The gift

December 20, 2011

One of the most difficult things about being homebound with a serious illness (or two) is remembering that (most likely) things will get better.  That you will have enough energy to go up and down the stairs again.  That you will be able to play with your children again, and not just from your pillow or your chair.  That you will soon put away the oxygen, and plan days that include leaving the house.  That you will be able to do, and see, and go … and be YOU again.

The past two weeks have been terribly hard for me.  I don’t do sitting well.  I tried to fill my days with learning about my new tablet computer (love it!), with reading classics (like Andrew Lang’s Blue Fairy book – did you know that the real story of Sleeping Beauty has hardly begun when she is woken with a kiss?  In fact the whole castle awakes, and they don’t live happily after – there are ogres!), and with keeping up with the latest on Slate, Salon, HuffPo, and the Daily Beast.  But those diversions were not nearly as fun as they could have been had snuggling into the soft recliner and reading been a choice.

I just wanted to get up and do things again.  Encourage my kids with games and playtime more of the afternoon instead of just homework and learning in the half hour after school.  Eat dinner with my family (I collapsed in bed at 4 or 5 p.m. most evenings, exhausted from the day, and nauseated by warm food after the chemo).  Work on my computer again, catching up on what I’ve missed, and plotting new work for the spring.  Make and address all those Christmas cards (Will they make it there by Christmas now? Who knows?).  But my body didn’t cooperate.  It wanted to sit.  Or sleep.  And the cough just wouldn’t go away.  Every time I went upstairs – or over to the fridge, even – I had to rest, lie down, and use oxygen to get my breath back.

And then, Sunday night, Marty came to visit.  The novena my church family is saying neared its close.  We continued our family time for Advent.  I finished the pill bottle of antibiotics, and I began to recover from Thursday’s chemotherapy and bone strengthening infusion.

That night we talked and talked and talked, well into the wee hours, and when I tired we went upstairs or put my oxygen on.  But Monday — I can’t explain what happened Monday, but after talking in the recliners downstairs for a while, I got up and began to fuss with my fish tank.  It had suffered during my illness too – you can barely see the little guys through all the muck on the walls!  We talked and laughed and scrubbed the walls.  We scrubbed algae off the glass, walking back and forth to the utility sink, and we laughed when Marty almost dropped the tank hood onto the Science magazines below.  We made that sucker shine, and we talked about her getting a fish tank too (before she left, I sent a dozen beautiful guppies with her, sharing new life in my house with hers).  We watched a movie together, The Help, that we’d planned to watch the day of its release in the theater.  We played with the boys, and I comforted Widget after school, when his earache flared, and Marty tried to engage them in a craft.  We addressed Christmas cards, as we do now, the week or two before Christmas, no matter how I’m feeling.  And then we went downstairs and I ate dinner with my family – and I mean ate.  After three weeks of illness, where I lost 25 pounds because I couldn’t even stand the smell of warm foods, I ate a whole dinner, including seconds.  We were up and doing things the whole. entire. day.

And today I feel like a new person.  Wait, that’s not quite right.  I feel like myself again. I woke up this morning ready to go, showering, eating, and helping the boys get ready, starting a blog post when they went to school.  I’m smiling again, and hopeful, and ready to get back on track and start again.  I went to prayer group, alive and alight with the happiness that comes of being reminded that today is a new day, full of possibilities.  Including possibilities of me getting things done again, of games to play and talks to have and maybe even taking Widget to church tonight for practice – for he is going to be in the Christmas Eve nativity with his class!  Today I feel alive again.

I’m bemused by the thought, juxtoposed with the past few weeks, and I laughed out loud as I related it to my friends this morning.  How could such a difference happen so fast?  And yet, it wasn’t fast at all, was it?  It took days of sitting and waiting and resting, weeks of praying, and treatment after treatment at the hospital.  I believe in prayer.  I believe that medicine works and that my treatments will be successful in extending my life and improving the time that I have left here.  Why, then, was I so surprised yesterday that I finally felt like myself again?

On Sunday morning, I sat quietly with my husband before they left for church.  We were grateful for the day, another day granted to us after such a scare at the hospital, and he whispered softly to me with amazement that I was still here, saying, “This Christmas is God’s gift to us.”  Yes, it is, I agreed, and sent him off with a kiss.  We will celebrate this Christmas together with joy, just as we celebrate God’s gift to the world over 2000 years ago.

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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.