June 8, 2008
Erin and I just finished cleaning out the van so we can live in it this week. My job included stowing all the soccer gear: three sports bags (one for my equipment, one for the team that holds the precious information notebook and the even more precious first aid kit, and one with extra gear so that Mystic forgetfulness never becomes Emergency Forgetfulness), Walter's spectator chair, and from last week, all the tryout and registrar detritus. My shed no longer has room to turn around in, but the back of my van is blissfully empty (this happens twice a year. . .during the June and December hiatuses). Erin had a larger responsibility: clearing out all the stuff that she has left scattered about in every row and all of the more than generous storage compartments supplied by the Chrysler company over the last month when she has been too busy or too tired to clear the deck.
I've had a lot on my mind the last week. Summer school is in full force (and yes, I have essays to finish grading before tomorrow morning at 8:00). I spent from 5:00-9:00 at Central Park (not new York) Monday, Tuesday, Wednesday, and Thursday discharging my interim registrar duties and laughing it up with a delightful group of volunteers that make youth competitive soccer in our community possible. Erin had Music Camp every morning, Credit by Exams, piano lessons, physical therapy, friends over, visit to friends houses, horseback riding, and of course two nights of soccer tryouts.
Sounds normal by Erin Buenger standards, doesn't it?
That's what's been on my mind. This week has seemed blissful. No constant checking about the need for ____________ (fill in the blank with imodium, tylenol, zofran, hydration or your own personal favorite). No monitoring of energy level or appetite. No wondering what's happening with counts (they're stable and good) or with hair (none falling out). We even think the chemo must have shrunk the tumor because of the relieved pain and pressure in her back. My worriometer has stopped clicking like a geiger counter in the nuclear medicine ward.
Will Lacey's dad wrote around this topic recently. Will's chemo regimen gives him fourteen good (blissful) days for every seven bad days. Here is how Pat put it on Friday when they began the 18th cycle of bad days in the last year:
He (Will) is suffering and he doesn't know why.
But I know why.
He suddenly feels awful because I just gave him 4ml of liquid in a syringe 45 minutes ago. And I didn't tell him what it was, what it was for, and that is the reason he feels terrible.
Because then he wouldn't take it.
These are all things that you accept because it takes place for 7 out of every 21 days and that is the price HE pays in order to stay alive.
That is the cost of having the 14 other days where he can enjoy life as himself.
The hard part for me is that he is unable to communicate to us what he is feeling simply because he is 3 years old.
He is alive.
He does not have to go inpatient, or even outpatient for his treatment.
His counts don't drop.
His hair doesn't fall out.
We don't have to give him shots every day.
As far as quality of life goes as it pertains to relapsed neuroblastoma we have it pretty good. It is just some days like today when the opposite ends of the spectrum are seen...so soon after making your son "take his medicine"....it can be a little bit jarring on your parental senses.
I have thought long and hard about this, and I have something to add. Just like Pat, I'm glad that The Rhino has been as easy as it has been. I'm glad that it seems to be working. I'm glad Erin has great days. It's a whole lot easier than at diagnosis when we would check her into the hospital and chemo drips would run twenty-four hours a day. We lived in the clean zone, protecting her from infections and other bugs that could lay her low. We signed informed consent forms virtually guaranteeing hearing loss, sterility, and organ failure. Everything we encountered was new and frightening.
But in some ways our situation now is much, much harder. When we started this game in July 2002 Erin's doctor handed us a road map that outlined the steps we would take to get Erin cancer free. We knew the process and approximately how long it would take. Because there was an endpoint, I could treat it like a project. I teach project management. Projects start. They end. They attempt to accomplish specific objectives. You manage them to completion. You may encounter set backs, but you re-group and keeping working towards the goal. That's what we did, and we did it well.
Now, here in relapseland, particularly in tumor progression relapseland, the bliss is all temporally finite. We start chemo again tomorrow. We hope to continue starting chemo every three weeks for a long time. The only obvious end points are set by more disease progression, unacceptable chemo toxicity, or a switch to some other treatment option (which we hope would be effective, but yield more good days).
We hope that the bad days aren't too bad and that the good ones are blissful. We hope to keep fooling ourselves that we have the energy and stamina and good luck to make it. That scientists can move fast enough to build the silver bullet that stops neuroblastoma in its tracks. That Erin's body and spirit stays strong. That Erin's tumor stays stupid and easily managed. That there enough good days to make the bad days tolerable.
We now live with more urgency and passion, and unexpectedly, much more calmness and certainty. I read it on a Nike poster in the gym: There Is No Finish Line.