Thursday, November 4, 2010

Tissue Is The Issue

Pre-hair halo, in line for desserts
Tonight, my mom came with me to a Forum held at Penn's Abramson Cancer Center and sponsored by LLS (Lymphoma and Leukemia Society) to learn more about different types of lymphomas, the latest treatments available and of course, to shop at their cancery boutique.

While I had my chemotherapy at Pennsylvania Hospital's Joan Karnell Cancer Center and it's part of Penn Medicine, I had never ventured up to Penn (my alma mater) to see what it had to offer.  This was my very first visit to the place. 

It was roomy and seemed brand new - lots of big windows everywhere and you could see down below to the ground level from the second floor.  Kind of like a giant great room.  Up on the second floor, tables were set up with small eats (spanikopita, some risotto and shitake cakes, a bread with a slice of roasted meat and jelly), hot and cold beverages, and desserts for the noshing while the registrants were encouraged to "Ask the Experts" seated around the big room.  There were experts on coping with emotion (ha h-ha ha ha), survivorship, complementary medicine (I forgot to sign up for a free massage - doh!), and other topics, but no one on fertility (as advertised in the brochure). 
Big plate of small eats

After grazing (mini-pumpkin tarts were the highlight for me) and browsing some of the experts' literature, we decided to meander over to the Center's wig/hat/scarf/bra extraordinaire boutique (Faith and Hope).  There, I selected a car magnet (purple! and labeled, "cancer sucks" since I think it would be limiting to just pick lime green for lymphoma - all cancer sucks), a lime green wristband (gotta show some support, right?), a super cute tweed-ish hat and some bangs. 

You read correctly.  I bought me some bangs.  They fit around your head like a halo (this is how the woman described them) and then you can fix your scarf or hat right on top so it appears that your hair is peeking out from underneath.  Who would know that you have a very large bald spot hiding under the scarf??  It was surprisingly cute and I wore it right out of the shop (Like when you were six years old and you went shoe shopping?  Way too excited to put those kicks back in the box!  You had to wear them home!).  The sales lady kindly cut the tag off for me while I signed the receipt.

We listened to some opening remarks, clapped for some honorees, hugged my college roommate's parents (who had not been previously informed of my situation...) and then found our way to the conference room where we would hear a presentation on the topic of Large B and T Cell, Mantle Cell and Other Agressive Lymphomas (they really getcha right from the start, right?).

See the bangs?  Cute, huh?
Man, did this lady ever know her stuff.  She had this lovely power point to blow through and she kept spouting words like proliferate and cyclic and number/letter combinations (3qP) and coordinates (11,14)???  There is a very good reason I did not go to medical school.  I just don't have the memory for this nonsensical information (and especially now that I have a brain turned to mush from chemo).  I asked questions like What is a germinal center? (I cannot replicate her answer here - it seems it is a part of a cell from which cancerous cells can form) and Are all Large Cell Lymphomas aggressive? (answer: yes).  I felt like I was back in college, giggling at how ridiculous this specific information seemed to me (and also how essential that someone else understand it all).  Blood Cancers For Dummies, anyone?

While our lecturer/doctor was extremely knowledgeable, I needed her to present the 3rd Grade version of Diffuse Primary Mediastinal Large B-Cell Non-Hodgkin Lymphoma, Stage II, Intermediate (that would be my full diagnosis).  And how it came to be here, in my body, having started from a single pisspoor reject cell that mutated and then proliferated (see?  I learned what it meant).

Damn, there's a whole lot of science involved in cancer, and still, they don't have the answers.  How can we know (not me, we, but the collective we) so much and it's not enough to prevent it or cure it? 

I learned about autologous stem cell transplants being a possibility in case of relapse.  There is also the  potential for more - MORE!! - chemo or even another biopsy in the future, since no doctor will treat you (again) just on the basis of a PET scan (hence, Tissue is the Issue).  And while that's all so daunting, I realize it's so much better than the alternative:  to have a cancer (such as Mantle Cell, or the most aggressive, Burkitt's Lymphoma) that has zero cure rates and high likelihood of recurrence, if you can get to remission.  While I don't love the idea of more chemo or even of a transplant, the numbers we left with ringing in our ears were that for my type of cancer and treatment, 75-80% of patients never see it again.  Rock on!  Those are high numbers.

Life's still not exactly perfect.  Having radiation puts me at a higher risk of a second malignancy later on down the road (even decades from now).  Any healthy tissue that is exposed to high doses of radiation is at risk (neck, thyroid, breast, lung...).  So there's always that to worry about, even if I can recognize that my chances are high of coming away from this lymphoma for good.  Never fear, I will not run out of possibilities to worry about.

The bright side of this evening's ventures is that I left thinking (and saying), "It could be worse."  And I hadn't felt that way in a while.  Of course, I'm off to collect my chemical intake for tonight, thus helping myself to a solid night's sleep, but me and my 80% (stick to the high side) chance are cozying up with the facts.  Tonight, they appear to be in my favor.



  1. I love every word of this post. Once again, found myself sitting right beside you and listening to the Power Point, taking in the big picture and leaving those pesky details to the experts. What I love, absolutely love most, is the 75-to-80% never-see-it-again figure!! Yes!!! A zillion high fives! A number to visualize on throughout radiation-we'll be visualizing with you. And by the way, I had to smile at the vision of your halo of bangs, peeking out from under a dapper tweet hat. XOXO

  2. You always have the best food descriptions!! I like your look with bangs and without bangs equally. :)

    Sending you lots of good energy for that grapefruit-->lemon f-er to be zapped into nothingness. Can't wait for you to be out of Cancer Land ... with zero additional chemo or any other crap EVER.

    Do you have some pictures of a trick-or-treating Judah to share???? :)

  3. Those bangs look adorable! Based on your food descriptions I take it that you are able to enjoy eating once again? I will have to keep this in mind as I have just discovered that the oven portion of my dorm's stove actually works (despite what we had been told)! As always I miss you all so much!

  4. Mia, I love the bangs! I hope you are able to find the fertility expert you seek. I'll be rooting for you!

    Mia J.

  5. The bangs...and the smile...gawwgess!
    Love, Uncle