Monday, April 11, 2011

Stillness


Meditation is not really a class for which you can cram.  I mean, you can't exactly pull an all-nighter on Sunday to "prepare" for Monday's session.  I suppose I could do all of the reading in one night, but it's not like there's going to be an essay test the next day.  In fact, I could spend the entire 90 minutes not speaking or communicating with anyone but myself.

So the studying, if you will, for meditation class, comes in the actual doing it.  The go-in-a-dark-room-be-quiet-sit-your-behind-down-and-close-your-eyes kind.  If you don't, there is no judgment from other learners or the teacher (mostly because they don't get to ask how many times you practiced over the course of the week).  But the more you sit yourself down, the more your body reaps the rewards.

Judah asked me today if I had Still Class.  It took me a moment to figure out what he was talking about.  "Oh yes, Still Class! Yes, yes," I replied, almost laughing at his interpretation of -my explanation of- meditation.  Leave it to a 3 year old (almost 4) to boil it down to this.  But that's precisely what it is:  a Still class.  I go there so someone who already knows how can guide me to label all of the constant movement of the mind thinking, and focus on my breath.

This sometimes happens more easily than others.

Yesterday when I sat (I set the timer on my phone for 17 minutes), I was not very relaxed.  I kept thinking, "Isn't it 17 minutes yet?  Maybe the airplane mode means it's not going to sound the alarm, so I should probably check."  Luckily, the alarm did go off (a lovely harp sound) and I smiled as I got up off of my cushion.

Tonight was a little easier, although I kept thinking to myself how my mind would rather think than not-think.  Not-thinking is sooooo boring.  My mind does not want to do it.  But after a little while of not-thinking, I began to zone out.  As if I were in a sort of twilight, in between awake and asleep (it's possible I did start to doze once or twice in a fully seated position).

I know it is good for me to zone, and to doze.  And after reading and hearing lots of stories of people who have been healed by doing different types of meditation, I feel as though this is the best medicine I can give myself in the post-treatment phase of my cancer.  I don't want to do drugs, I don't have the energy or the strength for hard core exercise, and I'm very sorry, but I cannot be a vegan.  I can come close, but there are lots of foods I just enjoy too much (frozen yogurt, pita chips, rotisserie chicken!, chevre, croissants, to name a few...).  So since I no longer have a medical regimen to control my days, or divide my life into 3 week segments, I am treating myself to a more spiritual kind of recovery.  The kind that comes from not-doing.

It's amusing because I have always been the type of person who is most satisfied during and after doing.  I like to actively pursue plans and efficiently exhaust To Do lists.  And now, front and center on my To Do is -Not Do.

There are, of course, other items as well.  And these items also pop into my head as I'm not-thinking and not-doing.  Like tidying up for the cleaning lady or taking the car for an oil change, making a cd for Judah with some new kid music, pack his lunch, do the laundry... All of that other busy stuff is still there, but so is the one that instructs me to be not-busy.

And I like that.

xxoo

Thursday, April 7, 2011

Port-Free

Thanks, M!
I've been waiting since July to wear this shirt to see Dr. Henry (it's my favorite of all of my cancer-themed shirts). It was well received by all.  All good news from my check up (despite a persistent low vitamin D level and a weird allergic skin reaction to something from the port removal.  All in all, I was told to give my lungs another few months to heal from the radiation (and informed that I now have "sensitive airways" to go along with all of my other sensitive parts), but that I have a low risk for developing pulmonary fibrosis.  Since my entire endocrine system got walloped, it is normal to have mood swings (I have a witness, Dan), irregular cycles, pimples, and the like. 

Furthermore, I still have residual effects from the O (oncovin) in R-CHOP (my chemo regimen) that are causing weird tingling/vibrating feelings in my legs and feet.  Dr. Henry encouraged me to go ahead and do whatever feels good and right.  Don't look for things to get nervous about (HA! easy enough for him to say) and if you are ready to expand your family, go ahead and do so.  I don't need to wait a certain period of time in remission since there is no telling if or when the lymphoma will resurface.  He does not believe that pregnancy would cause a recurrence (which I was afraid of), but he said if that were to happen, there are multiple options for treating me during the 2nd and 3rd trimesters.  This is if we were to even conceive at all, which I in no way believe is a foregone conclusion.

Big breath.  Definitely feeling reassured after meeting with him and hearing only good things.  This afternoon it is arts and crafts here at our house.  Judah and I took an egg carton and shoe box to make his first diorama of The Very Hungry Caterpillar (I swear, it was his idea).  Will post pictures of the finished product.  Paint is drying so we can add the finishing touches. 

Next scan will be a CT in June.  Will probably start to panic about that May 1.

xxoo

Thursday, March 31, 2011

You've Been Deported

Bye, bye old friend.
Ahhhh.  Turn your head to the left.  Now, turn your head to the right.  Feel anything?  Me neither! 

As of 11:55 am, I was made 0.03 lbs lighter and relieved of my subcutaneous plastic friend.  In hindsight, I feel like I should have named it.  After all, it was so helpful, eliminating lots and lots of IV drama, safely and effectively hooking me up to meds and saline, allowing me to donate viles of blood for testing and trying its darndest to become a permanent part of my chest.  We spent many long sleepless nights together, trips to the ER, travels through the PET/CT scanner.  That little plastic dude was a really a true companion, reliable even for an MRI, and right up to the end, for a squirt of antibiotic before the removal procedure.

Seriously? No sedation? Hmm.
I had been wondering what it would look like in there, under my skin, almost a homegrown part of my body by now.  Is it like when a tree grows around electrical wires?  Would my tissue, my veins simply make new paths around this little guy?  Well, apparently there was a substantial amount of scar tissue that had grown around the port, and this required a good deal of tugging and cutting to get him outta there.

But let me back up a minute or two and give you a clearer picture of the morning. 

Dan and I waited in the Radiology Registration room for one of the IR (interventional radiology) nurses to come and fetch me.  We waited and waited and finally, she arrived, bringing me through all of the double doors (authorized personnel only) and back to the familiar sounds of the IR prep/recovery room.  I have lost count of how many times I have visited this place.

Jeff Buckley's Last Goodbye
I got the first bed, by the door, and hung out for a few minutes while the computerized-vital-sign-taker gave my arm a tight hug and my heart rate was deemed normal (thank goodness for modern pharmaceuticals).  I changed into my gown and was then approached by a radiology resident to sign the consent forms for the hospital.

This tends to be my favorite part of any procedure:  discussing the risks and even Worst Case Scenario.  I mean, how strange is the time when someone is about to intentionally cut you open and you are not only letting him, you're asking him to do so.  You sign a piece of paper that says, no matter what happens, I asked for this.

under the sterile curtain
Next up, I got wheeled into the fancy schmancy IR operating room (even fancier than the one where they put the port IN), just in case something went wrong and the catheter got stuck, they would have to do a more invasive digging job that would require the use of x-ray machines and for me to go under general anesthesia (hence WCS).  You know, just in case.  I decided to refer to this room as the Just In Case room.

As soon as we arrived, people began to prep me, sterilize the area in question and talk to each other about the procedure.

Nurse #1: So why are we removing this port?
Nurse #2: Finished treatment.
Nurse #1: All done?
Me: Yup.
Nurse #1 (shimmying around the room): Woo hoo!  Port Out! Port Out!
Me: Yeah, it's good times.
Nurse #2: And she wants to take a picture of it once it's out.  She has her phone right here.
Nurse #1: Okaaay..

aw, isn't he precious?
It was about that time that the radiologist/surgeon guy begins to stab/poke/pinch me with what I'm certain was a very large and thick needle.  He prefaced this by saying, "You are going to feel a small pinch while I administer a LOT of local anesthetic."  What he meant to say was, "I am going to thread an extremely sharp, humongous, pointy thing through your skin many many times without numbing it first and it is 1,000 times worse than when you get a needle in your gums at the dentist, so hold onto something and try to remember your lamaze breathing."


Ow. Ow ow ow ow ow.  I have had plenty of pain (real pain, not just a bruised knee or a sore throat) in the past few years, so I'm pretty clear on what hurts and what is just passing discomfort.  This was real, hurty pain.  The doc advised me to watch some videos on my phone, so I began to watch the one on youtube of Judah laughing at 5 months old.  I watched it about 5 times before I realized that it may be distracting to the doctor as well, so I changed it to Will.I.Am's "What I am" from Sesame Street (since all of my/Judah's "favorites" are from sesame street), and eventually to Vanessa's Wedding Surprise, which always makes me happy.
Bump? Gone. Happy me.

Since I had been given ZERO sedation, you can say that You Tube got me through the big needles at the beginning, the removal of the catheter (no drama, phew), and the sharp pain (enter even more local numbing agent) of the cutting out the port in the middle and then the stitching me up at the end.  Paste on a little glue and call it a day.

I'll admit, when the port was finally out, and the doctor proclaimed, "You have been de-ported," I began to cry.  The nurse standing next to me noticed and asked if they were happy tears.  "Um-hmm," I nodded.  Tears of incredulous emotion, of fear of the future, of relief, and surely, happy tears.

Now, no showers for 2 days (good thing it's not 90 degrees out like in July when I got it in and couldn't bathe), and no lifting more than 10 pounds for 10 days.

Aside from the port removal, today was also a milestone in another way.  My handicapped automobile placard expires tomorrow.  That's it.  No more easy parkin for me, it's back to the circling, parking in the back (or, of course, the drop-off).  I truly am slowly returning to normal, even if only on the outside.  Gotta start somewhere.

I've been looking forward to the last day of 3-11 since this came in the mail.

xxoo

Tuesday, March 29, 2011

Monkey Brain

Final? port access: bloodwork for the port removal
Apparently when you are practicing meditation and your brain is jumping around from one thought to the next and you are almost unable to focus on your breath at all, this is called "monkey brain".  I frequently experience monkey brain during my time on the cushion.  And I find I'm not necessarily thinking about my To Do list, or being afraid of death, but often more trivial things like cupcakes.  And then once I get cupcakes in my head, I cannot seem to get them out.  In between focusing and refocusing on my breath, I compare frosting from different cupcakeries (Georgetown vs. Velvet Sky vs. Brown Betty vs. Dozen, for example).  Each has different textures and flavors, and getting hung up on them makes me hungry.

So, like I said, monkey brain.

Just a few of the tools needed for a port access.
But I also find myself making astute observations during this quieting time.  Unfortunately, it's very hard to remember them afterwards since a)I suffer from chemo-induced memory loss and b)I'm trying my best NOT to think, just to breath.  Last night, during deep relaxation in class, I was lying on the floor, trying my darndest to focus on the teacher's voice, breathing through my feet (whatever that means), when what sounded like an alarm clock in another room in the building started blaring awful terrible tinny pop music.  I found myself not just wishing that someone would shut it off, but that the music never existed in the first place.  Seriously, there are ears that enjoy hearing this?  I don't remember a time when this ever sounded good to me, and certainly not while I'm trying to peacefully listen to the sound of my body breathing.  I've never been good at tuning out sounds, so I guess that's something else to add to my list of challenges.

Fortunately, I am not criticizing myself for this (that would be counterproductive), but rather noting it and moving on.  I am trying to be in a place with no self-judgement, only loving-kindness, or maitri.  But more on that later.

***

Hear ye, hear ye:  I am getting my port removed on Thursday.  For such a small piece of equipment, this feels like a big milestone.  I've read on some cancer forums that some oncologists recommend keeping your port in for up to 2 years after your first clean scan, you know, just in case.  Luckily, mine felt quite comfortable allowing me to schedule the de-portation pronto.  And while I'm sure I'll have some soreness there for a long time, I'm hoping it will lessen as the years go by (fingers crossed for years going by).

This morning, a beautiful box of produce arrived from Suburban Organics.  I purchased a deal on Living Social a few months ago and had been waiting until Spring to schedule a delivery.  See how beautiful?  And very little packaging!  Plus, they reuse the boxes and liners (when you get your next delivery, you return them).  This is sort of a test run to see if we can use all of the food in here (and this is a small box)!  I like that I could substitute anything on the list with something else in season (up to 5 substitutions), so I did not have to get a bunch of swiss chard if I wasn't really going to cook it.  I like zucchini better.
I think I'm in love

In other news, I have enjoyed video chatting with my kids at school the past few weeks.  I even read a few books to them over the computer.  People continue to ask me when I am planning on returning to work.  I have mixed feelings about this (the returning, not the asking).  On one hand, I know I'm physically not quite up to the job yet.  My breathing continues to feel as though it's through cotton balls, I get light headed easily and I still need a nap around 2:30 every afternoon.  On the other hand, I am not ready to call it a year.  A year of my life to cancer.  I know it could be much worse and I know there are other ways I can frame it, like this is time to heal, to take care of myself, to bring my body and mind back to a place of strength, yadda yadda yadda.

But any way you look at it, it's still time that took me away from living freely, from my job as a parent and as a teacher, necessary but sucky time that put us further away from having another child... And so I am still grieving for that time lost (or stolen).  Clearly, I don't have an answer for when I'm returning to work.  For now I will continue to e-visit and iChat with my kids, cook yummy foods, practice yoga and meditation, make puppets, sew, get my port removed, and rest up.
Argh.  and Shiver me timbers.

xxoo
My first pirate puppet: Henry of the High Seas

Tuesday, March 22, 2011

Meditate

Ooh, maybe I'll meditate in Hawaii!
So I started taking a Mind-Body Intelligence class last night.  It runs for 8 weeks, an hour and a half each week of guided meditation and then you are expected to practice daily on your own.  The book that we're reading to go with it is called The Wisdom of No Escape by Pema Chodron and focuses (so far) on treating oneself with loving kindness. 

Initially, this seems silly, right?  Aren't we always thinking of ourselves?  Shopping for food and clothing for ourselves, cooking for ourselves, maybe even exercising for ourselves?  We value ourselves plenty.  But then again, I think back to last year, when I really did not value my health (or did not think it was necessary to value it).  I waited many months before going for a chest xray that my doctor advised.  While I made time for my job and my family, I did not think that taking time away from my busy everyday business was really necessary, until of course, it was.

So now I find myself on this path, to figure out who I am if I am showing loving kindness to myself.  This is new for me, even though I believe I've always paid good attention to myself.  Apparently, it wasn't enough.  What appears selfish and luxurious must now become essential, i.e. yoga, massage, regular exercise, scheduled doctor visits, therapy.  Wow.  That's a lot of extra-curricular activities for just one person.

Last night was my first foray into meditation (aside from yoga, which is different).  We sat on our cushions (I was the last to arrive and I did not get a purple one.  Hrmph.) and tried to follow our breath.  We were told to acknowledge any thoughts that distracted us from our breath, and to just label them "thinking", then to return to the breath following.  Sounds simple, right?

At first, it wasn't too hard.  I think having had experience doing yoga gave me a toe up on what it feels like to focus on breathing.  But then the voice in my head (and I was surprised to discover that the voice is very shrill and speaks quickly) tried to steer me to my To Do lists.  I tried visualizing placing my thoughts into a basket, then sending them down the street riding on a tricycle.  This made me smile, but did not bring me back to my breath. We sat for about 20 minutes last night before she dinged a little chime to bring us "back to the present".  This confused me a bit, since I thought the whole point of this was to be very much in the present.  I suppose a better way to term it was to bring us back together, taking the focus away from the breath.  Apparently this is called concentration meditation.  And if we just practiced this type of mindful breathing for the next 2 months, we would see decreased pain, anxiety and improved circulation. 

I'm intrigued.  Since we will also be introduced to other types of meditation (spelled alarmingly close to medication... hmm...), we will have a library of calming resources to choose from by the end of the class.  However, I don't know what this means about how my own daily practice might evolve.  Will I become calmer?  Less agitated?  What about sitting for 3/4 of an hour and following your breath makes you less anxious?  I am curious to know the why and how of it all.  I do, like many, enjoy facts.

Many thanks for staying with me, dear readers, both in the thick of the cancer jungle and now here in remission.  I hope you took a few minutes to browse through the NYTimes collage of cancer survivors.  I found it too difficult to sum myself up in less than 150 words (perhaps I'll give it a try later tonight), so don't look for me there.  I appreciated the diversity of the pictures and emotions that many people were able to articulate.  Although I've written close to 100 blog posts (almost all of them more than 150 words), I still don't know if I've really captured the experience of the past 10 months.  But I'll keep trying.

xxoo

Monday, March 21, 2011

LINK

If you haven't already explored the newest NYTimes Cancer Collage, I strongly urge you to do so.  I found many of the snippets (linked to photos) encouraging and inspiring.  

NYTimes Cancer Collage

xxoo

Wednesday, March 16, 2011

Cell-abration

 Yesterday was definitely what my mother calls a 5 star day.  Amazing, life changing news of my (mostly) clear PET scan, a visit to school to share the results, flowers from my family, celebratory dinner at Cin Cin (yum yum)... It just kept getting better and better.

I am feeling like the black cloud might, just might be moving out to sea. 

We have Spring and later, Hawaii, to look forward to (thanks to my talented mother, Shutterfly, and all of our devoted FB friends who voted).  I can now Skype with my students, thanks to the wonders of modern technology.  Lots and lots of happy times.

Still.  I can't help but know that the drama isn't gone forever.  I feel good about planning things in the next 3 months (that's when my next scan will be).  That sure beats limiting my plans to the next 3 days.  I am a teacher, goshdarnit, I don't do this one day at a time thing all that well.  I like to be planned.  And prepared for every possible scenario.  But you already knew that.  And I'm sure you've figured out by now that I've matured in discovering it's impossible to be prepared for EVERY possible scenario.  Cause I sure as hell wasn't prepared for this one.

I really am focused on the word remission.  It feels dreamy to think it, to say it, like it can't be true.  Prior to Tuesday's results, I did not permit myself to fantasize (more than once or twice) about the possibility of good news.  I did not envision myself screaming from the rooftops, or sharing the news with random passersby (sort of how I did after giving birth to J).  I decided it would be much more logical to think about where I would take my scan disks to get a second opinion.  Or what hospital I would have my SCT.  Or what I could do to survive the next 6 weeks until it was time for a re-scan to double check the bad news.  I know from experience it's much easier to prepare yourself for the worst news than to be totally blindsided by it.  Okay, well, I think it's easier, anyway.  Dan tends to disagree.  Then again, he's mostly an optimist.  Me?  Not so much.

"Good health will be yours for a long time." NO JOKE.
I woke up this morning as a different person.  I am a mother, wife, daughter, sister, teacher, friend, writer, and now, cancer survivor.  It easily brings tears to my eyes to write that.  I've made it to remission, even if I do relapse at some point in the future.  I feel so lucky to have heard that word come from my doctor's mouth, directed at me.  And proud of the good cells, who prevailed over the bad guys, even if just for now. 

I cannot wait to get this port out of my chest (hopefully they can fit me in next week?) and go forth towards the direction of my life, whichever way that is.  Tonight I'm enjoying the sweet taste of relief and heading off to bed.

xxoo