Monday, May 4, 2009

What the Hell is My Problem?

So I tell myself that I will just check the caring bridge page for this young man who was diagnosed just a couple months before me and who is the only person whose trials with this disease I have consistently followed thoughout this mess. His mom keeps a journal to keep us all up-to-date on his treatments, but also his life (college in the fall!), and her neuroblastoma activism, and also others in the fight, usually when they are in crisis or have passed. This last part is why I sometimes have to stop reading the journal. It just gets to me for reasons I don't think I need to explain. Luckily, you can usually tell by the first line of the journal if there will be a happy ending or bad news, and if I was smart, I would've just turned off the computer after that first line today.

As it turns out she wasn't reporting a cancer-related death today; just the freak occurance of a 19 year old dropping dead of a totally unexpected heart attack. But there were messages of support to other families in crisis (when I say crisis here, I don't just mean the crisis of living with cancer, I mean the heightened crisis within the crisis of relapse, or crisis of all crises, end-stage disease). So what do I do? I follow the links, from one caring bridge page to the next, and read one mother's agony after the other. I only stop when I find a truly depressing story: a beautiful little girl (not yet in the double-digits, I'm sure) who is riddled with tumors and starting radiation this week in an attempt to shrink the giant mass that is crushing her nerves and causing severe pain.

Only after my masochistic mind has found these words am I able to tear myself away. And before I can even ask myself why on earth I would torture myself in this way, I have my answer: I have scans again this week, Thursday and Friday. I can't bear the thought of my life, such as I have reconstructed it, being snatched away from me again. But the fear is there, so I seek out the tragedy of others in similar situations as a gateway to my own emotions. I think back to the last year of scans and see an AB pattern emerging (my nephew is at that level of math where you learn simple patterns like 'tonight I will sleep in the back with mom & dad, but tomorrow night I will sleep in grandma's room like I did last night--we'll make a pattern!'). Last June I got the first scare: a swollen lymph node or something on my CAT scan. But then in July no change, so things seemed okay. But come September the suspicious node has begun to glow on the MIBG--the surgeon showed me the digital image before he cut what turned out to be Neuroblastoma out of me, I let me tell you, it was as bright as an old-fashioned christmas light (remember the big bulbs?). But after blasting my life away with a few rounds of dynomite - I mean chemo - my scans looked more like they did last June, maybe even better. So according to my pattern, this time should be bad news.

But life is not a pattern. I had a perfectly lovely BBBB pattern going for two years before last June. My nephew's sleep pattern turned out to be grandma-mom&dad-mom&dad-mom&dad and so on. That's the kind of pattern I'm hoping for now.

Send a little extra no-cancer love my way this week to help me get there. Thanks.

PS - I am going to go finish packing my books right now -- Julia and I are moving into our first apartment together in Brooklyn and we are very excited (and also a little stressed). But one cool thing as I sort through all my stuff is finding all the gifts and letters and cards from all of you who love me and have helped me get through these last 3 and a half years. It really helps to get even a little card in the mail. I had saved them all and really enjoyed re-reading them, but in an effort to down-size my things as my new home is smaller (especially the closet, for those of you who are familiar with my current walk-in!), I had to get rid of most of those cards. So I am now shamelessly requesting that you send new ones! I am wary of posting my address in so public a forum, but I promise if you email me or post a comment here, I will get back to you with where to send any notes, packages, or other love-in-the-form-of-mail. :)


Chuck said...

Yes please with the new mailing address at


TysonArdo said...

Send me your new address to and I will shower you with Ohio related goodies...
I'll be thinking of you.

Anonymous said...

I'd like the address too! sending you all kinds of love even when you don't hear from me. Baby Bubba is doing well and I'm about to email you some pics :)

Chuck Lynd said...

I am sending you love right now and will ask my circle of friends to send theirs this week. Take deep breaths... and maybe a few tabs if kava - hey, scans + moving is quite a lot of stress. *) Dad (who also needs your new address :-)

Julie said...

I need your new address too!

I just saw this post, so I'm a little slow, but I'm so glad the Alejo-set pattern is holding!!!! I too have felt the morbid, cathartic, terrifying pull of other's stories about their struggles with disease. Here's to holding the BBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBBB pattern forever.

I love you,

Julie said...

I take it back. I'm going to cross my fingers for those Bs to be eventually interrupted by a C--or better yet a 0, with 0=cancer has miraculously disappeared completely and will never return!

sonya said...

Thank you soon much for texting the good news yesterday!!! So so good, obviously. Where are you and Julia now in Brooklyn? Hope to see you at the end of May--I'll be around from about the night of the 28th through Monday the 1st or so I think.

Anonymous said...

Just saw this. How did the week go? Still sending love & healing thoughts.

Meems said...

hi roser- i miss you and its been forever and im thinking of you always. send your address to, i will send...myself! with tacos and a burning desire to watch whatever is on fox. -Meems

lmurphy13 said...

send me your address too - and despite our failed attempts at connecting those couple of times, we should try again! i'm not working (but don't mind coming down to that area) this summer, so just give a shout.

Sarah said...

Hi Rose,
thinking of you, sending you hugs.
gimme that address of yours,
Sarah Pez

Rae said...

hey rose-

can i have your new mailing address and email address? the one i have has a "permanent error." then you will receive goods in both forms.