Wednesday, February 17, 2010

"Do you think I'll need general anesthesia for the surgery?"

Ah, one of the "light" moments of the day when my husband asked if he would need general for his tongue/neck surgery. Um, YES! The hem/onc said he would report the surgeon for patient abuse if he didn't.

Due to some amazing people at my work (doesn't hurt to work in hem/onc), and friends--we found ourselves at one of the best centers for ENT oncology: Emory's Winship Cancer Institute. And we ended up there less than 24 hours after the diagnosis was read. (Let me take a moment to recount one of the strange experiences through all of this. After Eric was read the horrible news, Jason Mraz came on the radio singing the adult version of the song we listen with Miles multiple times a day--I'm Yours--or in our household, Sesame Street's version Outdoors. Strange, but a sign to me that things would be okay. Ah, Jason Mraz has no idea his influence on our life.)

Let me just say that I spent the 1/2 of the day working with such amazing people...and the best was when the radiation oncologist who was copied on an e-mail from the hematologist/oncologist the president of my company contacted (he is on our faculty), sent a message from his blackberry--"can we get this patient in today?" No less than an hour later, the department was calling me and we were at Emory at 2pm.

I cannot describe what it felt like to walk into a cancer center. By far we were the youngest people there, and perhaps the cheeriest. I wish I could say it was like our experience at Children's recently when Felix had jaundice. (Eric said he prefered to go to that hospital. I told him it didn't work that way. He looks young, but not THAT young.)There was no interactive center to play on,or brightly colored modern decor. The waiting room was kind of sad and scary. Luckily, every single employee was just delightful. I think you have to be to work in hem/onc.

So, we met with an incredibly aggressive radiation oncologist, Dr Beitler, who essentially put all of the wheels in motion. The next thing we know, we are seeing the hematologist/oncologist (amazing Dr Khuri), and scheduled for an MRI, PET/CT scan and an appointment with one of the best microvascular surgeons (Dr Wadsworth). All this week--and it is already Wednesday. We have personal e-mails and cell phones of everyone from the Doctors to all of the nurses and nurse practitioners.

What truly marked the experience as comforting was that every single person asked us questions like, "How long have you been married?" "Do you have any children?" "What do you do for livings?" I was like...wait, you mean we are people and not just diagnoses? Seriouly, stuff like that makes a difference. Even more so than sugar free lollipops at the front counter. Wait...those always stunk.

In terms of "answers," no one can figure out why this has happened. He is young, healthy, no problems...never smoked, chewed, doesn't really drink...

But, that's for another day. "Why" isn't our priority--it is "What" and "What to do now?" Thanks to all of the Drs (specifically Dr Beitler)we have a plan and we are on the hunt to clear this wretched disease.

First: MRI tomorrow morning
Second: CT/PET scan Friday morning
Third: Meeting with the surgeon Friday afternoon
Fourth: Eric will be discussed at the tumor board 6:30am on Tuesday

Depending on what the scanning/imaging uncovers, we may just stick with the surgery route. No matter what, he will be having a partial glossectomy and will require some significant speech therapy. We DON'T think he'll have a hemiglossectomy (1/2 of the tongue), but there will be a large portion removed. He will also have his lymph nodes in his neck explored. The hope is to retain as much functioning tongue as they can, while getting all of the cancer along with clean margins, and to see if there is any lymph node involvement. I have no idea when surgery will take place, but soon. Recovery? No idea...any partial glossectomy survivors out there? Yeah, I didn't think so.

Just going on physical exam, it appears the cancer is about 2cm, superficial and there are no swollen lymph nodes noticeable (the place of spread). The scanning/imaging will tell us more about spread, if any.

Best case scenario, we physically remove the cancer and just continue to follow-up (and will consider some chemo prevention clinical trials).

I won't go into worst case scenario, because why go there?

I already promised Eric I would shave my head if needed, but then he said, "listen, I need a hot wife. And besides, then the focus would be on you."

Touche. As lovely Ginna pointed out, 2010 is the year of Eric. I think that follows the Chinese calendar, no???

My mind is racing, my thoughts scattered. We still have so much to go, and we have received the most amazing outpouring of support and help. Eric's work has been nothing short of miracle makers(Jenni, Laura, JoAnn, Susan), and my work the same (Tina and Jen). Friends (especially Carol and MB), both new and old...co-workers, even total strangers have decided to go on this journey with us.

I still pause and have my heart drop every time Eric picks up the phone to tell a friend or loved one, "well, I have oral cancer." I just cannot believe it most of the time. I never imagined us here; especially after all my drama with the pregnancy and Felix just a few short weeks ago.

Now, it is me watching Eric get blood drawn, and get examined (except he doesn't have to put his feet in stirrups multiple times a week!). I'm trying so hard to be present 100% for Eric, but also for Felonious and Mil-oh-sovich.

I'm not going to lie. This sucks. Cancer bites (I was going to say licks...but that's a little "too soon," no?). But the idea of community has never been so beautifully exemplified.

By the way, do they have make a wish for adults? If so, Eric already told me he wants to see the Northern Lights in Canada. Oh, and be able to eat ice cream some day again.

Here's to a big creamy sundae under the beaming Northern Lights someday soon...with the 3 loves of my life.

7 comments:

  1. What amazing news. And, way to keep a positive outlook and sense of humor. Those docs sound amazing - arming you with a plan and such support that you don't even have time to think about "what ifs"... 'cause like you said... why go there?

    We love you so much and I have all the confidence in the world Eric will be a champion ice cream licker in no time.

    And yes, cancer sucks - that's why we kick its ass.

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  2. Thank you for all the details. Eric's email was pure facts. :) I can't wait to hear all about the Northern Lights.

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  3. Team Heintz is ever expanding and you have teammates with all the right connections ready to throw down the gauntlet for you. I can't do much from up here besides send good vibes and spaetzle, but am available for that anytime! Sending positive German thoughts your way...viel Glueck!

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  4. Why must you bring tear to my eyes every time I read your blog...whether it be the cute stories of the boys, receiving the horrible news about Eric, or hearing your positive attitudes explode through the computer-you are amazing....Oh and BTW, when you end up in Cananda celebrating with ice cream, count us in....You're in our thoughts and prayers-go get em...

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  5. Oh wow, what a road you guys are traveling. I'm so sorry to hear about this bump (and hopefully it will be just that - a little bump). Will be thinking of you.

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  6. Ali! My heart and thoughts are with you. xoxoxoxo

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  7. There is a make a wish for adults...the name escapes me now but it will be my mission to get it to you.

    Love your humor...it will get you far my friend.

    Love Sara

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