Thursday, January 31, 2008

this is jaci and this is not a happy blog.
deep breathe. hold. exhale.
erica had a bone marrow biopsy this morning after weeks of low counts at the hospital. since this has occurred twice before during her treatment due to her sensitivity of the chemotherapy, the docs were optimistic and only did this as a precaution. the results came back that the leukemia has returned.
as it turns out--and i don't have much information on this phenomenon just yet--but she relapsed with AML, not ALL as she presented with two years ago.. almost to the day... more to follow when i better understand this. however, the plan is that erica will return to california and live with our mom in burlingame. she has to repeat the induction phase, which means she has to go back into the hospital for at least a month. then we cross our fingers and pray that there is a cord blood match since there was no bone marrow biopsy match. after induction, she needs to have a transplant.
i'll be honest, i don't have much energy to write an animated message with details and explanations, but i will--so keep reading as i promise to keep writing. the important news now is that erica is ok. really. i found out in nyc this morning and caught the first train i could to boston so that i could be with her when she found out... i guess that's one of the perks to being in love with her ex-doc. there were some tears, but i'll tell you, this woman is fucking strong! we're making a practical plan and when that's finalized, i'll be happy to share.
one thing: round one was tough. we were alone in boston and i firmly believe that only by the support of the fletcher family, frequent flights from CA friends, immense love from family, and both being cared for by andres did we make it here to a better place. so now that we are on the brink of round two, please please be double aggressive with showing your love! i wish i did not have to ask anyone for more, because words don't describe the gratitude we feel. but i know this will be harder because she's tired of fighting, so close to the end. only one month shy of completing all her treatment....
ok, i'm signing off tonight. peace.

Tuesday, January 29, 2008


There's nothing like mentioning ya got cancer to kill a conversation.

It would make an interesting PhD dissertation for some social psychologist to analyze anecdotal survey data on what people of different gender, culture and age do when someone mentions casually that they are going through chemotherapy. As I meet fresh batches of friends who just think I've always been super skinny with short thin hair, I find myself unsure of how or if to convey to them that this new and related to a prominent aspect of my life: cancer. I mean, in describing my extracurricular activities, don't you think that spending hours at the hospital each week is at least as relevant to understanding me as the fact that I do yoga for two? And, don't you think that spending a year in bed retching and aching is at least as pertinent as the year I spent teaching kids in Japan in shaping who I am today? I am neither seeking sympathy nor would I dream of causing discomfort, but I am an open person who would like to just be who I am without freaking people out.

When I was bald and in a wheelchair, this was easier. The light bulb over people's heads would accompany a facial expression that said "aah, so that's what's wrong with her". Now, most people are just at an uneasy loss as to what to say if I accidentally/casually/purposely mention my treatment experience. Some patients seek to hide their illnesses; I, on the other hand, am so grateful when folks are brave enough to express their curiosity and mature enough to realize that people are not all that they appear to be.

I'm not sure if I'm making much sense in this blog post. I guess what I'm noticing at this stage of this experience is some difficulty in assessing when and how it is appropriate for me to mention my cancer/chemo. When we went around in a class last week each stating something unique and interesting about ourselves that one couldn't read on our resumes, I battled internally over why it seemed expressly taboo for me to joke that I haven't felt my toes since January 2006 (neuropathy). I find it pretty funny. A hunch told me my class wouldn't.

I recently consulted Fletcher's office of career services about when I'm queried in an interview about challenges I've overcome and whether it was appropriate for me to use the fact that I basically earned a master's degree while going through chemo. I'm pretty damn proud of that and think it demonstrates some relevant qualities about me. After giving it some thought, they said to avoid mentioning it. "I would just hate to see their prejudices or fears get in the way of you being hired", they said. And, they're right- if I didn't get the job, I'd never know if it was because they thought I'd be a sickly and therefore unreliable employee. [the only person worse than a recently married woman of child-bearing age to hire is probably a damn cancer patient. sigh.]

One last example of biting my tongue involved being in a friendly group conversation where a woman was telling a hilarious story about how she didn't read the instructions on a bag of "lavender-scented" mothballs, inadvertently exposing herself to dangerous amounts of para-dichloro-benzene. It was funny and in adding to the natural flow of the stories and conversation, I wanted to say- "yeah, that shit is nasty! the gasoline sumps that oil companies buried in my neighborhood growing up actually emitted benzene- which is probably why I got leukemia..." Um, no. Obviously I couldn't say that. Well, I could, but no one wanted to hear that. I can only imagine how the conversation would have ground to a halt.

I know that one of the reasons why I find most of the cancer experience easy to discuss is that I have great hope for remaining in remission. So, really, all of this is not a complaint, but observation.
Still, how do I remain true to myself while still being conscientious of people's comfort zones?