Friday, August 31, 2007

I've Dreamed Of This Day For SO Long

Look! The sutures are out! The incision is healed! The scar has already begun to fade! I can finally wear spaghetti straps again! THE PORT FROM HELL IS GONE!

Remember the Monday Hairwatch reports last spring, as we watched my hair grow back cell by tedious cell? Well, starting today, we're going to have the Friday Musclewatch reports. This time we're going to watch my poor missing muscles grow back, cell by cell. And now, I'm off to the gym to workout, for the first time in over a year, with NO restrictions! Halle fucking looyah.

Have a great weekend, everybody.

Thursday, August 30, 2007

A Good Day To Not Die

Well, no news on the scan result front today. I phoned the magic number at the medical records department, and the real live person who actually answered by the third ring told me my chart was gone again. She said this time it had been sent over to the family practice minor surgery clinic, where I have an appointment tomorrow morning to have my port hole stitches removed. Monday's a holiday, so it'll be at least Tuesday before I have another chance to find it.

So I just figured, oh well. I'm probably not going to die today anyway whether the scans are good or whether they're bad, so I might as well just go ahead and have myself a great day. And that's exactly what I did. I had lunch with a very dear old friend, then later on Miss Wanda came over to hang out on my front porch and watch the zydeco parade go by. Yes! How totally cool is that, that the damn zydeco parade, with horses and bands and floats and dancing politicians tossing tootsie rolls to the crowds, went right down my street, passed right in front of my shack!

What's that you say? Did I take any pictures? Why yes, as a matter of fact, now that you mention it, I did:

Superman on the front porch, waiting eagerly for the parade to start. "Is it here yet? Is it here yet?"

"Oh boy, look, Miss Lady! Here it comes!"

Superman and Miss Wanda ogle the majorettes.

Hey! I know these guys! These are the people who teach the zydeco aerobics class at my gym!

Here come the horses! It's the zydeco cowboys!

Superman is about to give this poor horse a heart attack.

Superman and Miss Wanda sadly watch as the last float rolls by. So long, parade.

So no answers yet, but it was an extremely lovely day and sure enough, no matter what the scans end up saying, at least I didn't die today. And I probably won't die tomorrow either. Now I have to go rake all the tootsie rolls off my front lawn and shovel the piles of horse doo in the street onto my roses. Remind me to never again live in a town where parades don't go marching down my street, past my house, on a very regular basis.

Wednesday, August 29, 2007

In Which Our Heroine Continues to Tilt At Windmills

So today is the Big Anniversary. Two Big Anniversaries, in fact: two years ago today Hurricane Katrina devastated my beloved state, and one year ago today I received my own devastating diagnosis of lymphoma.

Remember this old post?

This is what a person with Lymphoma looks like:

  • CT SCAN of thorax with contrast: There is a bulky soft tissue mass ("Brenda") present in the anterior mediastinum in the prevascular space. Appearance is that of multiple matted lymph nodes, some with central necrosis.

  • CT SCAN of abdomen and pelvis with contrast:

    1. Enlargement of the uterine cervix; correlation with pelvic exam suggested as cervical cancer not excluded.

    2. Multiple right ovarian cysts ("Curly," " Larry,"& "Moe," et al.)

    3. Enlarged iliac and retroperitoneal lymph nodes.

    4. Liver appears mildly enlarged. No focal abnormalities are seen within the spleen. Pancreas, kidneys, and adrenal glands are normal.

  • FINAL DIAGNOSIS Right supraclavicular mass ("Gladys") biopsy:

    Diffuse large B-cell lymphoma, most likely of mediastinal origin.

This is what a cancer survivor looks like:

Yup, that was exactly one year ago today.

Anniversaries of devastations are generally a time for looking back, remembering, and mourning the losses; then looking forward and getting on with the rebuilding. I, of course, jumped the gun and did the looking back and mourning and stuff last week. I finished with that. Now I'm already all about the shutting up and moving on.

So today I began with with the next step of my journey. Which is battling my way through the goddamn indomitable bureaucracy to find out what the hell showed up on Monday's CT scans. This morning I rolled up my sleeves and girded my loins and drove myself down to Our Lady of the Damned, fully prepared to wrassle with The Machine.

First stop was the medical records department. I figured since I still hadn't received an appointment notice in the mail, I might as well just request my records and look at the damn scan results myself. So I stood in line and gave the nice lady all the ID cards in my wallet plus my firstborn child, and waited. Ten minutes later she emerged from the back room and told me my chart was not there.

Oooo-kay. I've been through this before. I've learned the ropes, I knew exactly what to do: instead of emitting a high pitched wail while curling up in fetal position beneath her desk and setting my hair on fire, I simply asked her to tell me which department has my chart.

"QM," she said.

"QM?" I said. "What the fuck is QM?"

"Quality Management," she said, not very helpfully. I still don't know what the hell QM is or why they have my chart, but never mind. It's not time to give up and bring out the matches just yet.

"How long will this QM have my chart?" I asked, quite calmly if I do say so.

The nice lady shrugged. "It could be one day, or it could be three months," she said. "Who knows. You may never ever see your chart again."

Three months? Never, ever??? Gaah!! That did it. I was just reaching for the matches when the faceless bureaucrat at the next desk looked up and said, "They have to return your chart back here every night though. They may come pick it up again first thing the next morning, but they always have to bring it back here at the end of every day."

Ok! This, class, is what's known in the warfare against indomitable bureaucracy as the Extremely Rare Helpful Person. When you come across one of these, I've learned, you must immediately latch on to her for dear life, like a cross between a tenacious pitt bull and the little black leeches in The African Queen, and refuse to ever let go.

Helpless missionary tries vainly to remove tenacious black pitt bull leeches from the body of an ERHP.

Long story short, I milked this ERHP in the medical records department until I had obtained two very useful nuggets of information. One, she gave me a card with her phone number, an actual number that she swears to the heavens will actually be answered by an actual live person before the third ring. By calling first I can allegedly ascertain whether my records are available before I drive all the way back down there. She said I may also be able to request that certain pages from my chart be held for me at the medical records desk, even if QM plans to take the other 499 pounds of pages to do whatever the hell it is they do. I'll believe this when I see it, but hey it's worth a try.

Second, the ERHP told me where to go to find out when my next appointment is scheduled at the oncology clinic. WHY has nobody ever told me this invaluable secret before now? It was so simple! No waiting, no crying, no screaming, no throwing chairs or making out with Johnny Walker for fifteen hours. I just walked straight up to the secret window, handed the nice woman all the ID cards in my wallet plus my firstborn child, and explained what I wanted to know.

And it's a damn good thing I did this, because after futzing with her computer for a few minutes, this nice lady informed me that I don't have ANY appointments scheduled AT ALL, ever again, with the oncology department. Holy fookin Roomba! This is a major screwup, of the first degree. I was just about to start wailing and whip out the matches, when the nice lady said, "Hold on, hold on! I'm going to schedule you an appointment right now." WHOA. She can do that? Just like that? Holy hell, the things nobody ever told me.

So, ok, bad news! good news! bad news! good news! It's beginning to look a lot like Chinatown around here, isn't it? The good news is, she made me an appointment to go find out the results of my CT scans! The bad news is, she made this appointment for September the fucking 20th. That's 3 weeks away! Can we imagine what kind of basket case I'm going to be if I have to spend three very looooong weeks in suspended animation waiting to hear whether I'm going to live or die?

Oh hell no. Nuh-uhn. That's just NOT going to happen, people.

So my proactive quest for the Holy Grail of my CT scan results continues. Starting tomorrow, those unfortunate faceless bureaucrats in the medical records department are going to become very very familiar with the aroma of burning hair. I am going to get my hands on those damn scan results if I have to burn down the whole damn building. Stay tuned.

P.S. While patiently awaiting news of the CT scan results, you may all feast your eyes upon this particular miracle of ultrasound radiology:

No, that little jelly bean nestled in the tunnel isn't a tumor. It's my beautiful, gestating grandchild! Yes! This perfect little person is expected to emerge and join us in this magnificent if occasionally flawed world next February. Seriously, you talk about your stay tuned! Yeeeeeeeee haw! If the creek don't rise and the elusive scan results don't spell D-O-O-M, I'm finally gonna be a real GRANNY!!!

Monday, August 27, 2007

The Road From Scanville

I finally had my CT scans this morning: head, neck, chest, abdomen, and pelvis. And even though I had to drink the nasty ass contrast drink, I must say Our Lady of the Damned was at her very finest today, and it was actually quite a pleasant experience.

No, please! Don't die of shock! Sometimes that really does happen.

Anyway. I was sitting there in the waiting room, dreading the hideous drink and struggling to peel the lid off the bottle, when a vaguely familiar woman in an orange t-shirt walked up to me. I recognized it as the very same orange t-shirt that was handed out to cancer survivors at the fundraising games a couple of weeks ago. "So what happened to your purple hair, girl?" she demanded. She took the nasty ass drink bottle out of my hand and opened it for me. "Let me go get you a straw," she said. "It's easier to get that evil shit down with a straw."

A minute later she returned with my drink and a straw, and then she stood in the middle of the waiting room, cupped her hands around her mouth, and loudly announced that she needed all cancer survivors to gather round pronto. Five total strangers stood up and formed a protective circle around me: they cheered, and made me laugh, and talked me through the ordeal until I'd managed to gag the very last drop of the nasty ass stuff all the way down. And keep it down. At which point the entire waiting room erupted in relieved applause.

Somehow the trains seem to run on time in the radiology department, and a record breaking two minutes later I was called into the back. While a nurse was sticking the IV in my arm, my old friend Dr. G, the head of the radiology department, popped into the tiny needle room to say hello. He performed two procedures on me last year: a needle biopsy in my chest, and an emergency guide wire removal from my groin. I'm a little concerned about why, out of the eighty-eight gabazillion million patients he must see in a year, he still manages to remember me so damn well. I especially worry because I was under twilight anesthesia for both of his procedures, so Sweet Baby Roomba only knows what the hell I said to him. He is an extremely attractive man.

So today he bopped in and told me I looked really good. I said thanks, but I only hoped I look good on the inside. "You will," he said confidently. "Except your spine will still be horribly twisted." Shit. Now HOW does he remember an irrelevant detail like scoliosis? This is the department big shot, the head honcho, so he certainly doesn't take the routine scans himself, or even read them. Should I be flattered or horrified that the memory of my deformity has stuck with him for over a year?

And then he said: "Look, that's Frida Kahlo on your shirt!" Well so it was. I confessed that I'm a bit of a Frida buff, and he told me he's from Mexico City and a big fan of Frida and Diego himself. And next thing you knew we were off, talking a mile a minute about Mexican painters. At one point he asked me if I'd ever been to the Blue House, and the oddest thing happened: I could feel my lips moving, and then I heard what sounded like my own strangely detached voice saying, "Not yet. But if these scans come back clean, I'm planning a pilgrimage there in the fall." WHOA. I am? Huhn. Funny, because just last night I was worrying about whether I would starve to death or freeze to death first come winter, given my dire financial situation. "You know, cancer kind of kicks you into acting on all those dreams you've been putting off," I heard the voice that sounded a lot like mine say.

"Good," he said, beaming the most dazzling smile straight into my heart. "Before you go, let me know and I'll give you a list of murals you should see." Not if I go. He didn't say "if." What a dear sweet wonderful man.

I don't have an oncology appointment yet to hear the results of the scans, but it should be within a week. I may have to drive back down there tomorrow and ask the chemo nurses to check the computer, because the oncology clinic has been really bad about not mailing me the notices on time. And I can't really get on with my life until I know the results. Everything's on hold, in a weird kind of limbo. I've been putting off stuff like signing up for classes, planning trips, falling in love, and so forth until I have some kind of indication of what the next six months will bring.

I hope and pray that Dr. G is right. I'm SO ready to get moving with rebuilding this life. And his list of Mexican murals just might be the best possible thing to look forward to.

Friday, August 24, 2007

An Email I Sent Today

I don't know what you want or expect from me. But I'll try to make my position as clear as possible.

You treated me with cruelty when I was most vulnerable, you kicked me when I was down, not once or twice, but repeatedly. This consistent pattern is well documented in emails from the past year.

On Friday, September 1 2006, 63 hours after I was diagnosed with cancer, you responded to my request that you treat me with kindness, empathy, and compassion by accusing me of expecting you to "check your balls at the door" and "become a spineless wimp." You wrote: "I'm not interested in changing my ways one iota, not now. It's worked very well for me up to now. I'm certain it will continue to work for me in the future."

I realize now that I should have listened to you and believed that you really meant exactly what you said.

You also accused me of trying to change you, and in a way you were right. I wasn't so much trying to change you myself, as hoping against hope that you would be willing to change yourself. But subsequent months proved to me what a mistake that was. I finally realized that my only choice was to either accept you exactly as you were determined to remain: angry, narcissistic, controlling, unwilling to engage in genuine emotional intimacy; or to terminate the relationship. I chose the latter and I don't regret it.

Now I'm slowly and carefully rebuilding a new life for myself. I don't know whether this new life will be measured in months, years, or decades, but I do know one thing with absolute certainty: however long or short my new life is going to be, there is absolutely no place in it for people who treat me with cruelty or kick me when I'm down. There's no place for people who believe that empathy and kindness are spineless wimpy women's work, beneath their contempt. There is no place for people who are unwilling to change and learn and grow emotionally. I don't know how much time I have left, but I do know it's not nearly enough to waste one precious minute on people like that.

So I have no friendship to offer you.

Best wishes with your own future, I hope it continues to work very well for you.

Tuesday, August 21, 2007

Flunking the Mortality Test

Today brainhell tossed a grisly gauntlet before his readers: he challenged us to enter a contest in which we write a vignette describing his death.

Wow. The man is hard.

His loyal longtime readers are well aware that with ALS, the loss of respiratory function is going to be the most likely cause of his death. At some point, brainhell will probably become completely unable to breathe. And this, he has told us, is an extremely unpleasant way to die.

Progressive weakness in the muscles of his respiratory system has already made breathing, coughing, and swallowing difficult for him. This condition can cause him to aspirate saliva, which could result in a fatal lung infection such as pneumonia. Or he might go into a laryngospasm that closes off his airway so that he can't inhale, can't take a breath, can't even call for help, causing him to suffocate, helpless, panicked, alone in his bed. Or he might die of cardiac arrhythmias caused by insufficient oxygen. There are many possibilities, almost all involving the utterly horrible terrifying nightmare of not being able to breathe.

We all know this, his devoted readers. We know it well. And yet so far, not one commenter has dared to broach this hideous prospect, much less compose an actual vignette describing the agonizing details. We're much too busy dancing and twirling around it in a cowardly frenzy of upbeat denial.

But by doing so I wonder if we haven't somehow abandoned our brainhell, leaving him all alone with his terrible truth. Here he invited us to join him, to keep him company by graphically imagining his own personal tenth circle of hell, but not one of us has been brave enough to accept the invitation. I'm especially feeling like a lily-livered hypocrite myself right now, after all my blustery bravado about bravely sticking my head straight up the rosy pink anus of mortality and crap like that. Hell, the best I could do was conjure up Emily Dickinson's meaningless fly on the windowsill.

Ok, let me try again. How's this: brainhell chokes to death from laughing so hard at us all for being such sorryass cowards in the face of his challenge. Not this particular challenge of course, but another one, equally daunting, issued somewhere way way down the line.

Sunday, August 19, 2007

You Can't Go Home Again

I had a strangely surreal experience last week. The wife half of the couple that bought my old house two months ago called me up and invited me to come over for a cup of coffee. She said she was dying to meet the woman who had once lived in this beautiful old dream house, the woman who had planted all the magnificent roses in the yard, the woman who had left the sticker on the underside of the toilet seat that says "A Feminist Was Here."

Whoa, go back to my old house? I was terrified! Would it be devastatingly heartbreaking to see these strange new people happily living in my house? Would it bring up all kinds of repressed feelings of deep sadness and loss and homesickness and envy? (Because really, you know, I've been quite happy and content here in my tiny shack. But who knows what kinds of deep underground shit might get stirred up by returning to the scene of the tragedy?) I panicked and dithered but finally my curiosity won out over my fears and I said ok, I'll be there in five minutes.

So then suddenly there I was standing on "my" beloved front porch (which, by the way, was crowded with strange stuff I'd never seen before), ringing my own doorbell, waiting for a total stranger to open the door and let me in. It was beyond weird. But even further beyond weird was when the woman opened the door and stood there looking totally blank. "Yes?" she said, as if she wasn't expecting a visitor.

"Hi," I said cheerily. "I'm the, uh, woman you just spoke to on the phone, the one who left that sticker under your toilet seat?"

She stared at me for a moment, and then slowly comprehension began to dawn. "Oh!" she said. "Oh my goodness! You... I was expecting... You're not... I thought... I heard... I really thought you were going to be a decrepit old lady! I thought we'd bought the house from this very decrepit, very sick, very old lady." (Note to self: kill all former neighbors asap.) "I'm sorry," she said. "Come on in!"

And from the moment I stepped through the front door, everything felt like a dream. Like one of those eerie haunting dreams where you go back to a house where you used to live a long time ago but nobody there recognizes you and everything is totally different. Exactly like that.

Unfamiliar things were everywhere! The new family has four children, and they hadn't quite unpacked from the move yet so there were boxes overflowing with stuff in every room. Along with a whole lot more furniture and knickknacks and, well, just things than I had. The house was much more cluttered, but I think it was a happy, lived-in kind of chaos.

And weirdest of all, on top of all their unfamiliar stuff, they had kept almost all the things I had left behind when I moved. Mixed in with their possessions were pieces of my furniture, art, books, just all kinds of miscellaneous items I couldn't take with me. I mean, I moved from a 3,000 square foot house into a 600 square foot shack, so of course 90% of what I owned couldn't possibly come with me. I donated a lot of things to charity, threw a lot out, sold the mahogany dining table to a neighbor, but I was so overwhelmed and exhausted by the end of the move, I just walked out and left tons of stuff behind for the new owners to deal with. And it was the oddest sensation now, to walk through the rooms and see my old forgotten things mixed in with their unfamiliar things in the old familiar rooms that suddenly looked so strange and unfamiliar. I thought maybe my brain might break.

But you know what? I didn't feel sad at all. It made me extremely happy to see that the new people not only hadn't hauled my detritus off to the dump, but they were actually enjoying it! They were thinking of my rejects as exciting mysterious valuable antique treasures they'd discovered up in the attic of their very old house. The woman would be saying things like, "My mama wants to take this beautiful old piece on Antiques Roadshow!" and I'd be thinking, "Hmmm, I think I remember buying that thing at Target, or maybe it was World Market? back in 2004." I didn't want to disillusion her, but I just couldn't stop laughing.

Anyway, yeah. Going back to the old house was breathtakingly strange and surreal but it was also a happy and utterly freeing experience. I know for sure now that I really have let go and moved on. That enormous, wonderful, cluttered, extremely high-maintenance old house is somebody else's headache now, and I'm glad. Because it means I'm officially a Free Man in Paris, unfettered and alive.

Saturday, August 18, 2007

The Day I Dyed For The Cure

Hey look! I "Dyed For The Cure" at the big annual cancer fundraising games today.

First they spiked me...

And then I went with bright purple! Looks great with my lovely official orange survivor t-shirt, which entitled me to a free lunch and a free massage. W00t!

My friend Josh went purple too, in solidarity.

I ran into my old buddy Scott, one of the lung cancer guys I used to hang out with at the oncology clinic. He's the only one of that lung cancer group that's still alive, and in fact against HUGE odds, he's even in remission. Go Scott! He doesn't really have enough hair yet to dye.

The free catered survivors' luncheon was very nice. We all looked très butch with our cool short hair styles.

Josh bravely entered the football toss contest and came in second!

To hell with the damn cure, we're totally abstaining from that hula hoop contest.

It was a fun day but, um, but I forgot one minor detail: because of my surgery yesterday, I'm not supposed to shower for three days. So here I am stuck with these unfortunate neon periwinkle wilted spikes until Monday. Oh well!

Friday, August 17, 2007

The Gory Deets

Whew. Ok. So that was really freaky, being wide awake under the knife with nothing but lidocaine to blunt the pain and terror for an hour and a half. The reason it took so long is that it was a teaching situation: a surgeon was talking a young resident from Cuba through her first portectomy, while another resident watched.

So I lay there on the table, wearing a pair of black shorts covered with white dog hair and draped with green sterile cloths, staring up wide-eyed at the big bright round light, listening to the head surgeon's running commentary. "That's it, press down all the way through the dermis. Watch the blood, watch the blood! Good. Now tilt your scalpel a little to the, the other way, the OTHER way...yikes! You don't want to accidentally slice that big vein. Ok, now pull that skin flap back using the small skin hooks...waaay back, stick you finger up inside the wound cavity as deep as it will go: see if you can feel where the tissue is attached to the back of the mediport...."

Glurk. I had distinctly mixed feelings about the fact that there was no overhead mirror for me to watch. Anyway, there I lay on the four foot long table with my feet dangling off the end (what's with that???) and my face stretched into a frozen silent Munchian Scream for an hour and a half, and it's a miracle it didn't stick like that permanently.

It was actually kind of fascinating though, listening to the surgical patter. Sort of like watching Grey's Anatomy. I kept expecting them to dart off into the broom closet any second to have a hot threesome affair. Anyway, they didn't play loud rock music like surgeons in the movies always do, or tell off-color jokes, but it was otherwise an extremely casual come-as-you-are operation. Nobody wore masks or scrub caps or even cafeteria lady hairnets, so lord knows what ended up drifting down from the atmosphere into my open wound cavity while they stood around discussing horizontal and vertical mattress suture techniques.

And yeah, the whole procedure felt incredibly creepy, all that slicing and tugging and pulling and finger probing. Not painful, once they got enough lidocaine shot into me, though injecting the lidocaine way up into the muscle behind the port hurt like a bitch. (Ooops, I'm sorry. Finnie? I should have warned you not to read that last sentence. Could somebody please pour a bucket of water over him?) But I could feel the pressure and tugging and all-purpose creepiness and it was squicky as hell.

They used an extra strong type of suture especially for me on account of I plan to do lots of extremely heavy lifting, plus I'm not squeamish about scars. I take the big over-the-shoulder pressure bandage off on Sunday, and I go back to have the stitches removed in two weeks. And after that, YES! I can start working out!

This was almost the happiest day of my life. I would have felt a whole lot more festive if I'd been sitting on some clean scan results. But hey, I'll take what I can get: at least the hideous port is finally out. Y'all settle your bets amongst yourselves now, I'm going to go chug some Tylenol and tea. I'm still feeling kind of woozy and my port-free chest is aching like the dickens.

Recovering with concerned support network hovering anxiously on the loveseat.

Nurse Dolly monitors vitals.

Stern Burly Nurse Soop strictly enforces visiting hours.

Caretakers need naps too!


Enormous pressure bandage, so the pouffy little pocket of stretched skin won't fill with blood.

It goes over the top, causing me to hunch my shoulders up to my ears like Nixon.

Gory deets to follow as soon as I stop trembling with shock.

I can't believe it actually HAPPENED!!!! Aiiiiyiiiiieeee!!!!!

Thursday, August 16, 2007

In Which Our Heroine Is Once Again Strangled With Red Tape

Well surprise surprise: no scans happened today after all. It turns out the oncology nurse I spoke to on the phone Tuesday doesn't have the authority to reschedule new scans; the authorization has to come directly from an MD. So they sent me running all over the entire hospital for an hour this morning, where every department on earth met me with bewildered confusion. Nobody knew what the hell to do with me. But I persevered.

Somebody in radiology finally had the prescience to send me up to 5 North, the chemo ward, which has absolutely nothing whatsoever to do with my situation at this point, but for some reason the chemo nurses seem to be the only people in the whole damn hospital who can ever figure out how to make the system work. Plus they're so wonderful! It's always a pleasure to go visit the ol' gang up there--I'm so inexplicably happy to see them, the beloved sadists who tortured me for six months. I believe this is called Stockholm Syndrome?

Anyway, sure enough the ever-knowledgeable chemo nurses figured out a way to reroute me over to the internal medicine clinic where, after a zippy three hour wait, I saw a resident who ordered CT scans for NEXT week. I'm just thankful they discovered the mistake BEFORE I had to drink the nasty ass drink.

Oh, and the IM resident examined my thumb and shrugged it off. She said it looks like a lipoma, but I'm here to tell you the nodule is very hard, not soft to the touch. So I'll ask an oncology resident to look at it when I go in for the results from my scans in two weeks.

Meanwhile, the mediport removal is still (theoretically) scheduled for tomorrow morning. I was afraid they would try to talk me into postponing it to make sure the scans came back clean, which would certainly be the sensible logical proper thing to do. I was ready to fight them tooth and nail though, knowing it would probably take anywhere from two to four months to get a new surgery appointment. But the resident just shrugged and said, "You should have had that thing taken out six months ago." Indeed.

So I'll be heading back down to Our Lady of the Damned bright and early tomorrow morning, fingers crossed, to beg them to yank it out once and for all. Place your bets now, while the pool's still open!

Wednesday, August 15, 2007

Read It And Weep

When staying alive means going bankrupt: Health insurance didn’t keep cancer-stricken California woman solvent

LOMPOC, Calif. - Kathleen Aldrich, financially ruined by two bouts with ovarian cancer, is not who you might assume she is.

She raised three kids as a single mom. She worked hard for years. She had good jobs. She paid her bills. She lived in a nice house and drove a nice car. She had a decent credit rating. She had health insurance.

Now she has a record of bankruptcy and is the embodiment of the fear that nags at millions of U.S. families: that they are but one medical calamity away from losing everything. Like Aldrich, they — and perhaps you — could be.

Very scary and sad article, but read it anyway.

Tuesday, August 14, 2007

In Which the Author Plays Hooky

Ok. So I've been wondering when the hell my August CT scans were going to be scheduled, anxiously checking the mail for an invitation, worrying and fretting and then double checking the mailbox again every day because there's no way to just call Our Lady of the Damned on the phone to ask. Nothing in today's mail. Damn. I had really hoped to have the scan results BEFORE I go in to (at least theoretically) have my port removed on Friday.

But then a few minutes ago the phone rang and oh my god it was an oncology nurse from OLD wanting to know why I missed my appointment at Onc clinic today! And why I missed my scans last week! Crapoloosa! I never got the fucking invitations in the mail! I had no idea!

I was panic stricken and on the verge of tears, figuring it might be MONTHS or even YEARS before they rescheduled me, if ever. But listen to this: the amazing and heroic onc nurse made me an appointment for the scans on Thursday, yes THIS coming Thursday, day after tomorrow, the 16th of August, at 9:00 am! I doubt they'll have the results read in time to stop the port removal the next day if the news is bad. But oh well, at least I'm finally going to have my six month scans.

Ok. Yes! Thursday! Day after tomorrow! GAAAAHHHH!!!! Please excuse me now while I go throw up as an intense wave of scanxiety plows me down like a Mack truck. I'm terrified! I'm so not ready! GAAAAHHHH!!!!

The scanxious author performing frantic last minute calisthenics in preparation for the imminent scans that loom ominously on the horizon.

Sunday, August 12, 2007

The Chosen and the Not Chosen

More fun cancer news in the papers today! Snipped from an article about Washington Rep. Ross Hunter titled State lawmaker goes radioactive in bid to kill cancer:

This is the three-term lawmaker's second bout with lymphoma, a cancer of the immune system cells. Doctors treated the first, diagnosed in 2006, with a standard chemo regimen, but monitoring near the end of the 2007 legislative session showed the cancer had returned.

This time, his doctor recommended something more effective but rare: a single, extremely high dose of Bexxar. This concentration of the drug, developed locally and pioneered in this method by Dr. Oliver Press of the UW, isn't widely used for a handful of reasons. Approved by the FDA in 2003, it's relatively new and expensive at about $20,000 per treatment. Only three hospitals in the country -- and maybe a total of five worldwide -- are equipped to handle a radioactive patient, post treatment.

In essence, a patient needs what Hunter has: the right cancer, physiology and medical coverage. This truth isn't lost on him. "Thank God I have great insurance."

So I wonder, exactly how does this God decide who gets a second chance and who doesn't?

Saturday, August 11, 2007

Stop the Presses!

Snipped from an editorial at one of the daily rags:

A Newspaper reporter assigned to spend 12 hours in the emergency room at Our Lady of the Damned found dangerous overcrowding, long patient waits, health-care professionals under overpowering pressure, patients using the ER for non-emergency conditions, psych patients and homeless people boarding on the premises, and emergency bed usage at capacity, forcing diversions to other hospitals.

Blah blah blah working on ways to deal with the crisis blah blah blah funding stalled blah blah blah high-cost and low-profit blah blah blah create task forces blah blah.

If officials were required to duplicate the experience of the Newspaper reporter who spent 12 hours in an overcrowded, stress-filled emergency room, funding probably would come quickly.

You think? One of our favorite sources of entertainment during interminable waits at Our Lady of the Damned is when some privileged white person with an overblown sense of entitlement somehow ends up in one of our dangerously overcrowded stress filled waiting rooms, and appalled at the savage way he is being treated, attempts to Do Something About It.

Ha! We the Defeated and the Damned already know that The System is an impervious brick wall and if you try to bang your head against it, you're only going to give yourself a bloody concussion. But watching another naive powerless fool have a go at it can provide us with minutes of amusing distraction.

The System is not only an impervious brick wall to its unfortunate users on the inside, but also to any force that tries to change it. My own prediction is that task forces and funding won't make a dent. The System is rotten at its very core, and I fear that Our Lady of the Damned will soon go the way of King-Harbor in L.A. As much as I hate OLD, the possibility of losing it is utterly terrifying.

But nevertheless, to the reporters and readers from the Newspaper: Hey, y'all! Welcome to Reality!

ER waiting room at Our Lady of the Damned. Photo by Newspaper reporter.

Friday, August 10, 2007

It's Worse Than You Thought

Ok. I wasn't being entirely straight with you. It's not just the curtains and throw pillows plus the occasional t-shirt and concrete statue. It's a whole lot worse than that.

Frida distributes arms to the Communists on the desk.

Frida illuminates the back porch.

Frida watches the amphibians play chess.

Frida flies with the time.

Along with Diego and Catarina, Frida juices the microwave.

Frida frames the back yard.

Frida competes with the view of a tree.

Frida carries the checkbook and a dog-eared underlined copy of Bandit: Dossier of a Dangerous Dog.

I suppose future generations of blog scholars will dedicate their lives to defending dissertations that purport to explain: Why Frida? Well, hell, if it enables them to make a decent living so they can support their own freaky tasteless habits, good for them.

But frankly, just between y'all and me? Don't make too much of it. Because the answer to Why Frida? is probably 90% Because she's every god damn where you turn these days. I mean come on, what are the odds of ever finding, say, Stevie Smith curtain fabric, or Flannery O'Connor drawer pulls, or Shelley Duval switch plates, or a B. Dagger Lee purse? We take what we can get over here at the Shack O'Deflated Tumors. And hello future blog historians! In the Year of Our Roomba 2007, the eBay it was flooded with the cool inexpensive Frida stuff. Simple as that.

Oops, one more:

Frida reacts to pain and betrayal by compulsively chopping off her own hair and documenting it in her art.

In Which Our Heroine Goes A Bit Overboard With A Theme

So in a fit of maudlin and macabre madness today I decided to sit down and make a list of all the things I 've been meaning to do that I'd better hurry up and do now, before my right hand is amputated. Just in case this turns out to be thumb cancer. You know, stuff like join a bowling league, perform brain surgery, learn to play bagpipes.

It was a depressingly long list, but the good news is: I actually managed to accomplish one item, to finish it, to check it off, cross it out, say woo hoo. Yes! After living in my shack for what, two months now? I finally finished sewing my Frida curtains, out of the fabulous Alexander Henry print fabric that's called "Frida's Garden."

Close-up: Frida with her parrots and monkeys and tropical plants

With her paint brushes and icons and oh my god, are those Stapelias? Ewwww!!

A festive backdrop for the newly recovered loveseat.

And yes, we have an unfortunate case of Frida home decor mania run amok: those are Frida throw pillows. Great Roomba, enough already!

Thursday, August 09, 2007

Bad Day, Bad Week, Whatever

Ugh. Yesterday was a nightmare. Every cell in my body was on fire with pain, and my brain was lost in a deep dark pit way over the edge of some place you really don't ever want to go. This is Cymbalta withdrawal, and damn it's hell on wheels.

But I think today's going to be better.

Many thanks and apologies to all my patient abandoned guinea pigs, and others waiting to hear back from me on sundry matters. Hang on gang, my deep-fried brain and I will float back to the surface soon.

Tuesday, August 07, 2007

Guess Who I'm Dating Now

Who's that behind those aviator Doggles?

Hint: He's a handsome celebrity...

A well-known star...

Of course! It's so obvious. You probably just didn't recognize him without the cigarette.

Eat you hearts out!

Sunday, August 05, 2007

Missing In Action

My deepest apologies to you all for the unscheduled lapse in blogging and personal training. I've got some medical crap going on. For one thing, I'm going through a brutal withdrawal from Cymbalta. It's pretty miserable, even though I'm tapering the dose and using citalopram as a crutch.

But I've also got a bigger worry. The joints in my right thumb are shot to hell, swollen and painful with the tendons shrunk so tight that I've almost completely lost the use of the thumb. When I mentioned this at the oncology clinic in June, the resident shrugged it off, said it's normal for chemo to damage tendons and cause stiff painful joints for a while.

But this is something else, and it's getting worse. I showed it to my private GP last week, and she said I should definitely get it looked at by an orthopedist at Our Lady of the Damned. There is a painful inflamed swelling that she said could be a ganglion, or maybe arthritis, and it needs to be x-rayed. What she didn't say but what I know is that it could also be an osteogenic sarcoma, a cancer of the bone and connective tissue.

I should be getting an appointment for my routine six month CT scans any day now, and that will be followed by an oncology clinic appointment a week or so later to discuss the results. But there's no way I can penetrate the system to be seen before then, so I'm left to stew in my anxiety, and it's really kind of knocking me for a loop.

I know, I know, it's probably nothing, maybe I won't have to have my right hand amputated after all. But it hurts, and my thumb is almost paralyzed, and I'm scared shitless. Well, wouldn't you be?

Anyway, in the temporary absence of real live blogging, I hereby offer you some old previously unpublished stuff in honor of the upcoming one year anniversary. It might be easier to read it in three or four sittings, it's kind of longwinded and overwhelming.

These are a series of emails I sent to "the painter" last August, almost a year ago. I'm omitting his replies for privacy reasons. These were written during the week after my second biopsy, right before I got the results. At the time, doctors suspected that the tumors in my chest might be advanced lung cancer, and I was looking at possibly having less than six months to live. It was a rough, raw time in many ways.

August 24, 2006
Dear Painter,

What does this mean, when you wrote to V: "Liz gets pretty down at times, and it sometimes comes out of my hide, but I can take it, especially if it helps in the long run."

Comes out of your hide? How so?

I mean, wouldn't it be maybe be a little different if you would be kind and tender and compassionate instead of bossy and angry and mean when I'm feeling vulnerable and upset? I only lash out at you when you're yelling at me, withdrawing from me, or trying to control me. When all I want is kindness and understanding.

I really hate this feeling that you talk to your friends about how I'm the difficult patient, the crazy unstable one who "gets pretty down at times" while you calmly patiently heroically stand by and try to deflect my "fits," all supposedly for my own good. Do you ever tell them about how you yell at me, or walk away from me when I'm crying?

I hate being the one you need to go dancing at RNB or WR to get a break from. It breaks my heart, it hurts so bad.

Jesus I hope we can work this stuff out before it's too late. I wish I knew how to get through to you. I need so much to feel like you're on my side.
Not just my body's side, but my soul's side. I wish that you cared as much about my hopes and dreams and fears and wishes and feelings as you did about which hospital I go to or which medications I take. That you cared as much when I cry as you do when I cough. I just can't understand why asking for these simple, human acts of friendship instead of just purely physical caretaking is "taking it out of your hide."

I'm sorry. This whole thing just really hits me the wrong way. So what am I supposed to do, to avoid "taking it out of your hide"? Just never feel down? Or never share it with you if I do? What? Tell me what you'd prefer I do when I'm feeling sad or hopeless or frightened. Call some anonymous 800 number? Wait for next week's therapy appointment? Take sedatives? Go to the ER for 9 hours, while you go dancing at the RNB? What? Tell me where else to turn for genuine emotional friendship, if it's so damn hard on you when I turn to you. I'm serious, I need to know.


August 24, 2006
Dear P:

Of course I understand your need to get away from it all, to have fun, to enjoy the music, the activity, the noise, the interaction; to flirt, to feel happy, to revel in the friendship and warm closeness and companionable pleasures, to feel the powers of your own sexiness in the arms and smiles and appreciation of other women. I know that need very well, because it was mine for so many years too.

I feel like a total selfish asshole if I tell you that it stabs me in the heart, hurts me to the core, when you go dancing while I'm home sick. You probably resent me for trying to make you feel guilty, and maybe you should. But how much longer can I stuff my feelings, before they explode later and end up doing more harm? To us as a couple, and to me physically. Maybe it's already too late, the damage is done.

But I don't know what else to do except be honest and say: this hurts me. It really hurts me bad. If my saying that destroys your love and respect for me, then I guess that's the price I have to pay.

It wouldn't hurt so much if you were just out having dinner with friends, going to art museums or movies or concerts, hanging out with [your son], enjoying that kind of interaction, having that kind of life. But dancing! I know all too well that dancing is a very different way of "interacting." The dressing up, the looking good, the sly smiles and sexy hips and subtle eye contact. I know it all too well.

And part of what hurts me so much is that dancing was once MY great love, and now my illness has completely robbed me of it, possibly forever. Now it's all yours to enjoy, happy and free of remorse, while I sit here feeling hurt, bereft, left out, trapped like an impotent prisoner in my own hideous unhealthy body, stuck with my embarrassingly painful emotions, drowning in my own bleak despair and unattractive self pity. It hurts me worse than anything you can imagine, that this is the kind of break from me you choose. And I think you know, or at least strongly suspect that it hurts me. But you choose it anyway, without apology.

I do understand that all this is very hard for you too, that because of my illness you've suffered losses of your own dreams and pleasures, that you're also grieving and mourning what could have been, that you're uncertain and stumbling in your own pain, feeling helpless and lonely and angry and scared.

I know that you have needs of your own that often don't include me. And I know that you need more joys in your life, things that I can no longer provide you, even though it nearly kills me to admit that horrible truth.

So what else can I do but say ok, fine, go have your fun. But then I can't help it that even though I wanted you to be happy, I end up sitting here hurting so bad, hating myself, wishing this damn sickness had never happened, wishing I'd never met you, wishing my heart didn't ache so bad, wishing I just had somebody somewhere I could talk to who would listen and care and understand my pain, while you're out dancing and having fun.

I don't know the answer. I understand how you feel and what you need, but that doesn't change how I feel. My immediate tendency is to want to pull away from you, to withdraw, to close off my feelings and shut myself down so I won't have to feel any more pain. Maybe there's a better way, but I'm not able to see it right now. Maybe a counselor could help me see it. I don't know.

Sometimes it all just seems so goddamn impossible, so hopeless, and it's at these moments that death starts to look like the best answer, a welcome relief to me. I mean, sometimes I just want to get it over with quickly, not just to spare myself all the inevitable suffering, but so I can stop inflicting suffering on other people, especially you, but also the kids.

At least the kids are both taking this opportunity to reach out and try to really get to know me, we're dropping all the barriers and talking to each other in honest open ways that we never dared before. It's awkward sometimes, and hard but also incredibly wonderful. It's been really good for all three of us to have this experience, and I'm glad we've taken the chance to risk it. I wish I could have that kind of authentic relating with you. But wonderful as it's been I know if it drags on too long, it's going to become too big of a stress for them too, and that kills me, that I'm hurting them now. Hurting them, hurting you, hurting me. Please, please, somebody make it stop soon! For all our sakes.

I'm not much for praying, but I can't tell you how often I've prayed to die soon and deliver us all from this horrible miserable hopeless mess I've brought on us.

I hate it when people talk about how "strong" or brave I am. I'm not. I'm only going through the moves, taking the next step, enduring whatever happens until I can't any more. Trying to put on a brave happy face to make everyone around me feel better. The truth is I'm a lot stronger at enduring physical pain than emotional pain. And this hurt and loneliness in my heart, this desperately needing a friend that I'm feeling right now tonight is getting pretty close to my limit.

I hurt, I need help, and I honestly don't know where to turn. I just don't know.

I hope you had a safe trip. Let me know that you made it home from the dance safely.


August 25, 2006
Dear P:

I'm just too vulnerable right now, my emotions are too raw, and I really need to put up a wall and protect myself. I can't trust you to not hurt me. I can't trust you to not blow up at the hospital, fly off the handle, lash out at me, be mean to me, refuse to listen to me, yell at me, try to control me, get mad at my feelings if they aren't exactly what you wanted me to feel. I need to protect my raw vulnerable scared hurting self. I have too much other shit on my plate right now to handle the hurt that's been coming from you as well. All this loneliness and crying is just not good for me.

That's part of why I don't want you to go to the hospital with me for the biopsy result on Tuesday. Because I need to be steady as a rock, I need to be strong and open, I need to be able to feel whatever emotions I feel in response to the news without worrying about you getting mad at me, or trying to take over. I need to ask questions without being interrupted, and maybe make decisions you won't like. I can't trust that I can be and do those things with you in tow, always ready to go off at any time like a loose cannon if the hospital, or the doctors, or the nurses, or I, make you mad.

It's probably best for us to take some time apart for a while. I'm not talking about breaking up, just maybe having some space between us for a while, a few weeks, whatever. Maybe until we can find a counselor and get some help. Or until I'm not so raw with hurt. You can have a break from me, get your fun noisy life back, and I can try to build some semblance of a new life, since I've lost two of the things that once meant the most to me, dancing and weight lifting, the passions that gave me strength and pulled me through when times were bad.

I need to find something new that I can do to bring meaning and passion and purpose back to my life, however short it may be. I need to keep myself as much as possible in a strong, serene, positive state of mind. I need to not be distracted by fighting with you, fending off your anger and hostility and negativity, and constantly feeling the emotional fallout from it. At other times, I could have been more independent and stood up to you and stood on my own two feet. I could have been ok with whatever you dished out, and not been broken down by it. But now I can't, and I'm tired of being knocked down.

So let's take some time apart. You stay there and paint and dance and do your thing, and I'll do my best to try to rebuild my own shattered positivity and inner strength and determination. I'll do what I can to find somebody I can talk to, who will listen to me without hurting me. I'd prefer a loving caring friend, but if I have to pay a professional, it's better than nothing. If I have to pay somebody to drive me in for more biopsies or treatments, I can do that too. If you can find a couples counselor and are still willing to do that, I'm willing to go and give it a try. I'm just not willing to go on hurting like this and feeling so lonely, lonelier when I'm with you than when we're apart.

Thanks for letting me know that you had fun and got home safely.

Till later,


August 26, 2006

Yeah, I'm well aware that being apart is as good for you too, if not better. That was a disaster, having you just sit here for over two weeks doing absolutely nothing day after day except resenting me and getting mad at me. I didn't even need you to be here the whole time, other than the driving to & from biopsies. I'm not exactly an invalid in need of a full-time caretaker yet, and you don't seem willing to offer me emotional support, so there wasn't really any reason for you to stay here that long. I'm sorry I didn't put my foot down and make you leave sooner. I won't ever let that happen again.

I'm also pretty well convinced that we won't ever really get married. I understood that we probably wouldn't when you told me you hadn't told [your son] we were "engaged." You tell me you have a good relationship with him, but you've also made it clear that I am not going to be part of that relationship. After a year I've only seen him once, for a total of 3 minutes, even though he lives a few miles away, and never met anyone else in your family. So again, I understand that though your mouth says one thing about marriage, your actions and your deepest heart are really saying another: I'm not going to be part of your family.

It's all talk, just like building a house here was all talk. I'm ok with it, we are nowhere near able to get along well enough to consider marriage at this point anyway. I just wish you would be honest about it, instead of pretending it's going to happen.

I keep wondering why you keep going on and on about how horny you are, working it into every email conversation no matter how out of context, irrelevant, or inappropriate. What's up? Are you trying to tell me that you're getting sick and tired of how my illness has made me sexually unavailable to you? Believe me, I'm painfully aware of that and it makes me really sad. You don't need to keep reminding me or pressuring me. I
feel like enough of a failure as it is. But please be honest and direct, that's all I ask. If the underlying message is: I'd better shape up and put out or you're going to have to start looking elsewhere to get your needs met, please just come out and say so directly rather than all this weird out of place sexual innuendo. Thanks.

I hope your painting is going well.

Love -L.

August 28, 2006
You say:

"I'm just not in any hurry to make any life altering moves, be it marriage, moving, building or anything else. That'd be stupid at this point."

Wow, that's the exact opposite of what you've been saying in the recent past. So there's been a change of heart? Why?

I'm having a really hard time feeling close or connected to you. We seem to be so very alienated, but not talking about it, making small talk pretending nothing's wrong. There's a strange distance but when I try to talk about what's really going on you say I'm being "too harsh." And you suggest maybe I'm just having a "slump" like there's nothing really wrong between us?

I have no idea what our relationship is any more. A few weeks ago you enthusiastically wanted to get married right away; now it's been moved to the back burner because getting married sooner would be "stupid." What caused this sudden change of heart? I can't help but wonder what was up with all the yelling and anger and impatience and blame you were directing at me when you were here. And the way you don't give a flying fuck how I feel about you going dancing, you've let me know loud and clear you're going to do exactly as you damn well please and I can just stuff my damn hurt feelings up my ass. Will you please be honest and tell me what's going on?

It's true, I'm feeling much better since you left. A lot is probably emotional, the body mind connection. I like feeling strong and independent and peaceful again, it's good for me to get up and move around, I don't like being sent to bed, bossed around, or yelled at when I cry. Those two weeks you were here left me feeling so hurt and distant from you. I desperately needed some time to get back on my feet, back to being myself so I can be strong enough to face the biopsy results tomorrow.

I feel much happier now that I'm spending time around people who are kind to me instead of yelling and angry. The inflammation has gone down, the edema improved. This doesn't mean the underlying disease is cured, it just means my body is relieved to not be so stressed and crying all the time. I think it's easier to heal when I'm not so stressed.

Your words say one thing, that you love me and that I'm the most important thing blah blah blah. But it was too much to ask you to stop yelling at me, to just be kind to me and not keep hurting me? I don't understand the discrepancy, but my experience has been that actions speak louder than words.


August 28, 2006
Dear P:

Sure, I get frustrated with the public hospital system. But I guess I just deal with my frustration in a different way. While I'm trying to concentrate on getting medical care, in the immediate moment, I just try to focus on being calm, positive, enduring, staying focused on how to move to the next step.

When things got rough, the waits were long, the system confusing, I needed so much for you to just reach over and calmly say something kind and encouraging, like Hang in there, you're doing great, we're going to get through this, it's going to be ok, I'm right here with you. But instead you seemed to be putting all your energy into negative stuff like looking for somebody to blame and resent and criticize, ranting and fuming and occasionally exploding, being so intensely angry and bitter at the hospital, and also at me for not letting you take me to a private hospital. I wished so much that you would just set the anger and blame aside until a later time, and while we were there in the thick of it, just be there with me.

And I want to be there for you too. It was stressful for both of us, I know, but your anger made it much worse for me. I ended up feeling alone, and so guilty for not being able to afford insurance.

As for the yelling, maybe you're not aware of how often or how much you raise your voice when you're being stern, controlling, authoritarian, angry. Maybe it's just your way of reacting when you feel anxious and helpless, I don't know. But it doesn't feel very good or comforting to me. I wish that instead of getting mad, you could just talk about how you feel, and I could be supportive or comforting or whatever you need.

Thanks for your response. It makes me feel better. My heart is feeling very sad about the way things are between us right now.

I love you,


This was the last letter I sent him before going in for my biopsy results alone the next morning and being diagnosed with lymphoma. The next night he went out dancing again, while I sat at home and cried, and hated myself for doing it. Damn, what a nightmare. What a relief to be a year into the future, past all that.