When I took Shakespeare in college, Professor David Stewart introduced me to "time" in a way I had never before considered. I already knew about relativity, always chuckling with the recollection of the Einstein anecdote about how sitting for a minute on a hot stove seemed like an hour, but sitting on the lap of a beautiful woman for the same minute seemed like a second. For Stewart, there was even more to time than relativity. Each play we read had multiple aspects of time: how long it took to write it, how long it took to read it, how long it took to act it, how much time passed for the characters in the play. Time sometimes proceeded linearly and sometimes skipped around, though it could also cycle and double back on itself. For magical plays like A Midsummer Night's Dream, time is suspended and ceases to exist, at least temporarily. Then, of course, there were those Einsteinian aspects of time--did the reading/watching/listening seem to fly by quickly because you were so engrossed or did it drag from lack of appeal. I'm sure I have forgotten the more subtle points of Professor Stewart's lecture.
What sticks with me is that all these ways of looking at time seem to apply to the neuroblastoma world. We count time passing through linearly accumulating milestones (months/years since diagnosis/transplant/relapse, how long a particular treatment works, how many birthdays and first days of school we get to record). We have the grind of each day--sometimes the mundane stuff like laundry and grocery shopping and sometimes the stress, tedium, and terror of hospital stays. We watch the dragging drips of toxic IVs, yet wonder why the days with our precious babies fly by too fast and slip from our grasp. Days at clinic blur into each other like we are caught in Bill Murray's Groundhog Day. On the one hand, we don't rush because we want to savor each moment and linger in the delight of our children, just in case we don't get to keep them forever. At the same time we jam more into the lives we live, just in case we don't get to keep them forever.
All this became crystal clear when I read the following entry, called "Save Room in the Bucket" on Spencer Dolling's website (those of you who do the daily tour of the cyber NB world know that Spencer's dad Steve is the most articulate and irreverent of all NB bloggers):
So I should natter on about the 15 knot breeze on the flat water rounding Shark Spit with the sun low in the western sky and the sails full and the boat nicely heeled and try to express in words what it feels like when you know in your heart that you’re living one of life’s great moments and it doesn’t get any better. And the clams in the lagoon off Manson’s Landing where we dug our limit of 225 in ten minutes with our hands and didn’t even disturb more that 4 square feet of sand. And the stunning solo anchorage in Grace harbour where the boys managed to find the perfect rocks for us to jump from. And rock crabs with white wine. And watching the boys jump off the top deck of Al and Sue’s boat with 4 life jackets and 2 boat cushions on so they hit the water like wine corks at terminal velocity. And the biscuits - the ones that went with the chowder of prawns and clams and fresh cod. Swimming in the lakes. Kayaking. The little dog named Pepper. And Foster’s octopus which stayed with us not quite long enough to be given a name before going back to the deep. And just sailing from one cove to the next with those perfect hours where Spencer devoured the new Harry Potter, only disturbed occasionally when there might be a cry of “Dolphins!”
But I won’t. Because it would be misleading. Life isn’t entirely perfect.
Sometimes it’s only moments of perfection otherwise encapsulated in crap.
Because in reality we didn’t even know if we were going to get away or not. The days before we left, Spencer had fever and was in hospital getting transfusions and IV antibiotics. On the way up, we stopped in Powell River. Foster and I went shopping while Tracey and Spencer went for blood work so we could be sure that platelets were stable enough for us to disappear into the wilds of Desolation Sound.
Ten or twelve days of perfection, and on the way back, more fevers and back pains and a stop in Nanaimo hospital for more IV antibiotics. And it would be nice if the antibiotics were fighting infection. But they were only a precaution. The cultures were negative. The pain and the fevers are the cancer. And when we got home it got worse. Much worse. Tylenol and codeine weren’t cutting it. Spencer asked to be taken to hospital in agony. IV morphine did the trick.
And today, there was a bone marrow biopsy and a new plan. And the pain is better managed. And new chemo is flowing. And tomorrow, Tracey is organizing a barbeque, because there are too many kids and parents on 3B stuck inside their rooms on beautiful summer days. And fear is replaced by hope and we move forward.
So the real trick is to encapsulate the crap and let the enjoyment of the moments triumph. Otherwise, you’re just stuck in a bucket of sh*t.
And you really need the bucket for the rock crabs and the octopus.
That's not to say that I actually ever realized what I was trying to do. Certainly it has morphed considerably over time (there's that word again). Oh, at first it was easy. Erin was sick. Very sick. Our friends and family wanted to know how she was doing, if she was in or out of the hospital, if she could have visitors, and what was coming up next on the schedule. I complied with very "informative" entries. Here's the first one ever (actually it was an email that we sent which we later incorporated into the website. At the time, I had no concept that anyone who didn't already know us would have the slightest interest in Erin's illness. In fact, I thought most people who received the email would trash it without reading it):
August 2, 2002
Walter and I have put together an email list for Erin's many friends and family members who want to keep up with her progress. We are also in the process of setting up a web site. We will be sure to let you know when that is up and running. Thanks to you all for your many, many messages and very sweet and special thoughts! If you are someone who already receives too much email, just let me know with a reply, and we will take you off this list. (If this email is a shock to you because you have not heard that Erin was sick, email me and I will fill you in)
We got home from Texas Children's on Tuesday evening (July 30). Wednesday and Thursday were kind of rough days with fatigue and vomiting. Erin has lost about 10% of her weight in the last week and a half. Today we seemed to have turned the corner. She is still pretty tired and not too hungry, but at least she is keeping food and drink down. The doctors have been very pleased with the way Erin has tolerated her first round of chemotherapy. They are being very aggressive (so being sick is expected), because they really think they have a chance of getting rid of the tumor and keeping it away.
Erin had blood work done yesterday. All of her counts were in the low normal range, which was a positive sign. That means that Erin's activities are currently not restricted. We expect her blood counts to dip by Tuesday or Wednesday next week. Then she will have to be a lot more careful about who she is around for a week or so (this is normal for someone in this regimen). She takes an injection everyday to help build up her white blood cells.
We go back to the clinic in Houston on Tuesday for a check up and more blood work. Currently, we are scheduled to begin the second round of chemotherapy on Thursday, August 15.
Then, Erin made it through treatment and began acting like a kid again. Through the home page, I worked desperately hard to convince myself that the neuroblastoma chapter of our life was written and behind us. I envisioned Erin's story as an inspiration to others facing treatment. I experimented with humor and adventure tales, with the facts dropped in for leavening. I was fiercely proud of the poise and ferocity that Erin had exhibited during treatment and wanted everyone to know the spark that was Erin. At some point (prior to relapse in March 2005), I became convinced that my mother was the only one reading Erin's website. I didn't have much to say about Erin's health, and it felt a little too self-centered to presume that anyone really cared about the exploits of a healthy girl and her family.
After Erin relapsed, I had a legitimate reason to continue updating, but no desire to go back to "just the facts, ma'am." In addition, for most patients in the world we live in, relapse underscores the question of time. How much do you have left and how do you make the most of it? The home page became a mix of treatment specifics mixed with a healthy dose of "us." As time passed our nightmares of counting the days until the end failed to materialize. Erin responded to treatment. Currently, daily chemo is more akin to the daily vitamin than to the agony-inducing treatments that could be our lot. At many points during the last twenty-one months of stability, I've wondered why I write, and more importantly why you read.
My motivation. Hmmm. Some days, I write so that Erin can read her story through my eyes when she's an adult and has cancer behind her, an elaborate baby book, if you will. Other times, I write so that there will be something to hang on to if she's ever gone. I write for me, because I need to vent, entertain, teach, exhibit my love. I write because people keep reading, though I really have no idea why. I write because another chunk of time has passed, and Erin is still my treasure.
So I will continue my balancing act--enough medical news for the truly concerned, some cute pics and other relics usually confined to baby books, occasional musings for my own benefit, a little advocacy and awareness building, and humor when it strikes me. In essence, I will capture Erin's time and repackage it for anyone who wants it. And who knows, perhaps her biographer will find it useful. You may not have heard, but Erin is not supporting Hillary Clinton's run for the Presidency. When I ask her what she had against Hillary, she said, "Nothing. It's just that if Hillary is elected than I can't be the first woman President of the United States."
Since you've made it to the bottom of this mammoth entry, drop me a line and tell me why you stopped in and/or why you read all the way down. I'd value your comments.