Friday, August 17, 2007

Does Anybody Really Know What Time It Is?

August 17, 2007

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 t
he 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):

I suppose it’s time for the post holiday update where I tell everyone about the wonderful vacation and all the things that we did and make people generally jealous or inspired or whatever. Not just the “Isn’t it nice that the cancer family got away for a couple of weeks” but more along the lines of “Oh my God, why can’t we have vacations like that?”

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.


And so in a single entry Steve Dolling has captured the essence of what I think I have been trying to do with Erin's home page.

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.


  1. Vickie,
    I check Erin's website several times a week to make sure she's still doing OK. I enjoy your style of writing! You've challenged me, inspired me, and entertained me. The Buenger family holds a special place in my heart!
    Michelle Braden

  2. I don't know why I read several people's blogs (but never post comments). I don't follow cancer kids per say, but I saw your link in Sarah Smith's guestbook and found myself here a few times and wondering how you were doing. It's strange, but Erin first reminded me of the girl in Bridge to Terebithia (never saw the movie, but just having read the book many times in elementary school) with her short red hair and spunky tomboy attitude. I have also learned a lot about cancer and what you guys have to go through. I'm also from Texas (Beaumont), so I guess I felt some sort of kinship in that reguard too. Well, that is just an explaination for why I read it..many healthy people keep blogs, so there's nothing wrong with that. I hope you continue, and with Erin healthy. -Kristen

  3. I read every day, because in 11 1/2 years of teaching. Erin touched me as no other student ever did. And not because of the cancer, but in spite of it. Erin is brilliant, in every sense of the word. She was always ready to make the next jump with me, and even ahead of me when we were learning something new. I was always fascinated by her take on things, the way she saw and understood, and then led others to understand. That was Erin the student; and then there was Erin, the little girl. Until my son, she had the only smile I have ever seen that could completely change my outlook. Now she and Matthew share that smile. I choose to forget most of the time that Erin has NB, because I can't imagine her not being able to beat it. However, that means that I sometimes take her for granted. Reading her website helps to keep me grounded in reality, but not wallowing in doubt and dread. I may not get to see her all the time, but I still feel connected. Thank you, for being the Mom that you are, and for sharing your wonderful child, with all of us. _Jennifer Steen

  4. I read Erin's page as part of my constant effort to assure myself that I'm not insane, not alone, and that my wife and I are are not alone in battling NB. I desperately need to read other parents feelings, insight, worries, and anything else they are willing to share (other than just the facts) to confirm that, although sometimes it may feel this way, we are in fact not alone.

  5. I check Erin's page for updates almost daily. But it took me a few days to find words to answer your question. I read because I care about all of you. I like to rejoice with you when your days are great, and I worry with you when they are not. I get to find out how Erin is doing without having to ask you about it each time we meet. And that helps encapsulate it, right?

  6. I check the website everyday, I must admit on those days when there is no new posting I'm a little dissapointed. I find myself wondering, "Now what in the world does Vickie have to do that is more important than updating this website?" Silly, I know...I find myself constantly in aww of you, Erin, Walter and Davis. I often wonder how in the world you manage to stay so on top of things, so in the moment, upbeat and happy when you never really know what is lurking around the corner. I've learned to live my life a little differently since our paths have crossed. I treat my children differently, don't take them for granted, and honestly thank God that they CAN be the little hooligans they are. You all inspire me and help me keep things in perspective, I tell myself everyday, "Don't sweat the small stuff" and very often ask "how would Vickie put a positive spin on this one?" You are a treasured friend to me, Erin is a treasurd friend to Noah and I thank God for you!

  7. When Carlie's NB relapsed I searched the TCH NB support group list to look for other children who had relapsed in hopes of seeing what treatments they were on and how they were responding. Erin's info caught my eye because she was diagnosed 5 years ago and relapsed about 2 years ago... which gave me hope at a time I really needed it. I enjoy reading your updates - I like your style of writing and humor - and you can often express in writing some of the same things I am feeling. I enjoy reading about all the great things Erin is doing!
    Charon Edgington

  8. BECAUSE WE CARE.........

  9. Hi, Vickie! I read (albeit more occasionally than I'd like to) and have ever since reading your family's story in the local paper (B-CS Eagle) this past June. Initially because I thought you guys had an interesting take on life's lemon (glass is half full and it's Erin) ... exactly the approach I would hope I would be courageous enough to take if in the same situation. More so now because there but for the grace of God or fate go I (I have two kiddos of my own and I can't imagine the thought of losing either of them) and I want the positive example and reassurance of having such a valuable resource to fall back on if I ever need it. Thankfully, I haven't, but I have friends whom I've referred. Lastly I read because I love your style, from the writing to the wonderful mix of fact/fun/personal/stats/etc. In short, it's compelling, not only in the human side but also in (once again) your approach. As a writer and a mother, I admire you for both! I'm certain your daughter does, too. :)