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Monday, May 3, 2010

Cancer observations

So I've got a 10am appointment for my MUGA today (see this post if you want to know what a MUGA is and why I have to get one done) and then tomorrow a.m. I'm headed back to Ocracoke (where I won't have cell phone coverage, so email will be the only way to reach me or we can skype/gmail chat)--and I won't be back home until late May, the week before the wedding. No firm decision can be made about surgery and treatment until after I get the genetic testing results, which probably won't happen until May 7, so if you want an update on the treatment and surgery plan, you should check back on Monday, May 10, because hopefully I'll have talked with my team of cancer docs and we will have come up with a firm resolution. Of course it might not be until after Wednesday, May 12, since the cancer conference meets every Wed. morning to discuss various cases and they may want to discuss my case then before we firm up any dates for surgery and chemo.

Anyway, this post is not about the nuts and bolts stuff. Like the one I wrote previously, this one is more about how I'm feeling and coping with all of this information. And I'm really and truly overwhelmed. I need to make a surgical decision in the next week that will impact the treatment and rehabilitation options I will be facing in the next year. It's heavy stuff. I've had two minor break downs so far and am hoping, once decisions are made, to be at the beach and do some real soul searching and healing and coming to grips with all of this as best I can.

But even amidst all of the confusing and anxiety producing and hard news of my initial diagnosis and subsequent round of meetings with the team of cancer docs at the Lineberger Center, I've been overwhelmed in a completely different way by the amount of love, support, well wishes, expressions of kindness and sincere sympathy and empathy that have made me feel like I'm not alone in all of this--that I can get through this in one piece.

And there have been many observations I've made about when you get a breast cancer diagnosis. For example, when you get diagnosed with breast cancer:

*People from near and far email you immediately with messages of support and expressions of shock and offers of help--and in the initial days of my diagnosis this was critical for me to feel like I could get through all of the difficult days I knew would follow.

*Matthew (my partner in all senses of the word) shares in my pain but more importantly he listens to me and holds me when I cry and laughs at my macabre jokes, even though they make him uncomfortable. He also lets me pick out the Ben and Jerry ice cream flavors (I *heart* Pistachio, Pistachio) and lets me pick out the movie rental (500 Days of Summer) even though he's not really a romantic comedy guy and we usually allow veto power. But veto power is suspended for now.

*People send flowers and bring flowers and I love flowers! The Department of English and Comparative Literature (spurred I'm sure by Beverly) sent a lovely bouquet the day after I was diagnosed. And friends and family near and far have sent flowers or dropped off flowers. And every time I see a bouquet I smile and just feel happy!

*People bring other gifts and send cards. A former student dropped off a helium balloon and a tomato plant. Another friend dropped of chocolate. And cards have been arriving by post and dropped to my department mailbox, by people I know intimately and people I know as colleagues or even just acquaintances. And every time I get a gift or card I just get a huge warm fuzzy.

*People drop off food. Complete meals in many cases. Ashley left a 3 course meal the day I came home from the first marathon cancer meeting. My Aunt Joyce mailed 7 packages of frozen Jamaican beef patties on dry ice; my friend and ex-college roommate Sheri sent half a dozen frozen gourmet meals, and Robin Smith (a grad student who shares my office) dropped off homemade chili and cornbread. I love to eat and when people cook for me or leave food gifts it makes me feel cared for in one of the deepest ways possible.

*People offer help. Specifically after my last post, I received numerous email and phone messages offering to walk Bruno, be my chemo chauffer, drop off food, take Matthew out for a beer, and generally serve as a sounding post for either of us whenever we need it. Jordynn Jack will be organizing a google doc spreadsheeet for both dog walkers and Chemo drivers, and Laura Halperin will organize a google doc (with Jordynn's help) for food drop-off when we know the treatment schedule. So be on the lookout for a future post and/or you can follow-up with Jordynn or Laura and sign yourself up for a slot (which is the beauty of google docs--you can do it yourself).

*Family and friends from far away have called or sent email messages or in the case of my best friend Beth, flown in from CA for my surgery. And more will be coming to our wedding, to celebrate with us--which means the world to us because there is SO MUCH going on in the month of May--decisions regarding cancer but also fun things like picking out cake flavors (we've decided to go the untraditional route, which I'm sure won't surprise anyone--so we're doing 3 half sheets of chocolate cake with chocolate ganache, yellow cake with ganache filling and almond-mocha icing, and lemon cake with lemon curd filling and lemon buttercream icing from Weaver Street market). Every voice mail messages or email check-in, long or short, has helped to sustain my energy and focus and let me see that I've got this amazing community of support near and far. And that is what is going to keep me alive at the end of the day. I can't imagine how anyone could do this alone.

So thank you for reading this blog. I know that there are people reading this who don't even know me--who have never even met me--and knowing you are interested is just humbling.

One nice story: I went with Matthew to finally order the pair of eyeglasses I had been wanting for a long time. I figure, why wait! So we went to Carrboro Family Vision (click here for their site) to go try on glasses and order the lenses (it's the Silhouette glasses I've been eyeballing, so to speak--the rimless ones that have interchangeable parts (here's the pair I'm getting). Anyway, our friend and kick-ass optometrist, Jason Chow, is one of the eye docs there. He had also, unbeknownst to us, circulated our blog link to the staff. So when we were there a while, I asked the receptionist to leave him a message that we were there picking out glasses and if he had a moment to say "hi" between appointments, that'd be great. Well, what followed once I mentioned my name was that every single staff person we spoke to told us that they had been reading this blog and really wanted me to know that they were thinking of me and what I was going through with the cancer. And that was really humbling and so nice! I mean, the fact that these people who don't know me but who read the blog because Jason gave them the link wanted to reach out to me and let me know they were thinking of me.

Truly--all the love and support--it's what I'm going to need to make it through what I can only imagine will be a hellish 9 months of treatment and surgery and rehabilitation. So thank you now and in advance. I only hope one day I can repay everyone for their generosity and kindness.

[This is a photo taken of me and Matthew at a wedding shower that was the same night as the surgery--I know you can't see how dilated my pupils were, but I was pain-free and flying high as a kite!]



P.S. A few people have written to say that they have wanted to comment but weren't able to because you have to have a registered account. I just re-did the settings to allow anyone to comment, including anonymous commenters. I'm generally wary of doing this since in my other blog, when you allow anonymous comments to come in, unfilitered and unmoderated, lots of crazy stuff can happen. But I'm going to assume that this won't happen here (or hope it won't at any rate), so please do leave a comment if you'd like to!

3 comments:

  1. I think that the suspended veto power is incredibly cute! So glad you're getting snowed under with support -- to which I will add when I get into town.

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  2. Jennifer,

    It's been nearly 20 years. Greg Massa gave me your blog info. I'm so deeply sorry that you are facing this.

    Your saga sounds so much like the one my mom is dealing with right now - of course, she is much older. I wish we could talk and compare notes. She opted for a double mastectomy and it is next week. if the sentinel node biopsy is clear, she'll have reconstruction. if not....we'll see.

    I hope your time at the beach is restful. I hope your wedding is joyful. I pray your battle is brief and successful.

    much love - from the shores of UCSB...Pooneh

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  3. OK -- no pink ribbons -- but what about a pink floating beer pong table -- are you f***ing kidding me!!!
    http://bitchmagazine.org/post/mad-world-pinkwashing

    A big hug -
    Donna

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