A hard Thanksgiving

November 26, 2011

I’m sorry, but it was very, very hard to be Thankful this Thanksgiving.  I am, of course, enormously grateful and thankful and blissed-out over the success that medicine has had in extending my life four and a half years after my cancer was discovered in June of 2007.  As I look back over the year, I know just how lucky I am, luckier than friends lost along the way, and as my children are now in school and settled in small desks next to their own friends, present and future, I am lucky, we are lucky, and grateful.

but the grateful this week is overwhelmed by the unceasing pain.  I have not left my bed or downstairs chair since the chemo last Thursday, and at least four days (Sat, Sun, Wed, Thurs) have been lost entirely to the constant burning pain of the knot in my spine, just at my waistband.  All week, I sit in my chair downstairs with family, desperate not to lose another day to bed.  We talk, we read together, my fingers play with my Kindle Fire as family members come in and out of the room, company changing as the lighting does, throughout the hours of the day.  The pain is so intense I can barely see my loving family through it.  As my children climb onto my lap for snuggles, they push the shoulder this way or slide on my leg that way, and the knot on my spine cries out in pain. I do not push them off.  I mask my gasps and shift the children just a little to one side or the other, burying my head in their hair and hoping that they don’t hear, and that their brother doesn’t see my pain as he looks up from his talk with Grandma across the room.

They do hear, of course, and they do know, and they do listen, and they are on guard this week, running to my side when they hear a gasp and burying their heads in my chest as I grunt to get up from the chair.  They need reassurance, and I give it to them wordlessly, the only thing I can give today, this week.  A hug.  A pat.  A snuggle, a smile.  With or without words, telling them always Mama loves you.

The guilt of not working on the big projects and finishing the things that need to be finished is everpresent. I can’t decide, my body can’t decide, whether to rest for now so that I can recover and be healthy to finish each project when I feel better or to push forward and finish it right now so that it gets done in my lifetime, and so I have kind of a mid-illness crisis when I do get control of the pain, however briefly, and I don’t know whether to spend my time working or resting

but I always know to spend my time with my children, reading, or talking, or playing Yahtzee, Connect 4, and matchbox cars.  This is right, no matter how good or bad I feel, and I push myself to have these good times this week for them, for me, for family.  I push myself past the pain and into the love, as long as I can, and when I can push no longer I rest, asking my pallative care physician to increase the medication.  He does, questioning no longer, adding more medicine Thanksgiving night, as if this were the normal thing to do on the evening of a happy, family-centered holiday.  More pain control.  More meds.  Will it work?  For how long?  I don’t know, but I hope that it will work, and as I sleep I relax a little, the knot loosening, and I smile.  It worked.  It worked on Friday, and for part of the day today, and each day was a quiet day well spent.

At the end of the holiday, I am still grateful for the years given to me after the diagnosis, and the opportunity to be my children’s mother, even on the hard days.  To do research and to enjoy my work.  To push for good and to support those doing good.  To come back to the church and to seek for ways to use my talents on the days that I can stand to stand.  To be there for friends and family and children, and to make each day count.

I am so tired now, though, and now, I must rest again.

A favor to a friend, Susan McCorkindale, and in gratitude for the clinical trials, care, and pallative care given to me – if you live in the D.C. area and are interested in national health care issues, from health care reform to navigating cancer care: what every patient needs to know, please consider attending the FREE symposium next week at Georgetown Lombardi Comprehensive Cancer Center: “Fighting a Smarter War Against Cancer: Linking Policy to the Patient.”  It’s a great lineup, and the speakers are top-notch, from Senators, to Law professors to pharmaceutical companies, researchers, doctors, nurses, and pallative care.  Check the schedule, and see if you can attend all or part of this amazing opportunity at Georgetown.


Homebound

November 22, 2011

Well, it’s time to face it.  My pain level is so high, my energy level so low (aided and abetted by the pain medication, chemotherapy, and other drugs), and sitting is so uncomfortable (a batch of cancer cells sits on my spine in what must be a lump, pushing on me when I sit normally) that I’m just not getting out much anymore.

Add a sick little boy to the mix (just the crud that’s been going around the schools), and none of us have left the house for days.

But are we really missing much?

Our groceries come to us via Peapod.  News of the day is delivered via TV, internet, or dead tree on the front doorstep.  Mail moved to email and automatic payments long ago.  Movies are easily streamed, and even my prescriptions can be mailed to me (although that requires a bit of advanced planning and recurring prescriptions; since mine have been changing a lot lately (more pain meds), we fill scrips on the way back from treatment).  My hairdresser cuts my hair out of her home, near the school, and her cuts are even better than the fancy ones downtown.  I can order anything I need through the internet, including clothes from Lands’ End and Christmas presents from Amazon.  With Amazon Prime, I can even get a razor delivered in 2 days, as I learned from Stimeyland and her mother one day this summer.

I can browse stores and ideas via Pinterest, buy via store web sites, try on in my own living room, and send back what doesn’t fit or flatter.  The boys and I got our fall outfits this way, and it’s actually been rather fun — particularly without the whining of physically visiting store after store.  There are few things that we can’t do via internet, aside from my cancer treatment — it turns out that even my pediatrician makes housecalls if a child gets very sick on the weekend (what a surprise!  But it’s easier than opening up the office, he said, if you both live nearby.  It was so nice for us all to be able to be there for his sick appointment, instead of worrying at home while I waited for my husband and son to return).

And as far as social media, a culture that I adopted out of necessity after my cancer diagnosis and treatment in 2007?  Well, both new and old friendships are alive and well using Facebook, Twitter, and our blogs, along with phone calls to keep up with the everyday.  I used Second Life to attend conferences I couldn’t attend then, reveling in the freedom I suddenly had to talk to other people I knew from around the world while our avatars stood in the same room together, listening to panels and enjoying virtual wine and cheese.  It didn’t have to be that complicated, of course; now we know that Ustream works just fine for panel discussions, and WebEx for smaller meetings.

I even have a groovy new tablet computer called the Kindle Fire that allows me to do some social media tasks (email, Facebook, blog reading and commenting) from from bed without the excess heat and weight of a laptop when that angry spot on my spine acts up and it’s impossible to sit too long at my desktop in the room next door.   It’s larger interface is perfect for blog reading and commenting is a breeze with the virtual keyboard and memory functions – a huge improvement over smartphones.

The Fire also entertains me, bringing web sites, ebooks, real books, tv, movies, music, Suduku, and crossword puzzles right to my bedside without the startup time of a laptop or the heaviness of its footprint.  It’s a new generation of accessibility – as I was happy for my laptop in 2007, I am grateful for my Fire in 2011.  As it turns out, there are workarounds after workarounds and we’re doing pretty well, all things considered.

I do, however, miss a few things quite a lot.

  • I miss going out with my friends.  Seeing many of them over at The DC Moms and on their own blogs or Facebook is awesome, but it’s just not the same.
  • I miss greeting the other moms at school dropoff and pickup, exchanging smiles and good wishes for the day.
  • I miss going to church with my family, little heads resting on shoulders and valiant little boy attempts next to me to sing the morning’s hymn.
  • I miss going to work, cheerfully saying hi to colleagues in the morning and brainstorming together over lunch, even though I still can do my work here, at my desk, or from bed if necessary if the pain is too high or poorly controlled.
  • I miss taking walks through the park with my little ones, although I suspect I did that more when they were very little than I might today, with 7 and 5 year olds.  Still, I had planned to go walking in the woods with them, enjoying the smells of Fall and the forest, so very many times … and, this year, we haven’t.

I do miss these times away from the house, although I see now that what I miss are the times with people, not the times running around doing errands or shopping for this or that or finding just the perfect whatever-it-is that’s on my list today.  As I have good days, and I know I will have good days again, I want to remember to prioritize times with people.

In the meantime, I’m going to start commenting on blogs again.  Calling my friends just to talk.  And letting you know how very much you mean to me, keeping me sane and happy, even though I’m almost completely homebound.

Nothing is permanent.  Although this is how I feel today, as my meds are only poorly controlling the pain, I was able to get out two weeks ago, and it was marvelous.  I had a wonderful time at the Women and Mars Conference.  It took me days to recover from attending just two panels that day (and then chemo the next day), but it was absolutely wonderful to leave the house and share what I’ve been studying lately.  By the way, the panel discussion was livestreamed and recorded – you can view Astronaut Catherine Coleman’s remarks and the  Women and Mars Panel 1 from this link - the panel begins at about 1:19 on the clip, and I give my prepared remarks at about 1:48 into the clip.  As a bonus, Dr. Jim Green, the Planetary Science Division Director at NASA, awarded me the Planetary Science Division Public Service Award a few minutes before the end, at 2:52; at this point, I was simply jello.


Should I buy the new Kindle Fire?

November 22, 2011

Well, it depends.  What do you want it to do for you, and what problems with your current devices are you looking for it to solve?

My Kindle Fire arrived at noon on Friday, and it hasn’t left my hands since.  (Full disclosure: I paid full price and am not being compensated by anyone for this review.) I use my smartphone, laptop, and desktop every day, for different uses, but I bought the beautiful new Kindle Fire to help me in a very specific instance:  to consume media and keep up on my social media networking while I’m relaxing or otherwise away from the computer.

The 7.5 inch screen (the size of three iPhones together) is welcoming and easy to read, the perfect size and weight for holding in your hands, whether sitting or relaxing comfortably or standing in line for an appointment.  The Kindle Fire has a glossy glass screen, black case, and a state-of-the-art dual-core processor, changing the quiet e-reader Kindle experience into more of a multi-media internet experience, capable of meeting most of a casual internet user’s needs now – and hopefully all of our social needs shortly, once their apps store is more mature.  Indeed, when I think about how I plan to use this tablet, e-reading is just one of my options.

In just four days, the Kindle Fire has already become my go-go device for games, movies, social networking (albeit not with some adaptation), notes, reading web pages or books online, and keeping up with my friends’ blogs – and knowing the number of blogs I’d like to read every day, that alone would be worth the $199 investment!

The Kindle Fire excels at:

  • Quick launch – the device and its apps and browsers are up and running in under a minute;
  • Quick loading of web pages – they say, thanks to the Amazon Silk browser.  For independent testing, you’ll have to look elsewhere, but the described approach is way cool and the reason I bought mine.  Since the browser relies on past visits to web pages to “preload” your requests in the cloud, my Fire is still “learning” my favorite pages, but I am very excited about this!;
  • Easy access to your most-used applications – placed on the bottom shelf of the Kindle’s bookshelf-like opening screen.  While this is really a grid, of course, it makes it look both homey and high-tech.  Flipping through the apps with a flick of the finger makes them fall gently to the side, not unlike the album imagery on the iPod and iPhone;
  • Immediate access to Yahoo mail – keep the Yahoo app on the bottom shelf, and you’re up and running in less than a minute.  Read, reply, forward, it all works fine, and the built-in virtual keyboard (standard layout) means you won’t lose any time typing.  Email triage is easy using the Fire, just like on smartphone; answer or delete the easy ones on-the-go, and you’ll have more time for the ones that spawn work back at your desk.  While a major drawback is the lack of a gmail app, Gmail can be accessed easily via the “web” tab at the top of the screen;
  • Blog reading – the screen size is perfect for reading two or three column blogs!  I can read most blog posts in a single screen and then scroll to the comment area to leave comments easily, in type large enough that I can see what I’m saying.  You smartphone commenters know what I mean – this solves the problem!  I’m already reading more blogs than when I primarily used my smartphone to check in on my friends – and leaving comments is a perfect gift for the holiday season;
  • Movies or TV using the Netflix app – while I’ve seen others complain about quality, I only experienced pixelated viewing for a moment while the selected movie loaded; after that, it was beautiful viewing and I could hold the screen in my hand;
  • Movies and TV shows from Amazon – tens of thousands are free with an annual subscription to Amazon prime.  A 30-day subscription comes with the device to encourage users to get used to it and make it their go-to subscription site.  Since we already pay for Verizon, which includes on demand, and Netflix, I don’t see our family continuing this additional $79 subscription unless it proves much better than Netflix, but it’s an option.  Without Amazon prime, individual tv episodes are $1.99 and movies are $2.99;
  • Games – Angry birds, Sudoku, and crossword puzzles look great on this tablet, 3 times larger than the iPhone.  I would show you with a picture, but my kids are pretty busy playing the birds in the background so I can write this post;
  • Ereading – Now, my husband was an early adopter of the first Kindle, so he should be here selling the virtues of ereaders for reading books on demand, but this is the first time I’m dipping my book-loving toe into the waters of reading books on anything but paper. It’s taking some getting used to, but the instant gratification of going from a conversation on Facebook about a new book to actually reading the first chapter for free in a matter of seconds is pretty amazing.  Plus, for me, I can now read all his purchases for free :-)
  • Ereading for less – There are an incredible number of books available from the Amazon store for under $4, but new books are often $10-$15, offering savings over their dead-tree cousins, but not as much as one might expect.  The Kindle does let you borrow books from your local library, happily – and from other Kindle users once a month!;
  • Ebooks – Small ebooks are everywhere now, and the Kindle Fire helps me read them easily and quickly. The more difficult part is finding quality ebooks on interesting topics; but
  • Buying Kindle books from the Amazon storefront is easy peasy.  In fact, buying *anything* from the Amazon storefront is very, very easy, as my first-day-of-Black-Friday purchases (with free two day shipping, or $1 song credit for free regular shipping, included with Amazon prime!) can attest.  (Oops.)

Despite Kindle heritage, the Kindle Fire is built on the Android platform, making this essentially a first generation tablet, with all the expected issues.  The two major flaws are the accuracy of the virtual keyboard and the immaturity of the app store.

On the keyboard:

  • I find myself leaving periods between words instead of spaces.  The space bar must be just a little shorter than on the iPhone or my desktop keyboard, which will take some adjustment on my part; and
  • Clicks and taps on the touch screen are not always acknowledged; some are missed, while occasionally the screen catches up and whisks me away to a site I selected over a minute ago.  This is disconcerting, but they should be able to fix it with a software patch.

The Appstore for Android (note: not the Android Market) is pretty small, particularly for someone used to the bounty of the iPhone. Major apps are still missing, including Facebook, Twitter, and gmail.

  • The Kindle Fire comes preloaded with what looks like a Facebook app, but get this - the app is actually just a shortcut to the Facebook web site!  It loads m.facebook.com quickly, sure, but there is no interface especially sized or suited to the Fire;
  • The “Twitter Mobile Web (Kindle Fire Edition)” in the app store is again just a shortcut to the Twitter homepage.  Now that is Just. Not. Right.  (and also an explanation for why I haven’t been on Twitter this weekend, but that is going to change!);
  • There’s no Tweetdeck app for Fire either, but I’m enjoying using Seesmic for the first time in place of the native apps, and hoping that Tweetdeck, Facebook, Gmail, and the others create Fire-friendly apps very, very soon.

In the end, the Kindle Fire is a fantastic e-reader, blog reader, and shopping device that also handles email and games very well.  It fails on social networking sites (other than blogs) only because of the apps currently available in its app store; I hope that this will be remedied soon so that I can recommend it wholeheartedly.  If you’ve been putting off buying an e-reader or you’re frustrated with the options available for reading blogs away from your desk, the Kindle Fire may just be the answer for both your next purchase and what to buy that special someone for the holidays.


Chocolate Chip Math and Button Box Sudoku

November 14, 2011

first grade workThis week has gone really, really well.  I had my first treatment of the new chemo (and I’m so relaxed about it, I don’t even remember its name) and recovery this weekend, and I’m back on track for a good week this week!  But first, moments that I must share to remember, moments with my little ones first, and then a big ol’ braggy bit at the end.

Chocolate Chip Math

Each day, I rest from 12-3 so that I can be bright and awake when my kids come home after school.  We have a snack together and talk about school, then do homework and extra learning before I release them to play or watch a little tv at 4 (and I head back to bed for a bit so I can be up again for dinner).  Extra learning is just what it sounds like, a little extra learning on top of their day at school, time when we can learn together, adding new concepts for them to think about.  I try to riff off of current events, like mapreading if we watched a tv show about baby penguins in Australia, or math drills at Widget’s request.  Little Bear likes to join in the extra learning, pulling out his dot-to-dot workbook if Widget’s doing his workbook, and he feels so grownup about it.  I love that he’s proud of what he’s learning, and so I’m starting to make lessons just for him.

Enter Tuesday afternoon and the chocolate chip snack.  The kids were in high spirits, and, with a twinkle in their eyes, asked for chocolate chips for a snack — “just” chocolate chips.  Well, I didn’t have a good reason why not, so we sat down together and picked out a few chocolate chips for each plate.  Then we got a little playful with the chips, asking little brother to count them (counting to 6 is easy – he doesn’t have a problem until 17, but I was *not* doling out that many chips for counting!) and big brother to group them into groups of twos and threes.  Big brother Widget is just learning about multiplication, so we manipulated the groups and talked through some of the early ones.  2 groups of 3 = 6.  3 groups of 2 = 6. How can that be the same?  That’s right, the commutative property that his teacher taught him with math last week.  What if we only have 1 group of 6?  Let’s say the sentence out loud: 1 x 6 = 6.  And so on and so forth, with numbers changing as chips slipped into eager little mouths, proud of their right answers.

Little Bear joined in, wanting to be big like brother, saying the only math sentence he knows, “2 plus 2 equals 4!”  We celebrated that with him and showed him what it meant on the plate (he memorized it long ago, because it makes the Grandmas smile and fuss over him).  Using the chips, he could easily see that 2 plus 2 does equal 4.  From then, we were off to the races!  1 + 3 = 4, 2 + 2 = 4, and so on.  And then when he snuck a chip off the plate, what else was there to do but subtraction?  All of a sudden, 4 – 1 =3!  And 3 – 1 = 2!  And 2 – 2 = 0 as he stuffed the last two into his mouth.

We collapsed in giggles, having had a wonderful time with each other, learning new concepts and reinforcing old ones with chocolate chip math.

Button Box Sudoku

Widget, my 7 year old, is fascinated with numbers.  He also loves to peek over my shoulder at Mommy’s game, which is often crossword puzzles or Sudoku.  He’s been asking to learn crossword puzzles, and that’s soon, but I’m wondering if maybe his little brain would really enjoy Sudoku too.  The thing is, although the game is about manipulating numbers in a grid so that no number is repeated in any row or column, Sudoku actually has no math.  So, in theory, you could play the game with other shapes, with coins, with legos or Polly pockets accessories, or simple buttons.  I pulled down Grandma’s old button box yesterday and we set to play.

First, Widget chose five different color buttons (blue, green, red, pink, and white).  He selected five of each from the button box and laid the first five out in a column, showing me that he could do that with no repetition.  Then, I challenged him to make the same kind of column again, but without repeating the color of the button in the column to the left.  This wasn’t hard for him; he caught on quickly.  The third column went easily as well, but the fourth?  Ah, now this became tricky.  I watched his little brain work it out as Little Bear and I sorted buttons at the table, choosing our favorites and getting the others ready for a good wash (Grandma’s button box was a little rusty. Ew.).  He manipulated the buttons swiftly and surely, and got both columns four and five to work out, offering me a delighted high-five at the end of the game.

To play again, we added a set of silver buttons and one more of each color and set out to make a 6×6 grid.  This Widget accomplished quickly and easily, going back just a few times to rearrange earlier columns as needed.  I think we’ll do this a few more times and then he can join me in Sudoku next Friday and Saturday as I check back into bed and recover from chemo.

A little bit of bragging – for the Grandmas and faraway friends

The kids are doing great.  Widget brought home his first report card this week and got Es on everything but language arts.  We are so proud of him.  He told me this morning that he thinks he can get an E in everything by the end of the year.  I encouraged him, of course, but reminded him that what matters most is that he is learning, that he is a good friend, and that he is kind.  We’ll work together on the rest.

Little Bear has big news!  He lost his first tooth on Saturday!  He lost it in a swordfight with Daddy and Brother, which is just about right for this happy little sprite, always ready with a toy or a game, always asking us, “which one would you like?” and then settling into a game of legos, of cars, of battle, or just settling in for a hug.  He keeps me company while I’m resting with these hand-size games of his, and I am never too tired to fly the helicopter over the scene or to race the bad guy car away from his multitude of fire, police, and rescue trucks giving chase.

Oh, and one more thing. About that cancer.

We talked about Mommy being tired this weekend, and about the cancer.  I don’t know how it came up, but it flowed naturally and I answered their questions as many times as they wanted to ask.  I told them that I have new medicine now to fight the cancer, and that my back hurt so much on Saturday (they could tell – as LB would say, “duh..”) because the medicine is fighting the cancer cells, and the cancer cells are trying to fight back.  The cancer cells get angry (inflamed) and so it makes Mommy tired, and Mommy’s spine hurt for a while.  But that’s good news, because the medicine is stronger than the cancer, and the medicine will win.

Both kids brought up their fists and pretended to fight the cancer with me for a minute.  My eyes locked with my husband’s, and we finished the conversation, reassuring them that Mommy is doing the best she can, and that you boys are BIG HELPS.  That bringing Mommy drinks to help flush the medicine through her body is a big help, and that playing gently with Mommy instead of sword-fighting gives her body time to rest and get better.  And the thing that helps most of all is just to have fun together and to hug each other, because that makes Mommy feel strong as her body fights the cancer.

It came up again this morning, in a natural way, as I helped LB dress for school, but I’m not as worried as you may think.  After I answered his question and reassured him a bit, I asked LB how he was doing with all this: “Are you okay, Bear?”  “Of course, Mommy,” he smiled.  “I just love you.”

And that’s where I’ll leave it today.  The kids are ok.  This cancer-fighting chemo/recovery routine is becoming normal for them now, and while we have our moments (“Why can’t we go stay in the hotel this weekend?” the kids pouted after we had to cancel our trip to Cousin Andrea’s wedding this weekend (the horrendous pain in my spine made it very difficult to sit up and an 8 hour drive impossible)), it all comes down to love.  These days are far from normal, but the moments, ah, the moments, are perfect.

The love of my babies inspires me to fight each day, and to remind them each day how very much they are loved.  But enough of that for now.  Pass the chocolate chips — we still have a lot of living to do!


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