it's back.

friday was a really crappy day.

well, like all days, it had both good and bad characteristics, but it wouldn't be overly dramatic for me to just say it fucking sucked.

clinically, the doctor's appointment could have totally been worse. there's more regrowth than dr. butowski was expecting, which was certainly an unpleasant surprise. it showed up in a newer area, an area that didn't show signs of growth last month. he feels like it's growing along her vascular pathways. when it comes to all cancer, more is bad, and given how mysterious the brain is, it is especially concerning to me whenever there's more growth. i keep wondering, which part of her will it take out?

he gave us a few options for treatment. the point of this appointment was to see if mom's chemo meds were working for her, and the new tumors give us a resounding 'no.' so, now we need new drugs. here are the options, in order of desirablity:
1) a drug combination that is very popular because it's so effective. regular chemo in this kind of cancer is about 30% effective, which is a shitty figure. this other combination is 60-70% effective. we like those numbers more. this particular combination targets the blood flow to the tumor, which slows or stops its growth. that's especially good since he feels like it's following those pathways anyway. oh, but here are the downsides:
a) the important drug in the cocktail is approved for use in colon cancer, no brain tumors. they use it all the time for other types of cancer (that's really common with all types of cancer - the trading around of drugs) but it presents a problem when it comes to insurance.
b) it costs $20,000 an infusion. and she gets infusions every other week. yowza. because it is such a literally unbelievably expensive drug, insurance companies would rather not cover it.
c) doctors often don't like to treat patients with it, because insurance companies don't want to cover it. they don't get reimbursed the way they want to for it, so they just don't do it. so findin a doctor in mom's area, who is willing to do this thing, is not necessarily impossible, and maybe totally easy, but also maybe impossible.
d) since mom has medi-cal, and since medi-cal is kinda bootsy as far as insurance goes, they will really not want to cover this. between it being CRAZY expensive and it not being technically approved for use for her cancer (so they can say it's too experimental to cover), they have ample reason and opportunity to nix this option.
e) oh, and because it works on the blood flow, choking it off from the tumor, it naturally chokes blood off to other areas, too, resulting in a really serious risk for high blood pressure, kidney damage (because kidneys are all blood) and....wait for it....spontaneous bleeding into the tumor. again, yowza. because of these side effects, she'd need weekly blood pressure and blood tests, and most people have to get off this cocktail within a few months.
there is a chemo doctor in mom's area who might be willing to do it, though. if we have a doctor who's willing to treat her with that combo, we'd be in business. he might not want to, but i'll call him and ask tomorrow. it would be really amazing if mom could get her treatment up near her house, so she wasn't have to come down here all the time.

2) because the chances of 1 working out are so slim, 2 is the most likely candidate. it's a drug trial, trying out a different, newer, better(?) version of the previous blood-flow-stopping drug. same side effects, which are scary. the trial is only open to people dealing with their first recurrence (like mom.) problems:
a) because it's a trial, she'd have to get her infusions at ucsf, every other week.
b) those side effects are no joke.
c) because it's a trial, we really have no idea if it'll work. that's quite a roll of the dice, but who cares, right?

3) there's another drug trial, which does something totally different. again, might not work. it's a pill, which is rad. side effects are more chemo-typical - fatigue, nausea - but with the added treat of full body acne. um...what? groders. this drug trial is good because she can do it anytime, so if she does 2, and it doesn't work, she can try this one. with the full body acne. um...what?

so, i have some serious calls to make tomorrow, and then i have to call the nurses to tell them what we want to do, so they can get the ball rolling. obviously time is of the essence.

but, believe it or not, that wasn't what made the day suck.

i have been having a really difficult time being with my mom.

i know i've talking about how much she's changed, and the changes make spending time with her difficult for me. she's just not there.

my biggest fear, as i was driving back to the bay area from la, the day we took her to the hospital the first time, was that she was going to die before i could say goodbye. once i got there, and she was SO out of it, my biggest fear was having lost her, the mom that i knew, and never getting her back. the morning of her surgery, the steroids had reduced the swelling so much that she was really alot like herself, and it was such a huge relief. even post-surgery, as she came off her morphine, she was very much like herself. but i feel like that's less and less the case now. even talking to her on the phone, her speech is always a little slurry. she's really forgetful. i am assuming this was from the damage done to her brain during radiation, because it wasn't from the surgery.

i kind of realized on friday that my mom, the way i know her to be, might be gone forever now.

the doctors have said that she should regain brain functions over time, and that the fogginess will go away, but how much time do we have?

also, bottom line, i just miss my mom.

allen came to the appointments with us. he doesn't always come. mom said she thought he felt guilty for missing the last one, which may be true, but i think he worries about her driving all that way by herself, which i fully relate to. historically, allen and i have had our issues. i don't enjoy spending time with him. but he and i are the first line of defense here, and there was something really tender about our agreement that mom wouldn't be driving between redwood valley and marin herself. we don't connect very often, but we did on this.

neither of them go directions to the appointments. we got lost in china basin, following a 15 year old map of san francisco in an area that has been totally transformed by development within the last 10yrs. mom left the information about where her first appointment was in the car. she had to take an ativan (is that right? ativan? adavan? whatever.) because she gets anxious in her mris, and it made her, if possible, even more out of it. between allen and i, we figured out how to get from china basin to ucsf, but it wasn't fast or pretty. we took a street that i think might contain the most stop signs per mile of any street in sf. it was especially perplexing because we were only one street over from california, which moves really fast. more on allen's driving later. again, mom didn't know where the second appt was either. she got it mixed up with the room number of her friend, who was in the hospital for stomach surgery. 

i can't trust her to handle anything, at this point. she just can't do it. she's just not together enough. i asked her if she'd be willing to let me be the contact person for all doctors' appointments because the whole 'we don't know where we're going and we don't know how to get there or who to ask for' thing is making me crazy. she laughed about it at least, and said that that was fine. almost the only portion of her that remains untouched is her sense of humor, which, if you know her at all, is pretty much the most important part. actually, i had been judging her total mental capacity based almost solely on her sense of humor, so it's taken me a while to fully see how much the rest of it has deteriorated.

i find myself not wanting to spend time with her. between allen's terrifying driving all day and mom's sudden transformation into a 100 year old, i couldn't wait to get away from them. and i never feel that way about my mom. allen, sure, but never my mom. i just don't know this confused lady very well yet, and i don't like her yet.

i am going to have to take a bigger hand in things. i think that that's my new job. i'll start spending longer chunks of time up in RV again, and help out more with things. partly because she's dying slowly (very slowly, but dying nonetheless) and partly because i don't trust her to ask for help when she needs it. 

she's eating like crap. we went to lunch at max's and she ordered a HUGE french onion soup and a half pound of fried calamari. the combination of those two elements makes me feel queasy just thinking about it. she's always been a perplexing food combiner, but this hits an already sore spot. in the beginning of all this, we were told about a doctor in colorado who is considered the foremost expert on the link between controlling cancer growth and nutrition. she is supposed to have a lover who has the same kind of cancer mom has, and to have controlled the tumor's growth with nutrition for 10 years. given that only 3% of people with this specific type of tumor live to see 2 yrs after diagnosis, that's fucking amazing. her rates are reasonable, and she does phone consultations, and designs a personalized diet for your type of cancer and your lifestyle. we got a packet of information on her, and i spent a long time reading the things she'd written on her website. i was really excited about it, and emailed it all to mom. and this was the first of many times where she just wasn't that interested. i mean, in theory, if i set it all up for her and made it happen, she'd go along with it, but she wasn't interested enough to do it herself. this happened with the chinese herbalist who is really well respected in the marin cancer community. sure, if someone else handles it for her. 

this nutrition thing is not complicated, though, so she could easily do many of the things herself, having just read the articles. it's pretty obvious, too. basically, tumors thrive on inflammation and sugar. things that cause inflammation are animal fats, most common vegetable fats, sugar, spicy foods. so, if you avoid the bad fats, eat more good fats (the omega 3s that we already know are good anyway), cut out sugar, and keep the spices to a minimum, which are pretty obvious dietary restrictions anyway, you can help slow the growth of your tumor. this doctor lady isn't a quack, she's recognized as a normal, very intelligent doctor, and her ideas aren't controversial. and mom can't be fucking bothered to stop eating gross food. if she said, 'dude, i'm dying. let me eat some damned cheese' then i'd be able to get it. okay, i don't agree with it, but she's made her choice, so let her do it. but again, like everything else with her cancer, there is no sign of conscious decision-making. she's just doing stuff. if i ask her about it, she'll meekly admit that i am right, but keep doing whatever she wants to. oh, except she tried to half-heartedly convince me the fast food thing wasn't a problem because they aren't using trans fats anymore, which isn't the issue i'm talking about anyway. i mean, she shouldn't eat that way because she's overweight and feels like shit now because of it, also, but i'm talking about inflammation, which hasn't got anything to do with trans fats.

lu and her sister were shopping at the village, across the freeway from max's, and they came to the restaurant (because mom, already the world's slowest eater, has slowed even further) to give mom a hug and a kiss and to save me. i have never needed saving from my mom ever, and i almost cried with relief to get away from mom and allen on friday. i drank a lot with them and tab that night, trying to wash away the despair of the day. i had a great time, but, as with all despair, it was there the next morning.

a separate weird thing happened at the appointment, though. mom asked if this was going to kill her, her cancer. so, this question is weird, because everything i've read and heard says that, barring a bona fide miracle, there is no questions that this kind of cancer will kill her. she knows this. her doctors have not tried to make it seem like she'll live to be 100 and that this is just a little bump in the road. she feels like it's a bump in the road, but that's despite any evidence to corroborate. so, it's scary to me that she asked that. but her doctor was kinda maybe about it. he said that if the success rates were still the way they used to be, with only 30% of patients showing any response to treatment, he'd never have gotten into the field. (he's really, really young.) but, he said, the new drugs that we're talking about using - options 1-3 - have really increased the lifespan of people with this cancer. but i think that what he wasn't saying was, 'yes, you're going to die from this, if you're not hit by a car first, but you'll have longer to live before that than you would have 5 years ago.' maybe it's not in his best interests to tell his patients that they're going to die soon, because they'll just give up and stop any treatment at all, but i didn't fully appreciate his non-answer, which was just a fancy way of saying, 'probably.' well, i don't think mom felt like it was 'probably,' i think she heard 'maybe.' 

just to be clear, i am not trying to rob my mom of her hope. i understand that hope, of some kind, is supposed to be helpful in this kind of thing. i am scared about the line between keeping the hope alive and burying your head in the sand, or disconnecting from reality. she is so not there, and so not seeming to prepare for her death, or thinking about what that means, or how she wants to spend the rest of her life, that it's as if she hasn't accepted it. and, this doctor's good intentioned fancy answer just seems like it'll reinforce that behavior. for a while, it seemed like she was looking at the tough stuff. she initiated conversations with allen about things he might like to do with her before she dies. she had a few things she really wanted to do herself, and she did some research about them. and then the teensy ember of motivation just seemed to wink out. 

i had a long talk with my dad the day after her appointment. it ended in me crying at book passage, on my cellphone, sniffling loudly, much to the consternation of several customers and employees. i guess i was bringing everyone down, hunkered in the aisle between joyce carol oates and cormac mccarthy. sorry my sadness of my mom's brain tumor is bumming you guys out, book passage. i'll try to become overwhelmed by the grief of my loss in a less obvious way. geez. 

anyway, the gist of the conversation was that mom has probably begun the slow descent into death, and that i should start assuming that anything that we do needs to be orchestrated by me. we had talked about going to tahiti, and, if that happens, i'll probably need to treat it like traveling with a child. that's a tough change to accept. at that point, i felt so exhausted from the day before that the possibility of traveling with her seemed out of the question, but i am getting closer to it.

i need to keep working on acceptance. accepting that this is who i have as my mom for now. maybe it'll get better, maybe it'll get worse, but this is who's here right now, and she's my mom - the only mom i'll ever have - and she is probably dying. going from my mom being my best friend to my mom being a stranger whose company i don't enjoy is not a pleasant transition. and ultimately, since the suffering comes from the gulf between reality and my expectations, and since reality doesn't appear to be especially impressed with my expectations, i would be better served focusing my energy on letting go of those expectations and finding acceptance of reality.

but i am not there yet. i still hate it.

a few happier, unrelated notes:
1) this is very, very cute. try to make it through the whole thing, because the ending is really cute, too.

2) shannon and i made an offer on another great house, which might have been a huge mistake, since our lives are kinda falling apart and we've got more than enough to be going on with. but still.

3) i have started a new blog, on another website. i think i'd like to route everyone over there, eventually. it'll be nice for people who aren't on myspace, so they can comment. not like i get a whole lot of comments anyway, but still. this is it.