Wednesday, December 29, 2010

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

Monday, December 27, 2010

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

Wednesday, December 22, 2010

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

Saturday, December 18, 2010

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

Tuesday, December 14, 2010

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

Sunday, December 12, 2010

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

Wednesday, December 1, 2010

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

Monday, November 29, 2010

Introducing... Felafel!

Felafel the Aloe Plant
I know it's been a while since I've posted anything on here, so let me rewind and fill you in on the goings-on of the past 10 days:  We visited with family and it was lovely.  I reunited with a childhood friend.  My first nephew was born a week ago!  I dyed my "hair" this morning with some Henna-based dye from WF and Dan says I look like Peter Pan.  Aside from a batch of ugly green boogies (that required a z-pack) before Thanksgiving, I've been feeling okay.  My energy still comes and goes, but I am able to do market shopping, errands, knit, laundry, etc.  This morning I even took the dog for a walk!  We got to spend some time away from the (still unfinished) kitchen and had a minute to relax before radiation began today. 

Somewhere inbetween the germs and the turkey (not all in the same place, luckily), our darling son decided that the nap is no more.  After spending quite a few days in a row crying for almost an hour upon waking, we decided that if one requires a "recovery" period from a nap, the nap simply isn't meant to be.  The past few days we have been auditioning the early bedtime/late sleep-in combo.  It went well last night, but tonight not so much.  We should have started the bedtime routine earlier than 7 (which is, apparently, when the tears come rolling in) to avoid name calling (from his time out spot, "You're stinky!"), limb flailing and screeching.  In the end, J-Mac is fast asleep wearing a diaper (I pat myself on the back for getting that on), pajama bottoms and his orange guitar shirt that he refused to remove.

Earlier this afternoon, I came face to face with the IMRT (Intensity-Modulated Radiation Therapy) machine at AMH.  Since I'll be visiting the hospital daily for the next 4 weeks, the nurses took me through the daily procedure which begins by checking in with a barcode ID (kind of like I'm being checked out in the grocery store).  I then continue through the double doors (for patients and staff only) where I select my 2 lovely blue gowns from the clean gown cabinet.  I take these fine specimens to the locker room where I change into them both (one opens in the back, one opens in the front) and lock up my belongings, taking with me the key on a little gummy bracelet that reminds me of 5th grade accessories.

After I'm changed (only from the waist up), I mosey on over to the ladies' waiting room, where I can read a magazine (or, as the case may be, compare notes/get asked personal questions by whomever is also waiting there for treatment) until I hear my name get called over the PA system to come back to the zapper room.  I'm on the green machine (each one is labeled a different color, and each patient is assigned to a specific machine), so I walk back to the door with the big green dot taped overhead, enter, and hang my first gown on the hook.

I tell the nurse my birthday (just another few months until we get to celebrate!!), then assume the position on the bench.  I lay on my back, peeling down the top of gown #2 so that my tattoos are revealed, to be lined up with the red lazer level lights.  I nestle into the bizarre blue mold they made of my upper body a few weeks ago while the nurses zoom the bench up/down/left/right to find the exact location for my body.

A sample IMRT machine.  My green machine looks a bit different - not so bulky.
After I asked a few questions this afternoon, I learned that the 0,0,0 (or very center) of all of the axes in the room is my tumor.  And it's only when the tumor is moved into the exact correct position that the high dose radiation begins.  There is an arm, moving in a circular motion around the bench (different from a CT scan machine) that whirrs and buzzes, these noises being the only indication that anything is happening.  Inside the arm there is a layer (visible only when the arm is above your head) that contains the radiation beam.  There are leaves made out of lead that form the shape of the beam (invisible) - in the shape of my tumor!  Once the nurses set you up, they leave the room and control the machine from the computers in the hallway.  I asked the nurse about covering up my very important reproductive parts, but she said that you get much more scattering with a lead cover than without, since the dose being delivered is so powerful and focused.

It's all very surreal and it's hard to know what's best to think about while you're laying on the table, waiting for the beams to do their job.  I will publish a list of my own thought choices at the end of treatment (and I'd better find something better than what I thought about today - somehow, envisioning your own death doesn't make for easy breathing), but I'm open to suggestions since so far all I can hear is the lousy Christmas music playing in the green machine room.  After 20 days of this, chances are holiday music will probably never sound quite the same to me again.

Dan came with me today (even though he couldn't come back with me, nor did we see the doctor) and after I was finished, we went to pick up the newest member of our home, Felafel the Aloe Plant!  A wonderful friend (experienced in cancer treatment) advised me to make my radiation appointments for late in the day, go home and put some aloe on my treatment areas (mediastinal! also known as my chest), a clean tshirt on top and then relax/pass out.  So we went to a local gardening store and purchased the lovely plant pictured above to assist with the healing process.  We struggled with the name for a few hours.  Prickly Pete? No, my dad names all of the mice he catches Petey.  Cactus Carl?  Nah, it's lacking warmth... Judah suggested Henry, Giraffe, and Flower, but in the end, I went with Dan's suggestion:  Felafel - it has a nice ring (not to mention it's one food that holds happy memories).

While Felafel is my radiation plant, I hope to keep him alive more than 20 days (let's just say I don't have a green thumb).  I like the idea that we are bringing life into the house - even if it's not quite what we were hoping this year would bring. 

xxoo

Thursday, November 18, 2010

Wax On, Wax Off

A sight for sore eyes: the waxing pot.
I realize I haven't been posting as regularly in the past few weeks and I have received requests to pick up the pace (from my most loyal readers - thanks guys).  I have been writing, but not posting, due to the venting nature of my content.  I want to be honest, but not totally complain-y (I save that for immediate family members and therapists only) on this blog and the past few weeks have been on the sucky side.  The kitchen is still not finished (but I will post pics as soon as blogspot stops rejecting them), we continue to have car troubles, my head is cold, the house is dusty, and I haven't even started radiation yet.  Is it just a coincidence that the "f" key on my laptop is especially sensitive?  Argh.

Now that I've gotten that out of my system, I can get back to more important topics such as hair.  Today was a momentous day in the life of this cancer patient.  I had my eyebrows waxed.  This would be the appropriate time to ask yourself, "Am I supposed to laugh?  Or is she being serious?" At least that's how Dan responded when I told him I was going to have it done.

I think I mentioned a few posts ago that my hair is starting to grow back, ever so sloooooowly, one freaking follicle at a time.  And upon close inspection (and reflection) in the mirror, I can see that many more hairs are trying to get out in the open, to the warming point.  However, apparently these hairs went undercover and have managed to get ahold of an invisibility cloak.  They are so light in color, they're almost clear.  Yes, it's true, I have clear hair.  And not just on my head, but above my eyes, too. 

Any woman out there knows how it feels to deal with hair - any color, anywhere on your body - that you believe got someone else's DNA.  To maintain a clean feeling, a feminine feeling, if you will, it is imperative that any and all of those misbehaving, wrongful hairs suffer a painful death.

Now that I've been through months of losing all of the hairs I so casually complained about for two thirds of my life, I should be more appreciative of them all - no matter where they want to grow, right?  WRONG.  My eyebrows (however difficult to detect with the naked eye) deserve to have a shape, an arch, a uniform presentation (and I'm not talking about Burt's unibrow here).  I can't let the brows turn into a jungle, just because I'm so happy to have them back.  That's like letting the grass in your front yard grow as high as your knees after recovering from a period of drought.  You still need to mow, for heaven's sake.  What will the neighbors think?

So today, after my monthly energizing port flush, I visited the lovely Rebecca, a neighbor of a fabulous friend who knows all about healthy skincare, and she did the waxing for me (and she didn't laugh!).  She was careful to shape the prickly hairs without trimming them (which we agreed would make me look like I shaved them), thus giving me the perfectly-sized, partially-blank canvas to add my own makeup to.  She also gave my thoroughly parched skin a drink via a lovely facial massage.  Good stuff.





10 days until radiation begins.  I am preparing myself now, with my complementary medicine (acupuncture and massage), a small tub of body butter (I think it's actually edible) and the will to keep myself clean, as I've been warned this is the most important tip to keep in mind during treatment.

xxoo

Thursday, November 11, 2010

Day Gone Wrong

Woulda been better off in here (or under here)
Yesterday was a day I should've stayed in bed.  Only (like most parents) I didn't have that option.  Living at my parents' house and sharing a bedroom with Judah made actual sleeping difficult.  J has been waking up in the middle off the night (which he probably does in our house too, but then goes back to sleep) and getting out of "bed" (aka air mattress on the floor next to my bed) to come over to me.  Or, he has been wetting through his diapers (which he only wears at night) and waking up soaked so we have to change his pj's at 3 am. 

So yesterday started off wrong - I was woken up twice during the night, once by the alarm clock that Judah likes to play with, and once, a few hours later, by a wet child. After cleaning him off and suggesting he go back to sleep in his bed, I was forced to invite him to sleep with me (Dan's been staying at our house because it's closer to work in the morning), so as to avoid waking the rest of the house.  I NEVER co-slept with Judah.  When he was an infant, I would wake at the slightest sigh or snort or hiccup, and while we've shared a room on more than one occasion, having our own space within that room is essential to ensure sleeping takes place.

Yes, essential.  I regretted my invite soon after I offer the option to him.  His head was on my back, his fingers all up in my sleeping cap (remember, I'm still quite scalpy and it gets cold at night).  Not a whole lot of quality sleep was happening.  Needless to say, I woke up pretty grumpy.

I went to see my therapist at PAH, who is wonderful and totally gets me (after only 4 sessions).  It often feels like she's the only one who does - and she's not a survivor, but specializes in working with cancer patients, so my emotions aren't unfamiliar to her.  It was a helpful session and I left (albeit puffy-eyed) feeling reassured that needing to maintain a constant positive attitude was not a requirement for beating cancer.

Once again, I headed to Chapterhouse (my favorite coffeeshop in our old neighborhood) and met a friend for a quick drink and bite.  It was nice to talk like real adults, even if only for a short time, before I had to get back to our neck of the woods to pick up Judah from school.  On my way there, I got into a fender bender and totally lost my mind.  When I called the police to report the accident, I was so upset the officer said (in an effort to calm me down), "Ma'am, haven't you heard about the no-crying-on-76 law?"

Luckily no children were in either cars and the damage was minimal to none.  Today I can see how things could've been worse.  But yesterday all I could think was how nothing has been going right - cancer, fertility struggles, Judah's renal scan, recovery from treatment.  At every turn there's a car that needs to be replaced, or a kitchen that's taking FOREVER and a day to get done, insensitive comments, a bill that got buried under the mess in our house and is going to incur a late fee... You name it, we've had to deal with it in the past 6 months.  I'm now ready for the black cloud to move on.

Today has been a bit better and less traumatizing.  I had a relaxing massage this morning and my whole body still smells like shea butter and honey.  Judah is napping and I am waiting for the arrival of our new over-the-range microwave (to be hopefully installed next week).  The sun is shining and we're back in our house.  Although my appetite is still not normal (after all, what is?), I am going to go have a snack of spicy tuna roll, a mini pumpkin cupcake, and maybe a potato chip or two. 

xxoo

Friday, November 5, 2010

Kitchen Impossible

The update you've all been waiting for:  what's doing with the kitchen??  Below, find some of the "during demo" photos we took last week (and the week before...).
Isn't she lovely?

Isn't she won-der-ful?

Thank goodness we still have the enormous fridge.

Love those appliances
Where are we in the process now?  Well, the floor has been leveled and the new flooring along with the base cabinets will be installed next.  Monday morning, the granite people are coming to template the countertops (and also the windowsills, which are being replaced with the slab leftovers).  Hopefully, by Wednesday, the floors will be done, all cabinets (frames, anyway) in and our old sink will be re-installed so that we can move back into the house, just waiting (for a change) for the granite and new sink to arrive.

The current state of affairs actually looks worse than this today.  The radiator has been torn out and now there is a big hole in the wall there.  Most of the electric blue paint is covered by tinted primer (thanks to Dan and my mom) and we've discovered a layer of dark red behind the fridge.  It is not pretty.

We are staying at my parents' house until we have the sink back in working condition.  Sharing quarters with my family is proving to be eventful and exciting - even my grandma (Judah's GG) has flown in from Oregon to join in on the fun!
warm head, fake wisps

Pictured here is today's attempt at the new bangs.  It allows me to wear snuggly hats (being bald is awfully cold) without looking too sickly.  There are hairs growing in (both on my head and above my eyes), but they have no color, so they're difficult to see.  My tricks are to use mineral pressed powder (thank you to Kaley for introducing me to Jane Iredale makeup), moonglow bronzer and the itty bitty brow kit to pretend my eyebrows are detectable.  The lady at the Penn Abramson Cancer Center's Faith & Hope Boutique said that when her hair first started to grow back after chemo, it also had no color.  I'm counting down the days for another month from now, when hopefully I will have enough growth for a vegetable-based hair dye.  I always wanted to be a redhead.


xxoo

Thursday, November 4, 2010

Tissue Is The Issue

Pre-hair halo, in line for desserts
Tonight, my mom came with me to a Forum held at Penn's Abramson Cancer Center and sponsored by LLS (Lymphoma and Leukemia Society) to learn more about different types of lymphomas, the latest treatments available and of course, to shop at their cancery boutique.

While I had my chemotherapy at Pennsylvania Hospital's Joan Karnell Cancer Center and it's part of Penn Medicine, I had never ventured up to Penn (my alma mater) to see what it had to offer.  This was my very first visit to the place. 

It was roomy and seemed brand new - lots of big windows everywhere and you could see down below to the ground level from the second floor.  Kind of like a giant great room.  Up on the second floor, tables were set up with small eats (spanikopita, some risotto and shitake cakes, a bread with a slice of roasted meat and jelly), hot and cold beverages, and desserts for the noshing while the registrants were encouraged to "Ask the Experts" seated around the big room.  There were experts on coping with emotion (ha h-ha ha ha), survivorship, complementary medicine (I forgot to sign up for a free massage - doh!), and other topics, but no one on fertility (as advertised in the brochure). 
Big plate of small eats

After grazing (mini-pumpkin tarts were the highlight for me) and browsing some of the experts' literature, we decided to meander over to the Center's wig/hat/scarf/bra extraordinaire boutique (Faith and Hope).  There, I selected a car magnet (purple! and labeled, "cancer sucks" since I think it would be limiting to just pick lime green for lymphoma - all cancer sucks), a lime green wristband (gotta show some support, right?), a super cute tweed-ish hat and some bangs. 

You read correctly.  I bought me some bangs.  They fit around your head like a halo (this is how the woman described them) and then you can fix your scarf or hat right on top so it appears that your hair is peeking out from underneath.  Who would know that you have a very large bald spot hiding under the scarf??  It was surprisingly cute and I wore it right out of the shop (Like when you were six years old and you went shoe shopping?  Way too excited to put those kicks back in the box!  You had to wear them home!).  The sales lady kindly cut the tag off for me while I signed the receipt.

We listened to some opening remarks, clapped for some honorees, hugged my college roommate's parents (who had not been previously informed of my situation...) and then found our way to the conference room where we would hear a presentation on the topic of Large B and T Cell, Mantle Cell and Other Agressive Lymphomas (they really getcha right from the start, right?).

See the bangs?  Cute, huh?
Man, did this lady ever know her stuff.  She had this lovely power point to blow through and she kept spouting words like proliferate and cyclic and number/letter combinations (3qP) and coordinates (11,14)???  There is a very good reason I did not go to medical school.  I just don't have the memory for this nonsensical information (and especially now that I have a brain turned to mush from chemo).  I asked questions like What is a germinal center? (I cannot replicate her answer here - it seems it is a part of a cell from which cancerous cells can form) and Are all Large Cell Lymphomas aggressive? (answer: yes).  I felt like I was back in college, giggling at how ridiculous this specific information seemed to me (and also how essential that someone else understand it all).  Blood Cancers For Dummies, anyone?

While our lecturer/doctor was extremely knowledgeable, I needed her to present the 3rd Grade version of Diffuse Primary Mediastinal Large B-Cell Non-Hodgkin Lymphoma, Stage II, Intermediate (that would be my full diagnosis).  And how it came to be here, in my body, having started from a single pisspoor reject cell that mutated and then proliferated (see?  I learned what it meant).

Damn, there's a whole lot of science involved in cancer, and still, they don't have the answers.  How can we know (not me, we, but the collective we) so much and it's not enough to prevent it or cure it? 

I learned about autologous stem cell transplants being a possibility in case of relapse.  There is also the  potential for more - MORE!! - chemo or even another biopsy in the future, since no doctor will treat you (again) just on the basis of a PET scan (hence, Tissue is the Issue).  And while that's all so daunting, I realize it's so much better than the alternative:  to have a cancer (such as Mantle Cell, or the most aggressive, Burkitt's Lymphoma) that has zero cure rates and high likelihood of recurrence, if you can get to remission.  While I don't love the idea of more chemo or even of a transplant, the numbers we left with ringing in our ears were that for my type of cancer and treatment, 75-80% of patients never see it again.  Rock on!  Those are high numbers.

Life's still not exactly perfect.  Having radiation puts me at a higher risk of a second malignancy later on down the road (even decades from now).  Any healthy tissue that is exposed to high doses of radiation is at risk (neck, thyroid, breast, lung...).  So there's always that to worry about, even if I can recognize that my chances are high of coming away from this lymphoma for good.  Never fear, I will not run out of possibilities to worry about.

The bright side of this evening's ventures is that I left thinking (and saying), "It could be worse."  And I hadn't felt that way in a while.  Of course, I'm off to collect my chemical intake for tonight, thus helping myself to a solid night's sleep, but me and my 80% (stick to the high side) chance are cozying up with the facts.  Tonight, they appear to be in my favor.

xxoo

Wednesday, November 3, 2010

Tattoo Parlor

That's the size of my tattoo.  Is there a Philly Ink?  Sign me up.
Yesterday was a day of doctor appointments.  First of the day was with the official dr. for the school district of *****.  After braving the suddenly freezing cold temps early on a Monday morning, I managed to find a place to park near an intersection which shall not be named, but which is known for having a bad parking situation. 

Of course not having the "updated" paperwork they wanted me to have brought with me (without telling me as such), the patient care coordinator at Dr. Henry's office faxed it right over and I was ushered back into an exam room.  Who knew that the district had exam rooms??

Eventually the doctor came in, and I told her an abbreviated version of my story (which she would've already known had anyone cared to check into my medical records - which I had already given them full access to).  She was (surprisingly) sympathetic and said she wouldn't need to see me until February, unless I felt up to going back to work before then.

I thought I would feel vindicated after having shown these officials my scars and pale scalp.  But there was nothing even remotely physical about the exam, aside from the fact that I was there in person to tell highlights of the past 6 months.  I left almost feeling depressed.  A tiny piece of me wanted them to call me a fraud and say someone had gotten this all wrong.  Go back to work, Lady!  You're not sick!  But she didn't.  She looked at me with these sad eyes and said I was just a baby, the same age as her son.  Yeah.

Later in the day, I had my radiation planning session at Abington.  I arrived a few minutes before 1 pm and discovered a former co-worker was also there for her own appointment.  Wonderful to see her, but how annoying that it had to be there, of all places.  After we started to catch up, I was called back to go in (they stay on schedule here, dude) and a warm, smiley technician led me to the locker room area.  Permitted to keep on my new (and warm) boots, I changed into a double gown (one open in the back, one open in the front) and waited in the women's waiting area for her to come back and get me.

I chatted it up with a few other women there (and bragged about seeing LZ on the cover of one of the magazines laid out), but then was quickly retrieved and brought back to a treatment room.  The 2 women who worked there introduced themselves while they busily prepared all of the materials they would need for the session.  One asked me my full name and birthdate (as they always do) and then took my picture.  "Smile!" she said, as she clicked, then turned the screen around to show me.

"That's me," I replied, "At least for today."  Since after all, it was the me with no hair, barely-there eyebrows and a rather pale complexion.  They instructed me kindly on where to sit and eventually, how to lay atop this weird blue plastic-covered mat, which was going to make a mold of my upper body.  The mold would help to ensure I was in the same position for each treatment.

So how does a blue mat become a mold?  That is a question I can't answer.  However, I can tell you it smelled strongly of dead fish as the inside of the mat heated and bubbled up around my arms and neck.  I spent the next few minutes maintaining this position (arms held over my head) while the ladies mushed and pushed the mat to make sure all the innards worked correctly.

Next was time for scans.  If I remember the order of events correctly, the technicians put some stickers on my chest, then left the room to watch the images of the scans as they were taken.  Now this scanner had a much bigger donut than the CT scanners I've been in before - I think it's more of a multi-tasker, seeing as how it doses radiation treatments PLUS takes pictures (again, I think).  I lay there for 10 minutes or so as I was zoomed in and out, until the ladies came back, marked me with 3 magic marker x's and then pricked me with a very sharp needle in three spots, to make (black, not blue) tiny new freckles permanent.  These 3 marks are done for leveling purposes, again, to help ensure that your body is in exactly the same position for every treatment.  They will have to program the machine to dose radiation out to specific coordinates that correspond to however your body is positioned the very first time.

I was surprised at how much the 3 tiny needle pricks hurt (do tattoos hurt this much?  People are c-razy!).  I got up from my blue mold, the ladies wrote all of my essential info on it in black sharpie, handed me an appointment reminder card, and they wished me a happy holiday (I won't be back until after Thanksgiving).

I returned to my locker, changed back into my non-hospital attire, and went back to the valet to pick up my car (I paid more for parking than I did for the appointment).  I left dazed and a bit nauseated.  After having a wonderful weekend, distracted by being away from home and pretending my life was normal, I had a rude awakening back in Cancer Land.

xxoo

Tuesday, November 2, 2010

Rallying for Sanity (including my own)

a wee bit of Rally traffic on I-95
The past few days have been jam packed with sleepovers, cupcakes, and sunshine (enough for multiple blog posts, so stay tuned).  Dan, Judah and I left on Friday afternoon for a visit with some lovely relatives in Bethesda/Washington DC.  The plan was to celebrate Shabbat with them on Friday night (dinner was delish!), participate in the Rally to Restore Sanity on Saturday and then relax together on Sunday morning, returning home/my parents' house on Sunday evening.  Surprisingly everything mostly went according to plan (barring some major I-95 traffic on the way there and back).

I was really looking forward to this weekend for a number of reasons.  First and foremost, we hadn't seen our sweet relatives since Passover (yikes!), and also because I'd been saving the Rally as a date I was hoping to have energy enough to pack a suitcase for.  We'd reserved this weekend for a visit a while ago, but were unsure of the location until this week (no kitchen=no visitors), when I thought I felt up to traveling a few hours from home.

The Rally was unbelievable.  First, we walked to the nearest Metro station (along with a few hundred thousand other people coming from the DC burbs), where the ladies (and Judah) waited while the men stood in line to buy us MetroCards.

darn, we shudda bought our metrocards yesterday
The amount of people that piled into the Metro (Judah's first time on any subway - quite an initiation) was a sight to behold.  Luckily, a younger girl saw me carrying (read: clinging to) Judah and gave her seat up to us.  Everyone else was squished like sardines, and while I could sense a cool breeze of the a/c once in a while, it was getting H-O-T.  I was tempted to take off my sweatier-by-the-second hat, but decided against it, better not to give my up close and personal neighbors an up close and personal view of my head.

We finally made it off of the Metro and out of the station (not as easy as you'd think, what with broken escalators and a half a million people and all), only to be stunned by the number of people in the streets surrounding the National Mall.  I was totally energized by the fresh air (okay, maybe because it wasn't recycled air) and the energy up on the street.  Organized groups of people dressed in the same shirts (I Heart Reasonable People), and signs that broadcast funny, clever, political, pithy, noteworthy (and not) slogans were everywhere we looked. 

After a potty stop at my sister-in-law's conveniently located office building, we made it down to the mall and finally found a picnic spot (2 hours after we'd left the house that morning).  We could neither see nor hear anything happening on the main stage, but it was enough just to be a part of the whole event.  We took off our shoes, relaxed on a pink bedsheet/picnic blanket and enjoyed our PB&J sandwiches. 

our view of the capitol bldg.
The official rally ended, but we were in no rush to leave.  The sun was shining, we had a comfy spot in the grass and we knew the Metro would be pretty crowded on the way out of the city, too.  But, once it was clear that Judah (now past his usual naptime) should have been at home, in bed, (and after Dan took him on a slightly scary potty-seeking adventure) we packed everything up and called it a day.

We stopped at the office again for clean potties, cold drinks and (more PB) snacks before "hopping" the Metro back to Bethesda.  When the train pulled into the Gallery station, everyone cheered (it had been more than 10 minutes since the last one drove through PLUS this one was completely empty)!  We all scrambled for seats (and got them), and we held on tightly as more sardines packed into the car for the next eight stops.

Judah's first Metro ride
Exhausted, we arrived back at the comfy apartment, changed into sweats and started to plan for dinner.  All in all, it was a day to remember in DC - and even if the rest of the national media paid no attention to the Rally (and it's overwhelming mobs of sane people), it made the cover of the Washington Post.

Forget the fact that Judah had a total meltdown around 7 pm that night (a bit too much activity for one napless day), focus on the great company and yummy takeout. 

Sunday morning, we were up bright and early.  We took Judah to a cute little park in the neighborhood and then walked over to the famed Georgetown Cupcakes to choose some treats to take home.


a few cupcakes never made it home
Hugs were shared, car was packed and we belted in, ready for the drive back home.  Judah took a nice nap, we enjoyed some gourmet sandwiches (made on Philadelphia bread!) and made it back in time for dinner at my parents' house a.k.a. our temporary home base.  Thanks to A and R for a wonderful weekend!  Good luck to my parents for the days ahead.


Everyone better get out and vote!! 

xxoo


ps. I will add more pics from the rally later tonight.  Check back for excellent signage.

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. 

xxoo

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.

xxoo

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.

YUM!
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."

xxoo