hey my dears. i haven't written in this thing for months, so i figured now is a good time for an update. there's a lot here but i figure it's better to write out the yucky medical details so i don't do the broken-record w/ ya'll.

January was crappy. I was reacting badly to the chemo, the side-effects were compounding, i reached my lowest weight (105,not good for someone my height), looked like an anemic spider-monkey, and was so depressed by the realization that a) my cancer is more rare and complicated than they'd initially thought and b) there was no guaranteed end in sight. I wondered if i'd ended up in hell and someone forgot to inform me.

my mother moved out here temporarily to help me out. it was ROUGH. we haven't shared a home in 13 years and it's still the old cats and dogs routine, although i have endless love and respect for her. she was a huge help in keeping the place clean, taking care of my needs and being a tireless advocate for me when i (finally) got too exhausted and sick to call out the doctors/insurance companies/govt agencies on my own.


by my last chemo treatment (number 7!) which ended late february, we realized that my tumor markers (in my blood, the only things that determine if i have cancer, since my ctscans are clean and i am tumor-free) were not going down.

i mentioned to many of you that the only real "cure" at this point is to have a double stem-cell transplant. this means that they would take out my stem cells temporarily, give me an incredbily brutal, high dose of week-long chemo, than put my stems back in my blood. than i'd wait in the hospital until there is proof that my white blood count/immune system, has returned. this is a guaranteed straight month in the hospital. than, i'd have 1-2 months to rest at home, than return to do it all over again (hence the "double" transplant). the anticipated total time, from start of treatment to point of feeling really healthy again, is eight months. f'ing brutal, considering i've already gone thru 7 months of this shit.
Also, stem cell transplants are NOT bone marrow transplants. Different thing, trust me.

Now, the surprising catch is that for the past month or so, my tumor markers, tho higher than normal, are pretty stable. meaning, they are not shooting up to a range that makes my doctor worry. so she doesn't think i need the transplant at this point. she pointedly told me "start making plans and getting back to your life". wow.

second surprising thing i've learned is that tumor markers counts (in my case, the AFP/alpha-feta proteins) CHANGE depending on where you get tested. my doctor sent my blood to another lab, and they reported my markers as normal! i am surprised that something like a tumor marker is marked on a curve! i mean, this is the thing that influences whether or not i get chemo or a transplant.

so at this point i am basking in some cautious joy. some guarded ecstatic-ness. my mom returned east a few weeks ago. i've had 7 weeks away from the chemo, and i feel amazing. even after 5 straight months of week-long chemo treatments (7 treatments! i can't remind ya'll enough, b/c it totally sucked), i am stronger, my weight is close to normal, my skin-color is healthy and normal, and my HAIR IS GROWING BACK. that part will take awhile, and i plan to rock my wig for as long as possible, but it's such a cool feeling to see hair again. my period, unfortunately, probably won't return for a long time, and i am still dealing w/ the temporary nerve damage. it takes a long time to type, and writing is painful, but i force myself to do a little every day. i have a looong way to go in terms of getting stronger, but i am doing my best. i still have the pic-line in my arm, which is frustrating, but i think i should keep it in for awhile longer, until it's clear that i really won't need a transplant.

in regards to you all: i've said it many times but it will never be enough. i am so grateful for everything you do and have done. you stuck around and showered me with love. you took me to the doctor, slept over w/ me all the time, advocated for me at school and many other places, made me food, brought me food, gave me massages or acupunctures, distracted me from the pain and fear, helped to pay my rent and scary bills, gave me magic charms and gifts so i'd be protected, made me utterly crucial mixes and cards, physically held me when i couldn't stop crying, or psychically held me through the phone and email. you all are all over the world and it never mattered how far apart we are, you have my back. even if i die tomorrow i will have the true joy of knowing that i did something right b/c you are my friend.

if anything changes regarding my health, i will let you know. but for now i want to get strong and start visiting folks. i am hoping to make a trip to L.A. in the next few weeks (sorry this past weekend fell thru!), see my brother in Portland, than head to the east coast sometime in may or june. i'd like to try and take one class this summer. we'll see. thanks for reading thru all this, and as always, i love you.