuable team members
The day started off with bright sunshine as I waved goodbye to Dan and Judah at the train station.  I met up with a few of my favorite NYC/NJ girls (very un-Snooki) in Center City where we cabbed to South Philly for brunch with the other Philly girls.  Delicious food (we also ordered graham cracker coated, pumpkin stuffed french toast for the table) and no high chairs at the table allowed us to catch up uninterrupted.  It was quite lovely.

After our meal, we met hung out at Amy's, met Rufus (the Pretzel dog), walked to Auntie Rae Rae's to get our Joely fix, ate tiny but scrumptious cupcakes imported from Union Square, then got changed for the Walk.

Donning our Team Mama Mia t-shirts, we met up with some other members of the team at the base of the Philadelphia Museum of Art steps.  It took a while to get checked in, get t-shirts, light-up balloons (red for supporters, gold in memory of someone and white for survivors), food, as well as fraternize with NBC10 peacocks and oddly inflated giant tigers (still don't know the purpose of that one).  The weather cooperated and it was even warm enough for me to go bare headed until the sun set.  Luckily we missed the Remembrance Ceremony, as the head-shaving ceremony had us in tears right from the start. The MC seemed intent on forcing people to talk about their loved ones while choking back tears of their own.

Gonna rock this walk out.
Team Coach carrying the Captain
It seemed odd (IMHO), seeing as how everyone who was in attendance had already raised money or given some of their own, and didn't need to be moved to tears repeatedly.  I would've preferred it to be more of a pep rally, cheering on researchers, doctors, patients and survivors to find cures for blood cancers and rid the world of awful boo boos.  But I realize it is so important to also pay tribute to those who have not survived these diseases, and to know that they are part of this walk, too.  Part of my survival is due to them and we must keep their memories alive.
Team Banner (as decorated by 104/105)

I was a tiny bit disappointed (okay, a lot bit) at how few white balloons (survivors) were raised in the air.   I've been trying to rationalize it in my head by thinking that people don't want to relive the experience and want to put it behind them.  It was too good of a day to linger on this for too long.  I said to Rachel, for every white balloon, it takes a whole bunch of red ones.  And thank goodness there were a whole lot of red ones there.

Red Boathouse Row
So we walked in the dark with our light-up balloons (Judah rode) along the Schuylkill River, past boat house row (lit in red in honor of the LLS).  Judah was thrilled that it was nighttime (I think it felt so forbidden) and he was out with all of these crowds of people during what he thought was past his bedtime.

Lotsa Walkers
At some point, early in the second mile, he got out of the stroller and walked with us.  He was cheering (and leading others in cheer), "Go Mama Mia!  Go Mama Mia!  Mommy So Strong!!  Mommy So Strong!"  No matter how tired I may have been, stopping was not an option (although being pushed in the stroller wouldn't have been a bad one).

Team Mama Mia Representatives
We made it to the finish line and back to the bottom of the Art Museum steps by the light of the very bright full moon (which I enjoyed imagining was my own white survivor balloon in the sky).  A DJ was set up there playing "nice music" (according to my 3 year old) and we rocked it out for a little while (a prelude to the dance party still in the planning stage) before saying goodnight to our fellow team members and heading back to the car.  I am very grateful that so many people donated and that I had a great group of supporters there with me, marching beside me, holding my hand and even offering to carry me, as they've done for the past five months.

The biggest white balloon shining down
I remind them (and you) that tomorrow is the 2nd Triannual Team Mama Mia Appreciation Day.  I hope you, my supporters, will remember to pat yourselves on the back tomorrow (since I won't be able to get to give EVERYone the hugs they deserve) for being a blog reader, a friend, a dinner maker, a sponsor, a tshirt or ribbon wearer, a fellow walker, a card or package or email or energy or prayer sender - for being a member of the team.  We're not done yet, but we're on our way.  So to y'all I say, "Thank you."


Thursday, October 21, 2010

And Now We Wait

Not that this waiting is any different from any of the other waiting we've done in the past (almost) two years.  We've waited to try to get pregnant, waited to find out we weren't, waited for biopsy results, waited for treatment, appointments, bloodwork, kitchen cabinets to be built, and now we wait for scan results.  The last time I had a scan was on a Thursday (I think), and Dr. Henry called late Friday night with the good news so I wouldn't have to think about it all weekend long.  I'm trying not to hold out too much hope that the same thing will happen this time, but it wouldn't be the worst thing in the world to hear his voice before Monday.

Today's scans weren't too painful.  No port drama (initially), same nice lady who injected me the last 2 times with radioactive glucose left me in a tiny room to watch My So-Called Life on my iPad, and then 20 minutes in the fancy donut machine.  I only almost-cried twice from the overwhelming anxiety (should've taken an ativan...), and factoring in that I awoke at 5:45 to take the train into Center City alone, I considered that successful.

Once the scans were finished, I went down to the radiology films department to collect discs and reports of my prior scans (which I will take with me on Wednesday when I meet with the newest member of the team, the radiation oncologist).  Surprisingly, they were waiting for me in an envelope, marked with my name, right by the front desk, just as was promised to me when I called last week.  (I have learned that things going smoothly seems to be a rarity in the medical world.  Medicine sure isn't the exact science I'd always assumed it to be.  There's a whole lot more guessing than I ever woulda thunk.) Woot woot for the guy in the records room!

I returned to the Radiology waiting room (a familiar spot by now) to retrieve the disc from today's scan, and use the ladies' room (as my dressing room, to reaffix my wig, which I had removed for the scan for comfort's sake).  It was kind of funny.  I went into the W.C. with a scarf on my head and emerged a Hollywood blonde.  The older man sitting by the door smiled when I opened the door looking so very put together (tee hee).  The disc was ready within minutes of my breakfast snack consumption (in the hallway, so as not to tempt the other "waiters" with my creamy yogurt shake and crunchy almond biscotti), and I headed towards my doctor's office for vitamin D bloodwork and a flu shot.

On my way out of the hospital, I ran into Dr. Henry, where I showed him the gift I'd brought him (a classic SU2C shirt he can wear while playing tennis) and reminded him I'd just come from my scan (HINT: look for my report and call me ASAP, man!).  I checked in at the main reception area, they put me into the system and told me to go across the hall to the chemo unit for my shot.  I followed their directions and found myself smack dab in the middle of .... a baby shower!  Too funny.  Good thing I was able to laugh it off as the nurse on the chemo side told me to go back to the main desk for my lab work.  FOR REAL?? 

I went back to the main desk, they eventually called me back to take a small vial of blood and de-access my port (but not before dripping blood on my new tank top, thank you very much).  The nurse walked me over to the chemo unit to make sure I got the shot (instead of getting sent back again to the main desk, as is known to happen).  Baby shower was over, shot burned going in, I breathed and then got the heck outta there.

Made my way over to therapy (next building over from the doctor's office) where I shared with my doctor my latest frustrations, shed a few tears (okay, more than a few), and left feeling a tad lighter than when I entered.

Next stop, Chapterhouse, my favorite coffee shop in our old neighborhood, Bella Vista, where they make so much more than coffee.  I enjoyed a super deelicious rice milk/banana/mexican chocolate spices shake, half of an olive tuna panini and a peach-yolk pastry thingy for the road.  Looking at the time, I noticed I had to hussle to make my pedicure appointment at 12 pm. 

Yes, that is correct, it is finally time for the feet professionals to step in.  I avoided the salons all summer because of risk of infection (some of those girls are just too happy with the cuticle cutters), but now that chemo is over and (hopefully) my white cell count returning to normal, I concluded my feet were long overdue for a good soak, scrub, rub and polish.  My fairy godmother (thank you Joyce!) found me an organic nail place (with a fabulous girl who knows how to use honey and cornmeal to moisturize and exfoliate) and I will forever be grateful.  I was pampered and had a chance to relax with a full tummy, lovely music, yummy (nontoxic) smells and no time constraints (Judah's grandmother was left in charge and I had no parking meter to feed).

After a trip to Anthropologie to fondle every bowl, glass, and chatchke in their home department, and a quick stop at DiBruno Bros. for beverage treat #2, I hopped on a train back home.  Phew.  Big day and like I said before, now we wait.  Will post with results as soon as I have some.  Until then, I will try to distract myself with the NLCS Game 5.  Although it almost makes me more anxious than thinking about the scans.  Go Phils!


Wednesday, October 20, 2010

Busy, Busy

Let the scanxiety begin.  Tomorrow I have my first CT/PET scans since July and I am doing everything in my power to not think about them.  As much as I have wanted to fast forward to tomorrow, and then to next Wednesday's appointment with the new doctor, I still get heart palpitations when I think about the possibilities and uncertainties that lie ahead.

To distract myself, I have done everything from visit my kids at school to laundry (and lots of it) to washing dishes, shopping (Ikea, even!!), replacing shower curtains, baking (pesto pizza and zucchini oatmeal raisin muffins), reading (Little Bee and The Hunger Games, both oh so uplifting - NOT) and also laundry (did I mention that already?).  Now you can also add blogging to that list.  The three hours that Judah spends in school each morning seems to fly by, especially on mornings that I get to visit the chiropractor or get a massage, but he is such a good companion when we are together, it's hard to complain.  He gives me kisses on the back of my hands as we're crossing the street. 

Our first conversation this morning:
Judah:  I had good dreams, Mommy.
Me:  I'm so glad to hear that, Judah B.  What did you dream about?
Judah: You.

I am looking forward to seeing good friends on Saturday as well as the Light the Night Walk (for which Team Mama Mia successfully raised over $1,000!!  Woo HOO!).  I am hoping I can walk the 2 miles without a problem, since we don't have a stroller big enough for me (I've lost weight, but not that much).  I've wanted to do some training (ha ha ha) this week, but I'm not allowed to do anything that might affect my muscles prior to the scans.

Since we raised $1,000, LLS sent us a banner to decorate and carry during the walk.  I didn't know quite what to do with all that empty space, so I brought it to school yesterday and asked all of my kids to sign it, using my fancy, brightly colored permanent markers (a treat, for sure).  They did a great job and I think, now, feel like a true part of my team.  And they really have been.  I love seeing their smiling faces when I go to visit school.  They don't treat me any differently (i.e. same silly behaviors, chattiness, calling out, etc. as always), even though I've been out sick.  Though they don't know it, I really appreciate that.  I love feeling normal again, even if it's just for an hour or two.  I read D for Democracy (so THERE, NYT article about how slow picture book sales are! Read sad article here. Plus, look for my letter to the editor coming soon.) and they asked a lot of excellent questions about the upcoming election, wars, political parties, Uncle Sam...  And then I attempted to teach them the differences between your/you're and their/there/they're.  At least I can honestly tell their 5th grade teachers I tried.

Next Monday, 10/25/10, will be our 2nd triannual Team Mama Mia Appreciation Day.  More coming on the planned festivities.  Hopefully, this will also coincide with our Kitchen Remodel Day 1, so I will post pictures as the kitchen morphs from the inside of a bright blue egg to a lovely place to cook.  At the moment, It is looking pretty bare, sans cabinets and countertops.  We still have a working sink and stove, so we're staying here at our house until this weekend when we will make the move to my parents' house (aren't they the lucky ones?) while we lose all functional parts of the kitchen. 

The good news is that even with all that's going on, I have been able to fall asleep (a few times) without chemical assistance.  So perhaps I'm less anxious than I think.  Or else I have found a really really good therapist.  Either way, stay tuned for scan results, pictures from the LLS Walk and other potentially irrelevant details of my daily life.


Wednesday, October 13, 2010

Technically Speaking

5 Fridays this October!
Inquiring minds want to know what the deal is with the next stage of treatment.  So here are the details:  next Thursday (10/21), I will have a CT/PET scan (no barium needed, thank you very much) to see the success of the chemo as well as help to determine the schedule for radiation therapy. 

Since you're so curious, I will have you know that I have a flu shot scheduled for right after my scans as well as bloodwork to find out if my vitamin D levels are back to normal (after taking a crazy high 50,000 unit dose 3x a week for the past 4 weeks).

I will take discs of all scans with me to meet with my radiation oncologist (at Abington) on Oct. 27, where we will find out the recommended course of action with the zapper.  Hopefully, it won't be much more than two weeks of radiation (10-15 minutes each day), but we won't know for sure until the end of October.

For those of you paying extra close attention, you may remember our plans for a kitchen makeover.  Since Candice Olson (of HGTV fame) was unavailable to film Divine Design during a time that was convenient for us, we are going with Contractor VHGT (V is for very, H is for hot, G is for guy, T for his name).  The good news is that VHGT is custom making all of our cabinets at a reasonable price.  The bad news is that VHGT won't be able to start until Oct. 25 (now 1 week after the most recently declared start date).  Surprisingly, I'm not optimistic that the job will be done in a week, but supposedly it shouldn't take longer than that.  Famous last words. 

On our end, we are in the midst of lining up the countertop template measuring/install.  The troops are coming tomorrow to both pack up the unnecessary parts of the kitchen and set up a makeshift prep area in the dining room so that over the course of the next 2 weeks Dan can complete demo, sand the walls and prime them (bye bye blue paint!!).  Stay tuned for photos of each phase of the transformation.

And finally, here's the update on the Judah/End of Nap situation.  He told his teacher this morning that he was having trouble sleeping at night.  So we talked over lunch and decided to just have "rest time" in the afternoon, he didn't have to go to sleep.  And if he did fall asleep, I would wake him up earlier so that he would have an easier time at night.  Of course, he fell right to sleep and so after an hour and a half, I went in to wake him up.  It took a good 20 minutes before he was up and out of bed (the boy loves his bed), but he was happy and energized for the rest of the afternoon and fell right to sleep (no prolonged singing/playing in bed) at night.  What a kid.


Blue Skies, Red Leaves and Bob Marley

Not our tree, but you get the idea.
Now that the final heavy chemo fog has begun to lift, I can start to see life in a more positive light.  I don’t know if it’s this difficult for everyone who undergoes chemo, but I definitely found myself repeatedly stuck in a hole after each dose slammed me and made me feel like a sick person for such a prolonged period of time.  At a certain point, no amount of 30 Rock can pull you out of your hole. 

I wrote more than one (unpublished) blog post with tears streaming down my face, just trying to get the deep sadness out of my system.  Luckily, I did get it out (plus Dan discovered me doing the typing/crying thing and rescued me from myself yet again), my energy is returning in small bits, and today I found myself thinking about things other than cancer!!  WOO HOO!! 

There are so many things about Fall that I love:  low humidity/high sunshine, our Japanese maple turning red, eating soup (that doesn’t make me want to hurl), wearing leggings, and snuggling under blankets to name a few. 

Today I was back in the saddle again (day 14 is definitely late for me) and able to drop off and pick up Judah from school.  I even picked up a few things (read: stayed in double digits) at Whole Foods, cut up a fresh pineapple, took Judah out to lunch, to run errands, and I made phone calls before crashing on the couch at around 2:30.  I love being able to take care of business, even if it’s only taking Judah to get his feet measured at the shoe store.  I love engaging in conversation with him; his questions are often remarkable (for a 3 year old) and show that he really processes so much of what we tell him. 

Why do people wear glasses?
Why do the leaves change colors?
Why do some leaves NOT change colors?
Is your boo boo gone yet?  Why not?
In the new kitchen, is the microwave going to be on the counter?
Did you know people are animals?  Isn’t vat silly?
Did you know starfish eat wif veir tummies?
I am in utter denial about doing away with his naptime – I know he could probably just do with an hour-long nap, then an earlier bedtime, but I am not ready yet.  In the past week or so, he’s been having a hard time falling asleep.  We listen to him sing to his animals for a while before going back into his room to cover him up, remind him his eyes must be closed in order for him to really try, and give him ideas of what to think about as he drifts off to sleep. 

Every now and then, Dan or I will go in and he’ll be out of bed, playing with his animals or switching the books he likes to sleep with for different ones from the shelf.  And every time he gets busted, he bursts out in tears, immediately playing the victim, “I’m having a hard time, I need you to lay with me…”  And who can resist that little voice?  The crying face (that is my exact duplicate) that requires so much effort to look real?  (Answer:  no one yet)

And then tonight, I gave him his very first bubble bath.  He has sensitive skin (don’t know where he could’ve gotten that from), so we’ve avoided fragranced and bubbly things until now.  I found an unscented organic herbal formula (yes, it was pricey) at WF and thought he deserved to know what a real bubble bath was like.  We squirted the soap in together and then watched as mountains of suds formed in the bathwater.  He was amazed and delighted and in turn, he amazed and delighted me.  He needed no toys, no cups, just the bubbles were enough to entertain him (and I had to finally drag his pruny little body out 20 minutes later).  He declared, "It's like warm snow."  It was 100% pure goodness.  If I were better at sharing, I would bring him out to spend time with other sick people as therapy.  But I'm not that nice (plus that would be weird for him).  So I'll just write about him instead.

Last night, my parents were over for another delicious (mountain o’ couscous) dinner (thank you Rabia) and as we (ha ha) started cleaning up from the meal, Judah grabbed his guitar to give us a concert.  The first set was the traditional Old MacDonald and B-I-N-G-O, but then he got into Bob Marley and we all joined in (his favorite thing in the world is to lead us in a sing-a-long).  When we couldn’t remember any more verses of Three Little Birds, I put on a CD someone had made us (thank you Mary) so we could sing with the real deal.  And thus began the dance party (we used to have these frequently post-dinner, but have been a bit limited in our celebrations the past few months)…  For a brief time (it was a good workout for me), we sang and danced (did we all really fit in our tiny kitchen?) as if this whole thing was behind us.  Which, I guess, is a good start.


Friday, October 8, 2010

The Long Days

During the first 10 days post-chemo, time does not move.  Your mind functions (not well), but your body does not.  You wake up in the morning, hoping to be into double digits (with a 3 year old in the house that is impossible, even if someone else becomes the primary caregiver during this endless downtime).  So you are always disappointed to look at the alarm clock (barely visible through the bottled waters and cold cups of tea on the nightstand) and see numbers like 5 or 6. 

You teach yourself to simply not look at the clock.  If, by some miracle, you fall asleep without chemical assistance (once in a blue moon), you are sure to wake up smack dab in the middle of the night, unable to remember what pill you last took and when. 

Once five days have passed, the fatigue is fully old.  You are tired of having lost the physical desire to move, to roll from your left side to your right.  By day 6, perhaps a burst of energy pushes you to obsessive behaviors like vacuuming or gathering up all of the browsed-through catalogs to put into the recycling bin.  This is short lived as day 7 creeps in with soreness in your shoulders and an intense pulsing that no one else can sense from the outside. 

By day 8 you want to scream, but it requires too much energy.  You haven’t been active in over a week, so likely, neither have your bowels.  Your stomach makes squishy-squashy noises when empty, full or anywhere in between.  So loud, even if you wanted to carry on conversation, it would surely interrupt.  You can't muster up the strength to leave the house, but for a nauseating trip to the doctor's office for a port hook-up fluids drip.  And now, dammit, on top of everything else, you have to pee.

How to pass the time?  Where’s the fast forward button?  The mornings are the worst:  you have a whole day of nothing ahead of you.  Trips to the ladies’ room leave you dizzy and in need of recovery.  A bath is the main goings-on of each day.  If you can make it to 4 pm without one, you have an evening activity!  A bath can last for a long time, if the other inhabitants of your home are willing to use the downstairs potty while you monopolize the only room in the house with a working lock.  (Hint: Do not light candles during bathtime in a small W.C. as it may cause a black ring to form on a porcelain bathtub all around the water's edge, causing questionable concern that the medicine you've been given is so toxic it poisons the bathwater.)

There is always solitaire, which on the ipad, doesn’t require a great deal of movement, but will cause your left hand to go numb if you play for too long due to the stress of poor circulation on the left side of your body.  Television is depressing – TLC has too many baby shows during the daytime and the home improvement channels broadcast an awful lot of reruns.  Netflix is better – especially if you find whole seasons of shows you missed (30 Rock is hysterical).  You can watch them without commercials (and with headphones), late into the night, until you finally fall asleep. 

Mail call is a highlight of each day, though not always the same hour.  Some days the catalogs come before noon, sometimes not until after 4.  Some days there are care packages (yay!) and cards (smile) to remind you that people are thinking about you and wishing they could make it all go away.  Some days come DVDs you forgot you chose, or clothes you ordered a while ago (on sale).  These arrivals make one day different from the next. 

You will love your friends for calling, even if you don't feel like talking.  It reassures you just to see a name on the caller ID.  You will marvel at the way your family continues to take care of you - every single day another sick day that someone (guess who) must devote themselves to: feeding you, cleaning up around you, keeping you company, worrying and smiling all the while.  You will say, "thank you" but know it doesn't really cover everything.

Each day, your child will ask you if your boo boo is all gone yet.  He will want you to brush his teeth and sit next to him at the dinner table and pour his orange juice and sing him a song before bed.  He will want you to get up and laugh at his jokes and play puzzles and be you again.  You will smile and cry with him, his vocabulary growing and his ever- maturing diction continuously amazing you.  You will try to answer his questions – even the hard ones without answers, about other people who have the same kind of boo boo as you – but you won’t always be able to.

You will try not to let your mind wander to sad places with unhappy endings (but you can't always control where it goes), and you will hopefully work your brain to remember blissfully innocent times when the biggest worry you had was to get all of the dinner hot on the table at the same time before someone got too hungry and had a meltdown.  You will want to kick the used clothes (not really dirty laundry) off of your bed and onto the floor so you don't have to sleep at night in the same mess you laid in all day.  

If it is the fall, or winter, you will most definitely need a hat at night because it gets very cold when you have no hair for insulation.  You will keep your fuzzy little head covered all the time (even if the hats are quite unbecoming) because it’s cheaper than turning on the heat.  (Don’t worry, there are sleeping caps that come without the Wee Willy Winky elf tail.) 

And you will need to laugh.  You will need to have someone to tell you over and over again that there is a light at the end of this long, dark tunnel.  You will need people who love you to rub your feet and tickle your back and fix your tea and try not to resent you for needing so darn much from everybody else. 


Monday, October 4, 2010

Participation in Survivor Nation

When Dan mentioned to me that he wanted to join the Light the Night Walk for the LLS (Leukemia and Lymphoma Society) a month or two ago, I told him he was nuts.  To think about fund raising, when we weren't even through with treatment yet was simply mad, right?  He is already over-worked, under-slept and under-appreciated for all of the hours he puts in to take care of me, Judah, Mooshu and the house (all while doing a very nice job of spending a good deal of quality time with his in-laws...).  To add another thing to worry about keeping track of?  Oy.

But then I got an email about the event the other day from LLS and started to think it might not be such a bad idea after all.  If I don't join in on this walk, I have to wait until next Fall to participate in a big event as a survivor.  I don't want to wait that long (remember the whole patience issue?).  So, while I don't expect to raise a great deal of funds for LLS (although they do an amazing job of supporting patients and families during treatment and connecting people with clinical trials and certainly deserve major funding), I thought I'd put it out there in case anyone feels so inclined to donate to this local chapter (Eastern Pennsylvania).

It's only recently that I've learned about how much money is needed to increase awareness - for clinical trials, about how many people's lives are affected by blood cancers, of how much support is truly needed to help just one family through a time of crisis - and dealing with money (i.e. marketing, fund raising, etc.) is not one of my strengths (unless you count spending it - I'm really good at that).

The Light the Night Walk will take place on October 23rd, registration starting at 4:30 pm, walking and ceremonies lasting until approx. 7:30 pm at the Philadelphia Museum of Art.  I am hoping to have the energy to walk (they say it takes about an hour at a leisurely pace), but we'll have the stroller for Judah (wink, wink) just in case.  I just hope it's warm enough that I can go comfortably bald. 

If you are interested in joining us - for the walk or as a sponsor (seriously, no donation too small) - please click here for further information:  Team Mama Mia's Light the Night

Thanks again to everyone for all the love and encouragement you've shown over these past few months. 


Sunday, October 3, 2010

Pity Party

That wire is just to my iPhone.  I'm hiding my port access in my cleavage.
I know what you're thinking.  She finally finished her last round of chemo, how can she be having a pity party now??  Well, when you're feeling weak and dependent (for the bajillionth never-ending day), it's actually quite easy to feel sorry for yourself.  What's even more shameful is that I had myself a pity party yesterday on LIVESTRONG Day, of all days, wearing my yellow survivor shirt to show my support for all 28 million of us to the many stuffed animals Judah drags into my room each morning.

But I did it, and now it's over (thank you, mommy).  Today I'm very happy the sun is shining and I only have to swallow 3 more 50 mg pukey p pills (the biggest and gaggiest ones known to patients the world around).  It is FINALLY October, people!!  And although it's difficult to fathom that this roller coaster of disease has been going on since May, we are now so much closer to the end of treatment then we were then.  I have the scars (and the medical statements) to prove it.

Getting accessed with Priscilla (she has the kindest smile), Dr. Henry's RH lady.
Thursday (Day 1: The Final Frontier) was a much anticipated day; I not-so-secretly feared my blood counts would be too low to be treated and I would have to wait even longer to get my last hit of the junk (thank you, Bedonna).  Alas, my counts were higher than just before Round 5 and so I was ushered into a window seat, and given my premeds (it got real silly real fast - and if we ever figure out how to upload video onto this jawn, you can see for yourself - try clicking on this: Getting Silly on Pre-Meds).  Then came the decadron push (the office version of prednisone), which gave me a very strange side effect for the first time - not listed on any website I visited - that involved my rear end feeling as though on fire while being administered.  Fun times.

After that, it was off to shiatsu with Wayne (heart, smile, sigh...) where I fell into a benadryl/massage-induced coma and he again had to wake me up to get me back to my recliner.  I promptly fell asleep, and would've preferred to remain asleep, but chose to open my eyes just in time to watch the nurse pushing in the gigantic syringe filled with what can only be compared to Snow White's evil stepmother's poison.  Completely nauseating and disturbing to watch it travel through the iv tubes and directly into your own chest.  So glad I got to witness that for the last time.

Eventually, we finished with a lovely cytoxan drip, I was de-accessed from my port and sent on my merry way.  I'm not 100% sure, but I think I may have left the clinic with words along the line of, "no offense, but I hope I never see you again..."  In retrospect, "thank you for your help" probably would've been a bit gentler or even gracious, but I just wasn't in that kind of mood.  More of a let's-get-the-F-out-of-here-and-never-look-back kind of mood.

Getting the party started...
Now.  Before all of this grand chemotherapy finale took place, of course I got to meet with the one and only Dr. Henry to ask him my accumulated list of questions about new side effects and upcoming plans for follow-up. 

How did they know I am a teacher?
In honor of my last round, we brought munchkins (certainly on the anti-cancer diet, no?) for the nurses in the office and a gorgeous bowl (made and donated by the very talented Marilyn Umen) filled with lemons and limes to leave on the plant window of the chemo clinic.  Furthermore, we gave out m&m cheerleader stickers to everyone we saw (nurses, other patients, caregivers, etc.).  Got to spread the love.

We gave Dr. Henry one of our Team Mama Mia buttons (thank you JJCARMS) and I'm pretty sure he mentioned something about wanting to borrow my purple wig in the future.  I have more gifts planned, but I'm saving them for when I get good news from my final round of scans (not until December).  I will have my next set (CAT/PET) in a few weeks, just prior to meeting with my radiation oncologist, at Abington Hospital, when we will discuss the radiation regimen to zap any remaining biatches lingering in my mediastinal cavity.

Even purple gloves???
After all of the zapping is complete, I have to wait 6 weeks for any inflammation to go down at the radiation site before conducting another set of scans to ensure any and all traces of cancerous activity have been eradicated from my person.

So although I'm still feeling physically poopy, weak, and I am yes, still bald, I do have a lot to look forward to:

#1: My hair will start to grow back (I'm told eyebrows and eyelashes and anywhere else you don't want hair to grow will be the first to arrive) on my head in about a month.  Since hair grows in cycles, not all hairs will grow at the same time.  However, something is better than nothing.

#2: My energy will return in a few weeks (yes, only to be zapped during radiation - but I have a lovely chaise to help with the relaxation).

#3:  There is a Township Public Affairs Committee Meeting on Wednesday night of this week.  Can you guess what issue will be brought to the table??

#4:  I'm searching locations for the dance party we will be hosting in a few months.  I'm getting the setlist prepared, and as soon as I can think about food again, I will get to work on the hors d'oeuvres, decor, and invitations (yes, you're all invited). 

#5: As soon as we meet with the radiation oncologist, we will have some sense of how many sessions with the zapper I'll need.  This will allow us to plan a much needed, wicked vacation to some sunny place far away from the limitations of our house (and the marching band, in particular).

#6:  At some point in the not so distant future, I will be able to stop taking a great number of pills.

#7:  Going back to work!!  Truthfully, I'm not always thrilled with the idea of returning to my full-time position at school.  It requires a lot of energy, just to do the bare minimum (which isn't actually enough to be successful).  But I miss my kids and being productive in a way that doesn't involve laying down and saving my own life.  I long for the sense of normalcy and routine (as crazy and draining as it is) that having a job (outside the home) brings.  Oh, also?  You get to talk to other adults.

#8:  Sewing pillowcases for ConKerr Cancer.  It is a delightful organization that collects new pillowcases (sewn to specific measurements) and delivers them to children with cancer in local hospitals.  At the end of Round 4, I picked out a whole bunch of cute fabrics for this very purpose, but have not had the strength to get started on the project.  It will give me a chance to be productive, while still conserving my healing energy.  Plus, you get a discount on your next purchase when you drop them off back at the fabric store!  Wahoo!

#9:  Which brings me to.... shopping!!  Not that I have any money since I'm on sick leave, but I can browse, right, Dan??  We may not need accessories, but we will always need groceries.

#10:  One word: pedicure.  I am told there are various organic nail salons in center city since we moved to the burbs.  I will be sure to review each and every one publicly (not that I plan on trying them all, but in case any of them want to send me freebies, I will be more than happy to post good things about them).  [Sidenote: Due to risk of infection, I have not been able to indulge in salon treatments such as the much awaited pedis.  While I have done my own nails for the past 4 months, in varied shades of violet, lavender and sparkly grape - thank you ladies, you know who you are - I am looking forward to a more normal immune system as well as being pampered.]

And since there aren't enough thank you's in the world, I must again put out a huge Thank You to all of you amazing folks who have been bringing us dinners for the past 4 months.  It's been quite a relief to not have to worry about getting food on the table in time for everyone's hunger to kick in.  You will never know how much we have appreciated all of the meals - made with love and by some darn good cooks.  Although I look forward to being independent again, I'm not sure how easy it will be to start cooking again (but in our soon-to-be brand new kitchen, at least the surroundings will be pretty)!

Since this post is on the longish side already, I will not go into thanking all of the wonderful friends and family who continue to send messages and pick-me-ups from near and far.  You will just have to keep your eyes peeled for the 2nd Triannual Team Mama Mia Appreciation Day, coming your way a few weeks from now.

Pre-access, of course.