Braaaaaiiiiiiins.....

This is my mother's brain, or at least it was last fall. See that weird little truffle-shaped glob in the lower right corner-ish part of her brain? That is a giant brain tumor. But they took it out.

See this? This is my mother's current brain, truffle-free, but with a white blur. See the blur up there slightly left of center? That's bad, and it's too deep to operate on. But the good news is that it was there last fall, just tinier, and they irradiated it last fall. So they're thinking that the chemo that fixed the rest of her body is still effective and she's probably clear from the neck down, and they base this on the fact that this little blur was there before and there are no new blurs that weren't there before, so obviously the cancer isn't spreading. 
So anyway, on Monday my brother will drive her to Iowa City so they can do a new MRI and a CT scan, and then Tuesday I will drive her out for the one day radiation where they will zap her deep in her frontal lobe with what I secretly envision is a cross between a giant laser pointer and the laser Val Kilmer spent the entire Real Genius movie building.

Iowa City

I am awake and showered before 7:00 am so that I can accompany my mother and brother to Iowa City to see what the doctors want to do about Mom's latest MRI, which shows a new/returning tumor in her brain. Remission is over and this horrid dance is starting all over again. There was a time when I thought I might attend the University of Iowa and Iowa City represented hope and independence and adulthood to me, but now it's just surgery and radiation and dumbed down medical jargon and the gag-inducing scent of iodine. When all of this is over, however it is over, I hope to never set foot in that town again.

My mother is now art.

This is not my mother. This is a random photo from a google image search. But this is how they do whole brain radiation, which my mother had. They mold a plastic mesh mash to your face and use it to bold you to a table to hold you still, and then zap you with radiation from all sorts of different angles. The thinking, as I understand it, is that by coming at the tumors from all sides they will hit each known tumor with a lot of radiation without having to send such a powerful beam through any healthy brain tissue, but they'll get the whole brain with enough radiation to take care of any loose cancer cells that may be loitering in there.
My mother gave me her mask.  I asked her if they'd let her keep it and mentioned that it'd be a slightly more personal momento when all this is over than a generic colored ribbon car magnet, so she asked for it and gave it to me. But what do you do with an irradiated mask of your mother's face?
I screwed it into the wall in my hallway.  We don't have any "art" on our walls.  We have family photos (a lot of family photos), and one large piece of white cardboard Tommy colored a rainbow onto, but no actual official art.  And now I have my mother's three dimensional plastic mesh head silhouette sticking out of the wall.  It's kinda cool, but it's also kind of macabre.  Because even if she lives to 100 and dies in a home full of other old ladies, I will still be able to squint at this thing and see my mother's face, at least in profile.  Someday it will be all I have, the only way to see her in 3D. This thing they used to bolt her head down with and shoot laser beams through.  Creepy, yet too personal to throw away.

A good Mom update

My mom's post-chemo pet scan results came back and she has no visible cancer in her at all. This is small-cell cancer so she has to amass a pretty big grouping of cells for it to even show up, so the odds are very much in favor of her having cancer still inside her.  But she has less than she did when this whole mess started, so that's good. The bad, though, is that this is a very very fast-spreading cancer. And if the chemo every 3 weeks has been keeping it in check, it could just go nuts and run rampant now that chemo's over. I need to find out when her next scan is, or blood test, or how they're going to monitor this to know when/if to do more chemo.  I'm hesitantly optimistic, but still scared shitless.  This isn't like breast cancer, where you can beat it. This will kill her (unless she gets hit by a bus first or something); it is terminal and the very fact that it spread to her brain makes it stage 4- the worst.  But for right now, she's healthier than she was 6 months ago and that is great.

A cancer update, for those who were sick of phonetically written Tommy updates

So my mom has finished her first round of chemo and tomorrow we get to make the drive back to Iowa City (hopefully for the last time) to get her head scanned and meet with the brain surgeon to make sure the 2 weeks of radiation she had actually did shrink her remaining almost-too-small-to-worry-about-but-hey-they're-brain-tumors-so-we-worry-anyway-now-that-the-big-one-is-out tumors. Because no matter how well the chemo goes, chemo won't affect the brain and brain tumors are serious business.

Danny is either A) sick, or B) teething and having a growth spurt. Because he is cranky as all Hell and sleeps a lot.  The problem with this is that they won't administer chemo to anyone with an active infection so if my mom gets sick even a little, the chemo gets postponed and the tumors all grow and spread and I really don't want my petri dish of a kid to be the reason my mom got lung cancer in her spleen.  Also, so we can make the trip tomorrow and sit in the waiting rooms and do all the stuff required to talk to and understand a neurosurgeon (Is it bad taste to say the guy is hot, too? Because dude is smoking!) I am dumping my kids with my "I think I'm getting sinusy" friend for the day.  A week before Thanksgiving.  So tomorrow I am going to wake up early, get dressed, wake up the boys, dress them, boot Ryan off to school, go pick up my mom, go ditch the boys at my friend's house when she gets home from driving her kids to school, and then call my doctor's office and make appointments to hopefully get them enough antibiotics to make them uncontagious by Thanksgiving so my mom can eat turkey at my house.  Then I will drive for an hour and a half to Iowa City to the hospital to talk to Dr McNeuroSteamy and figure out if my mom's problems are just lymphnodey or if they're brainy too.
And I will try to do it all on half a Xanax because a whole one makes me too drowsy to drive.

well, crap

http://www.cancer.gov/cancertopics/pdq/treatment/small-cell-lung/healthprofessional/page1

Are you FUCKING serious?

A woman with a tumor in her brain the size of a chicken egg walks, with the help of both of her children, into a hospital for seven hours of neurosurgery. A nurse asks, "So what are we doing today?" and the patient answers, "They're just going to pop a little thing out of the back right here," and points at her head.

It is so hard to sift through the layers of denial and euphemism and sugar-coating to get a straight answer from my mother.  She drove herself to the hospital for a week of treatments- and we let her- because the radiation guy told her they would make her tired but she could continue to drive as long as she took a nap first.  Now she needs a ride home because she is unsteady and can't drive, but the radiation guy warned her that that would probably happen so she's not worried.

And you can't scream, "OH MY GOD WHAT THE FUCK!?" at someone with cancer because they are sick and do not need the added stress.

And on a completely unrelated note, Congrats to my brother and his wife on the birth of their daughter.

I see your Stephen Hawking, and raise you a Pamela Anderson!

I hate pink ribbons. Everything has a pink version, or sends proceeds to breast cancer research, but nothing has gray ribbons, or brain research. So I kinda resent all the pink bullshit. Brain cancer is the ugly younger sister of breast cancer. Tits outvalue brains, but we all knew that, didn't we.

Or it could all just be random and without meaning at all.

If God really did never give us any more than we could handle, wouldn't we all be immortal?  I mean, He gives us cancer, and sometimes it kills us so obviously we can't all handle that.  And He gives us depression, which some of us can't handle. In fact, if I really did believe that some dude was deliberately handing out every random occurrence in my life, I think I'd be pretty pissed off that He handpicked the "brain cancer in her 60s" card for my mom.  Because really, what a prick!

Limitless information, at my unwilling fingertips

It just occurred to me that I could probably google the survival rates for metastatic brain cancer. But I can't. And yet now that I know that it's out there it makes it kinda worse. I really really hate my uncle for making me say all that out loud yesterday. It was easier before I said it out loud.

hahaha I think I broke my uncle.

So "Emmanuel" called me last night wondering if I wanted to ride with him when he went to visit Mom today and I had to tell him that she didn't want visitors.  At all. No exceptions. So he got all sad and pouty on the phone. Then he asked how she was doing, so I told him what I thought was good news. I said that she's recovering wonderfully and could come home now except that they want to keep her to run some more tests because they can't figure out where the cancer came from so they're just gonna do another scan.

"She has cancer?"

*shake my head.*  *smack my forehead*
"Emmanuel, she just had a brain tumor removed. She has cancer.  Didn't she tell you that?"

"She said they didn't know what it was or where it came from."

"They don't know where it came from. It's not brain cancer; it didn't start there. It spread to the brain and they don't know where it started or where else it is."

"But they took it all out, right?"

"They took out the big tumor. They couldn't get to the little ones so they're going to get them with chemo and radiation and hope that gets them wherever they came from."

"I don't know what that means. What do you mean, where it came from? And what other tumors?"

"Em, this isn't something they caught early. She has Stage 3 or 4 cancer. It is spreading throughout her body and is in her brain  now. She has cancer and they say she's had it for a while, and they can't find all of it."


Sometimes it's funny to mess with idiot family members.  Sometimes it's just sad.  I think I'll just text "Sheila" if I ever have anything really bad to tell him. On the bright side, though, Mom called me today while I was at the grocery store and told me I needed to come pick her up because they were sending her home today anyway.  But just in case you've never tried to get into the University of Iowa Hospital as a University of Iowa football game let out directly across the street, let me just advise you never to try. The fucking cops won't let you in the parking garages, there are tailgaters in there if you do manage to sneak in, and the football fans all act irritated that the hospital doesn't just shut down for them.  We live in a really fucked up society when football trumps hospitals as a priority.

A letter to unnamed members of my family

I shall call her Sheila, and he Emmanuel, because those are in no way their names so if they ever read this they can't really sue me.

Dear Sheila,
I realize that you still blame me for reporting you to the state for medical neglect, even though I didn't report you and you were totally guilty of medical neglect, for the time you joked on facebook about how your diabetic 4 year old's blood sugar was in the 400s and it was so cute that he didn't understand why he felt sick while you didn't take him to the hospital, and then followed up with the fact that you were told by his doctor to take him to the hospital at 300 but just wouldn't.  Yeah, that happened but I forgive you.  For the accusation, not for being an awful mother, but we'll let the state handle that.  Anyway, about your dad.
He's a vagina. Sorry to be blunt but he's a big weepy ball of mess.  I understand that you hero-worship him in a way bordering on creepy and West Virginia, and that he's totally the most wonderful man ever to gut animals for fun, but he needs to stop blubbering on my mother about my mother. Seriously, you cannot call someone who is scared for her life and bawl incoherently into the phone about how scared you are for her life. This isn't about him, and she had about a million more important things to focus on than making him feel better. Give him a xanax, tuck him into bed (because I totally believe you do that already) and take away the cell phone.

Also, I text. When I get news about mom, I go through my phone and send out one update to about half a dozen people.  If Emmanuel doesn't know how to text, or can't afford to text, then he doesn't get updated. Not just because he makes me want to punch him in his weepy face, but because I simply do not have the time to call everyone who wants updates. I am not going to tell a brain surgeon to hold on while I call your father. Not gonna happen. Because I'm a bitch that way.

So, good luck with the whole reverse Oedipal thing, and the son you'll make blind before he becomes a teenager, and I'll text you updates if I feel like it. Or not. Whatever.

Love,
the black sheep

a quick update

I have no patience these last few days. I have this big huge thing in my life to think about and it just seems like the bullshit minutiae of life should step back for it but it doesn't.  I still ave to unload the dishwasher and come up with something for lunch and dinner every day, and why doesn't all this crap just take care of itself? I have brain tumors to google!

My mother uses a walker now, which is great because now she doesn't have to walk along walls to keep from falling down, but it also makes her look old and frail. As we walked into the Iowa City hospital I suddenly realized how we looked to people. The frail and unsteady woman being held up by her paunchy and balding son, accompanied by her overweight, gray-haired daughter. I had an almost overwhelming urge to tell the doctor that this wasn't real. That's not who we are.  My mother is strong and independent. My brother and I are young. His thinning hair is a joke because it doesn't fit him, and my grays are quirky and premature. We aren't old and we aren't sad or pitiful and the doctor has to make everything right again. Mom doesn't stand between us for support. She stands between us as support, and we need to get back to that again.

I swear, I plan to update you

Big whole blog posts swirling in my head. The involve hospitals and neurologists and one psychotic car salesman from LA who may or may not have coined the term "tv" but who definitely did name his daughter Tee Vee. 

I don't want to know

Tomorrow we go to Iowa City to talk to the neurosurgeon. I am so scared.

It's like a fashion.

Oh my god! Cancer is a big industry. I mean, you see the ribbons on cars and everything (around here it's all pink and teal, because my town is full of breasts and ovaries) so you know there are shops selling car magnets and silicone bracelets, but I never knew it was so huge. There are multi-colored ribbons, and animal print ribbons because they've run out of colors.  And it must be difficult to A) come to a generally agreed upon consensus as to which color means which cancer, and B) keep it all in good taste.  I mean, breast cancer is pink because boobies = girls, but you can't make colon cancer brown because ewwww. And what if I decide I want mesothelioma to be yellow with pink polka dots but then some group in Colorado wants it to be green and red stripes? What governing board hears our appeals? Who makes the car magnets and silicone bracelets? It would be anarchy!

So I actually clocked something that said "Shop by cancer type" and scrolled through all of the ridiculously colored ribbons (bladder cancer is marigold, blue, and purple, because pale yellow was in poor taste.)  And oh my god there is a brain cancer gift basket!  For only $50 I can buy my mom a whole basket full of crap to constantly remind her of the dangerous chicken egg sitting inside her skull!  Of course, I'm not buying that because we don't know what kind of cancer she even has. It could be from anywhere!  Can you imagine the faux pas of showing up at the chemo office with the wrong car magnet, silicone bracelet, t shirt, necklace, keychain, Swarovski crystal bracelet? It would be mortifying!

It's Nawt A Too-mah!

I don't consider myself to be a hypochondriac, but I can be a tad panicky about some things. My father died from colon cancer and now every time I get a slight intestinal cramp I think to myself, "I need a colonoscopy!"  My mother has MS and I'm always afraid I have it whenever my leg falls asleep for a little longer than normal. 
I get headaches.  I've been popping 800mg Motrins a couple times a day for months now.  And I forget words, and call people by the wrong name, and I tell Ryan to hurry up and do her homework when I mean get ready for bed.  I think I need a peace of mind MRI.  I think for the rest of my life  I will worry that I have brain cancer every time I get dizzy or forget something.  In fact, I'm kinda worried about it already.

more disjointed brain thoughts

I met this guy one time who liked to chat. I worked at a convenience store and he was a customer and one day I tried to sell him some new candy bar or something and he kind of chuckled at me. He told me he hadn't eaten chocolate in ten years. His wife had had brain cancer and either the cancer or the treatment had robbed her of her sense of taste, except for chocolate. The guy asked me, "Do you know what happens when you can't taste your food? You gag and choke on it." So he said they had to just dump Hershey's syrup on everything. Steak, salad, chicken noodle soup, all of it coated with Hershey's syrup. For over a year every meal he had with his wife smelled like chocolate, until she died. He said the worst part was, she didn't like chocolate; it was just the only thing she could taste. I don't remember the segue but he said in the end she died because the tumor outgrew her brain. He said they cut away her skull bit by bit to relieve pressure until her head was huge and then when she ran out of scalp to cover it the doctors said they could make more room by removing the brain around the tumor.  He said no and the tumor grew and she died.

This story has been in my mind since 4:00 pm today. That man chuckling at the candy bar, telling me about his wife eating meal after meal doused in chocolate she didn't like, and eventually doctor's offering to cut away her mind just to keep her body alive. It's the only brain cancer story I know, except that Dom Mucci had a brain tumor removed in his teens and woke up left handed. So I guess there's hope there.

The ribbon for brain cancer is gray. As in gray matter. As in the most depressing color in existence.

mom

My grandmother lived into her 80s. She'd been "praying for Jesus to take" her since her mid 70s. She was a hateful old woman who insulted her grand children and sat in judgment of everyone.

My mother is a good woman. She is 63. Today they found a tumor the size of an egg in her head. Hateful woman- 80s. Good woman- early 60s?  This is how I know there is no god.  Well, that and logic.  And cramps.

Scars

I don't usually do this, but I'm doing it here. Dawn, close this window. Read this post in a year or two, but not today. I need to write it and post it for other people dealing with other things, but you do not need to see this. It's not bad or insulting, just in really bad taste to put this up here right now and not warn you away from it. I'm talking out my ass in a voice you own, and I don't want to make you sad with a cancer post.