Susan is ok

If you’ve heard that I’ve been ill, in pain, or in the hospital; stopped oxycontin and suffered from withdrawal, had pneumonia, low bp, had trouble breathing, went on oxygen, can’t catch a breath, keep coughing, get dizzy when I stand up, and am completely losing my hair, it’s all true. I’m in the hospital but I’m finally able to sit up for a bit and I’m feeling better. I hope to go home today.

We are ok. We are together. We love each other and we love you. We are blessed.

Typing is difficult, because I’ve got the O2 clip taped bulkily round my middle finger, but I’ll catch you all up as I can!

Advertisement

A hard Thanksgiving

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.

Hip, Hip, Hooray!

Thanks to the 3 weeks of radiation therapy and the steadily increasing pain medication, I have felt NO PAIN SINCE MONDAY.

Honest.

Not. a. bit.

Well, maybe a little bit, but nothing more than anyone would feel after sitting at her desk working for several hours each evening!  That’s right, I’m able to work again, to do some analysis, and to write more than just this blog post each day.  With my doctor’s support, I’ve increased my meds to a much higher level, and as the pain subsides, I’m easing back into life.  Into playing outdoors with the kids.  Into working with the Women in Planetary Science working group to identify issues for the Women and Mars conference next week (I’m speaking! Check out the agenda here and sign up for the livestream if you’d like to watch any part of the conference from home!), doing supporting analysis, and making slides.  Into a taste of my old life, for the few days before chemo starts again, as long as I take it a few hours at a time.

It feels good.

Radiation tricks and Halloween treats

I try not to dwell on my pain, but since July it’s been such a HUGE part of my life that it seems impossible to see past it.  The pain comes because the cancer cells are building up in my bones to such an extent that they are bulking up the bone a little bit, actually making the bone larger.  This is a problem only because the membrane on the outer surface of the bone, the periosteum, is full of nerves and doesn’t particularly like to be pushed on.  It reacts, sending nerve signals like crazy, and the patient feels terrible bone pain.  This bone pain may be steady or it may increase over several days as the bone cancer cells increase.  Pallative radiation therapy is one way to reduce the pain in a particular spot to increase quality of life for cancer patients.  This Fall, I was in so much pain in my lower back that it became impossible for me to sit up for more than 15 minutes at a time.  By irradiating a spot just below the base of my spine 5 minutes a day for 15 days, this treatment killed the cancer cells in that section of bone, reducing its bulk mass.  As the periosteum was no longer pushed, it stopped sending pain signals to the brain.  I now feel no pain there and I am able to sit up again.  Hooray!

Meanwhile, however, the cancer cells infesting my other bones have grown unchecked by radiation or chemotherapy, and now they’re more of a problem. After 4.5 weeks without treatment, the pain in my ribs, hips, neck, and spine has rapidly increased, making even the simplest of daily activities, like doing laundry or going outside for a walk, impossible.  My pallative care doctor has been helping me try to keep up with the pain, but rare has been the moment that we’ve gotten it just right.  The pain just grows, and I get grumpier and grumpier as the days go by without lasting relief.  I’ve just gotten permission to take more of the opiates.  I hope this time it works.

…

While I have been in terrible pain for the last few days, there have been good times intertwined and moments worth keeping.   Last weekend, my husband came home from his business trips, my parents left, and we were alone, the four of us, for some much needed family time.  Daddy caught up on chores, the kids played upstairs and downstairs, and Mama sat in the recliner downstairs and worked on Halloween costumes.  Widget was a tornado this year, his choice, and we had spent several days the last week planning out the costume, drawing design ideas and x-ing them out as we thought of better ones.  A design failure was discovered at the last minute, and we laughed together as we fixed it, pasting scraps of ribbon on the back to reinforce the sewed-on strings that held dozens of minature goats and chickens, pots and pans, farmers and pieces of tree scattered about.  When he puts it on and turns rapidly in circles, the pieces whirl out from his shirt and it does give the impression of a hurricane!  A hurricane, Widget reminds us, not a tornado.  This is important, because he learned from his friend S that there was once a Hurricane Widget (well, his real name here) and he is pleased to share his name with a hurricane.  He was even more pleased to show up to school, costume stashed in his backpack, a big kid ready to surprise his friends.

Little Bear revealed this weekend that his costume is to be not just a dog, but Super Dog, a sidekick to his friend D’s superhero costume.  Unfazed (I had 48 hours!), I whipped him up a cape out of an old fleece blanket and a big red button, and he was adorable in last year’s costume and this year’s cape (Let’s call that going green).  Little Bear had a wonderful time, even though he had stripped off both layers in the warm classroom by the time I arrived to help with the party, and when I said he could leave his shirt off underneath he thought that was hi-larious.  “Dylan!” he cried, “I am naked under these clothes!”  He sparkled in his parade, a proud Super Dog amidst a tiger, a dog, and a dozen superheros in this, the youngest class.

We trick-or-treated that night, after a quick afternoon playdate making old-fashioned popcorn balls (did you ever get those in your Halloween bag? We always did, thanks to the same neighbor up the street.), and while I thought I was going to drop, I just stood at the sidewalk and smiled and smiled as the children ran with different packs of children throughout the neighborhood, all lit up for the holiday.  We saw @urbanmama on our travels, a special treat since neither of us were close to home.   (Then, lots and lots of rest.)

Today we are back in school, and my meds are working better.  Widget made me a sign this weekend, at the worst of the worst, when I lay discouraged in bed, and I keep it close to me now, the first-grade scrawl urging “Feel Better, Mommy!” cheering me as I push on to normalcy.  To the new normal.  To pushing myself to work when I can, but rest when I can’t, and to know always that it is enough.  Today I pray for a lasting solution with the meds while we wait for the time when I can begin chemotherapy again (end of next week), the chemotherapy that will hopefully kill more cancer cells in my bones and help me reclaim this part of my life.