Sunday, August 17, 2008

Our Cancer

Leroy Sievers is gone.

Those of us who have been reading his "My Cancer" blog over the past couple of years new this day was coming. Recently, it was clearly nearer than ever. Yet the shock of reading that he passed away suddenly this weekend still reverberates.

For those who live in "C World", Leroy's blog became more than just another person's account of their cancer journey. For many, it became a community -- where comments were left and exchanged that brought together many who were experiencing their own battle. Leroy was someone who clearly read people's comments, as he'd often be inspired for his daily post by something someone else commented on the day before. When a long-time reader lost her battle, he wrote the next day not about his own experience, but her -- and the impact she had clearly had on so many in the "My Cancer" community.

A few weeks ago Leroy appeared on NPR's "Talk of the Nation", and followed his appearance with a live podcast. I think I asked some stupid question regarding how Leroy had dealt with health insurance issues (I must have been knee deep in fighting over some bill or another that day), but the other questions were shockingly forward: Was Leroy prepared to die, how did he want to spend his final days, did he have a "Do Not Resusitate" order, etc. Leroy never flinched, never waivered in giving an answer as direct and honest as the original question.

There are plenty of times that I feel like I don't want to write about VB's cancer any longer. When something happens that becomes a part of who you are against your will, there are times you'd just like to put it aside and forget that it ever happened. In those moments, however, I've often thought about Leroy, and his decision to get up every day and write something, anything, that would bear witness to his experience and the experiences of so many that did not have the platform for expression that he did as a reporter. Leroy's expample inspired me to open up my computer and follow his lead.

We who live and fight and struggle against cancer have lost a great voice, one who dared to put out to the world the unfliching reality of this experience. May all of us who choose to tell our stories, in whatever way, continue to carry Leroy with us.

Tuesday, August 12, 2008

VB 4, C 0

"Code Blue".

We all know what that means -- at least, those of us who have kept at least one medically-related show in our viewing repertoire since the dawn of television. When you're sitting in the lobby of Chez Healing, eating a bagel sandwich while your son sleeps two floors above you in an MRI machine, your mind goes places when you hear those words over the intercom.

Somewhere nearby a life is possibly ending. Did anyone see it coming? Is this how they expected it to turn out? What hopes and dreams are suddenly being placed into the "never mind" pile? Are the parents there, watching this unfold?

Will George Clooney or Noah Wyle show up in time to save them?

I'm going to hell, I think to myself as I move beyond my shallow curiosities and focus on the breakfast food before me. Of course, I understand that this belittling of what is most certainly a nightmare for someone is my own emotional defense, designed to keep myself from going down the road of envisioning, feeling, preparing...

But there is no need to fear the worst today. Once again VB returned from his MRI a little groggy from the anesthesia, but still "free of disease".

A day without our own Code Blue -- a good day indeed.

Tuesday, August 05, 2008

Thank you, Thank you

1. Thank you to members of the "Stem Cell Cyclists" team, who as of last weekend had raised over $100,000 while participating in the Pan Mass Challenge with VB as their "pedal partner"! Since last year's ride took place while he was in the hospital, it was a great treat to be able to hang out at one of the water stops this year and cheer the team on!

2. Thanks to everyone at my "old job" for the send-off. I miss you all already.

Yes, I have an "old job" because....

3. Thanks to everyone at my "new job" for making me feel welcome! I know I've yet to speak of it here, but I was offered a great chance to expand my horizons and take on an ambitious project covering the whole "vamp state". There's a lot to learn, but I'm a week and a half in an loving every minute of it!

4. Sadly, NO thanks to the seizure gnomes that took it upon themselves to once again dance around in VB's head -- not once, but twice in the last week. It appears that our little man is growing up fast, and while his weight has not gone up, his little "I think I can" metabolism decided to ramp-up a bit and drop the effectiveness of his medication dose. So we've upped it yet again, and hope that the gnomes go back into hibernation...Forever.

5. Thanks to Chez Healing and VB's treatment team -- who are willing to address our concerns regarding the "other" potential reason for #4. They've moved up VB's next MRI date to this coming Tuesday, August 12th (it was supposed to be later in the month). So we only have to wait a week to put to bed any fears that the gnomes are the least of our worries.

6. Lastly, thanks to everyone who has donated so far to my Jimmy Fund Walk effort (see the link on the left of the page if you'd like more info on this shameless plug). Truth be told I've yet to pound the pavement in preparation -- as the new job/gnome battle has kept me quite busy. However, mentally I'm already walking, and isn't half the battle psyching oneself up? I guess we'll find out after they carry my over the finish line in September.