Saturday, May 19, 2007

As the Tumor Turns: The Missing Months

Before I started this blog, I sent out mass emails to a group of close friends and family members to update them on my condition. The subject line in the emails was always "As the Tumor Turns," which is where the name of the blog came from. Here I reprint some of those updates, written to my loved ones during the six weeks between my diagnosis and when treatment started.)

As the Tumor Turns: The Singalong Episode
September 13, 2006

Dear Gang Members,

First of all: Great news on the GYN front! Since my pelvic CT scan showed an enlarged uterus and malignancy needed to be ruled out, I had an appointment with Dr. GYN scheduled today. (Sorry if this is way TMI for some of you. Finnie: close your eyes!)

Dr. GYN: Ok. An enlarged uterus. Let's see. Yes, ok, it's enlarged. Mmmm-hmm, definitely enlarged. It''s.. whoa, this thing is HUGE! Good LORD.

Me: Wow! Cool. Um, HOW big? I mean, what is "huge"? Are we talking grapefruit? Basketball? Breadbox? Volkswagen?

Dr. GYN: I'd say at least fifteen weeks.

Me: Fifteen weeks???? !!!!#@%$!!!

Dr. GYN: Oh, I'm sorry. Ms. Lymphopo? Could you please come down off the ceiling so we can finish the exam? "Fifteen weeks" is just a means of measurement we OB-GYNs use. There is no actual fetus involved.

Me: Shit, man. Don't even TALK like that!

Dr. GYN: Well then let me just say this is the largest non-pregnant uterus I have ever seen in my entire career. There doesn't seem to be any sort of mass or malignancy involved, it appears to be entirely benign, but it's just....huge.

Me: So what causes an enlarged uterus?

Dr. GYN: Well, one common cause might be carrying a very large baby to term. Was one of you children extremely large at birth?

Me: Why yes, as a matter of fact, one of them was. [AHEM.]

Dr. GYN: I'd guess, oh, about 40 pounds from the looks of it?

Me: Yeah, I'd guess about 40 pounds too, from the way it FELT.

Dr. GYN: Well congratulations. Apparently that was a fine big baby you had, what, 25 years ago? Nothing needs to be done now, except maybe to notify the Guinness book.

In other exciting Cancerland News:

It turns out I'm not having my mediport installed until October 9th, and the chemo will start a week or two after that. So unfortunately I probably won't be bald yet when Julie comes to visit the weekend of Oct. 15th. But I will have this hideous device protruding out of my jugular, jutting though my skin and chest wall, picking up radio stations and stuff. That will be almost as cool, and I'm sure she'll be duly impressed.

The chemo regimen I'll be on is called R-CHOP 21. Let's all sing along now (to the tune of Gilligan's Island):

R stands for Rituximab (a brand new highly effective monoclonal antibody-targeted drug, the future of cancer treatment);

C is for Cyclophosphamide (aka Cytoxan, which makes
Agent Orange look like a pack of Twinkies);

H is for Hydroxydaunomycin (aka Adriamycin, which
destroys heart muscle and causes instant death);

O is inexplicably for Vincristine (aka Oncovin--oh, look, there's the O!) which destroys the nerves, blisters the skin and dissolves the veins;

P stands for Prednisone, an anti-inflammatory that will make me gain 30 pounds a month even when I'm vomiting like a dump truck every five minutes, and it will also makes me totally insane!;

21 means I'll get to repeat this fun process every three weeks, for maybe four or five months. Wheee!!!

(Ok, you can stop singing along now.)

Before I start the R-CHOP 21, I'll need a few more tests: another CT scan, this time of the head and neck; another echocardiogram, to see if my heart has given out since the last one; a sonogram of my ovarian cysts (Moe, Larry, & Curly); and a MUGA scan.

(Now let's sing again, you know the tune:)

MUGA stands for MUltiple Gated Acquisition.

(OK, stop singing.)

The goal of the MUGA scan is to ascertain that my heart is healthy enough for me to receive Adriamycin, which is going to thoroughly destroy it anyway, and also to serve as a baseline to measure the accumulative damage from the Adriamycin, so they can discontinue it about 3 seconds before my heart is reduced to a pile of smoking rubble. State of the Art health care!

That's it for this week. I ordered some cunning little caps and scarves for baldies which haven't arrived yet. I also cut my hair even shorter thinking the chemo was imminent. Which is fun, because now all my doctors ask me, "Hey, how's the chemo going?" and then don't believe me when I tell them doesn't start until next month. Anyway, I'll send embarrassing pictures when the cunning little caps and scarves get here. I'm still debating the whole gristly wig question.

Y'all's assignment this week is to go out and stop acting your age for a day, then report back to me with the results. If anybody needs bail money, we can probably take it out of the New Shoes For Liz fund, if the correctional officers will let Finnegan give us the password. Meanwhile, I have attached a photo of this very same FINNEGAN, taken five minutes after he was born. Hi, Finnie! Bigger than a breadbox, buddy!

Take care, gang, till the next episode of As The Tumor

-Liz (aka Mom)

The 40 lb. baby that stretched my uterus to kingdom come

As The Tumor Turns: Shocking Unretouched Knitting Photos Revealed
September 18, 2006

Dearest Gang Members:

For some unknowable reason (actually, hydrocodone is right up near the top of my own personal list of theories) I suddenly got a wild hair up my ass (or is it a wild hare? I've never been sure, and frankly, I'm afraid to look) to learn how to juggle before I die. This could be a good thing since I'm hopelessly spazzy when it comes to basic hand-eye coordination. My learning curve may be so pathetically flat I'll be forced to postpone dying for like maybe 70 years or more.

Anyway, as soon as the hair/hare began to tickle, I rushed over to eBay and purchased some colorful little sand-filled balls that won't bounce all over the house if I drop them (I thought it might be prudent to refrain from starting off with the flaming live chainsaws, and just work my way up to them gradually) and an instructional DVD called "Chainsaw Juggling For the Ineducable Klutz." So y'all will soon be receiving gripping biweekly multimedia updates on my juggling and/or amputation progress!

This is all part of my new quest to find sedentary housebound activities to replace all the adventurous athletic outdoorsy stuff I can no longer do, like rock climbing, sky diving, motorcycle racing, and swimming out to Alcatraz and back everything morning. So far I've got juggling, knitting (see attached unretouched color photos!), reading tarot cards (I've ordered a few more colorful turbans and some gold hoop earrings), playing with my new Waldorf kindergarten art supplies, and, um, well ok that's a start. If y'all can think of any other electrifyingly entertaining housebound pursuits (shut up, J.), please send me your ideas. Considering my hydrocodone impaired judgment, it's probably best if they don't involve any heavy machinery or hot glue guns.

Shocking unretouched knitting photos

On the medical slash mental health front we've got a fairly slow week ahead, with long stretches of nothing then a couple of insanely overextended days interspersed in the middle. On Wednesday I have a CT scan of the neck & chest in the morning, then in the afternoon J. and I have our first couples therapy appointment. On Thursday I have a MUGA scan in the morning, then I see my new therapist P. in the afternoon. I'm already exhausted just thinking about so much bustling activity!

I also need to call my dentist this morning and make an appointment to have a $650 crown put in, since I have some ominous cracks in a wayback molar and can't risk having it break during chemo when the danger of fatal mouth infections runs alarmingly high. Never a dull moment here in Cancerland!

I've been going to the gym for a little while every day, jogging a slow mile on the treadmill and doing some embarrassingly light lifting. I have good days, and then I have days when Stephen Hawking could kick my butt, but I am noticing a gradual increase in my stamina. Since all my hard-earned gluteal muscles have viciously catabolized themselves, I'm having an ongoing issue with my shorts slipping down past my hoo-ha when I jog. For this reason I've been making an extra special effort to wear clean attractive briefs to the gym.

J. has been urging me to go out dancing with him, and I've reluctantly agreed to give it a try as long as we go to one of the nearby black-owned smokefree organic juice bars with sterilized rest rooms and only the hottest funkiest groovinest zydeco bands (i.e., not Travis Matte). He's looking into our options.

That's it for now, gang. Stay tuned for a heart-stopping blow-by-blow playback of my hair-raising MUGA scan.

Yours till the tumor turns,
-Liz (aka Mom)

As The Tumor Turns: The Return of the Mad Hatter
September 24th, 2006

Hello, gang members!

It's been a relatively good week out here in the far reaches of Cancerland. So good in fact, I almost forgot I was sick, which is why I've been kind of lax about sending out updates. Oops.

Special thanks this week go out to L. for offering to let me stay in her charming little beach cottage on an unspoiled tropical Florida Island. I'll be taking her up on her kind offer next spring when I finish treatment. This is going to be my Big Special Thing that I can look forward to, the carrot on a stick that will get me through the roughest most brutal stretches of chemo, the way I will reward myself for making it through 18 weeks of sheer hell without slaughtering any innocent bystanders. Thank you so much, L.!

Special thanks also go to Alex who has offered to send me her laptop since Harrison got her a newer fancier one to use for grad school. Yay Alex! Come on, everybody knows I couldn't survive five minutes in the most gorgeous tropical paradise without a computer. Thank you!!! No wonder it was such a good week.

Let's see, I had a CT scan of my neck and a MUGA scan of my heart, and I should get the results of those tests when I meet with a terribly young oncology resident on Tuesday (since when did they start letting sixth graders go to med school?). If all is well, the mediaport (as Julie calls it, since it picks up wi-fi) is still scheduled to be installed on October 9th. And then stand back: it's open warfare against the malignant invaders!

Speaking of open warfare (hahaha, just kidding), J. and I had our first appointment with the couples therapist on Wednesday. Unfortunately I didn't like her. It just didn't click for me. She seemed to me to be too formulaic and condescending. I couldn't stand the way she talked down to us in a singsongy voice, like she was scolding a couple of naughty children. Yuck. I was also mildly disturbed when she asked me if I would consider going to a different hospital, besides Our Lady of the Damned--I mean, hello, we're talking $60K+/month in treatment costs. Did she think I might just switch to Deep Inferno General on a whim and pay up front out of pocket? Shyeah.

Also she gave J. the names of a bunch of "caregiver support groups" that all meet at hospices. HOSPICES! Um. I mean, we're not talking about bed pans and morphine drips yet, for chrissake. I prefer to think of him as my "main support person" rather than my "caregiver" at this point, since I'm still very much ambulatory, able to feed myself, take my own showers, wipe my own butt, drive myself to the Wal-Mart, jog a mile every day, and juggle live chainsaws. All at the same time, backwards and in high heels!

So we won't be going back to that therapist. My fabulous individual therapist P. gave me the names of several couples therapists she knows and recommends so we do have other options.

But things seem to have been going very well on the True Love front lately (knock wood). J. was here during the week and bless his saintly (but not TOO saintly!) heart, the sweet man fixed my dishwasher which has been broken since I moved in six and a half years ago. Mr. Mechanical Genius dragged it out on the back porch and took it apart and ran all over town looking for parts and stuff, and now it runs like new. Having super clean dishes is going to save my life once I start chemo and my immune system gets knocked halfway to Mars. In other saintly news, Mr. Renaissance Macho Man has also been taking my skirts home and shortening them for me on his sewing machine, in preparation for my new image as a skinny-legged baldheaded sexbot.

Speaking of bald headed sexbots, a bunch of fetching new protective cranial prosthetic devices arrived in the mail, and yes, there are PICTURES!

Ok, that's it for now gang. I meet with a 12-year-old oncologist on Tuesday, and have an echocardiogram on Thursday. I had an appointment scheduled with P. late Thursday afternoon, but I'm going to reschedule that since they've started having zydeco cardio workouts at my gym on Thursdays, and I want to go. Miss Wanda went last week and she said it was a blast. A fun 45 minute aerobic workout, without having to breathe any secondhand smoke or touch anybody's sweaty old germs. How perfect for me now!

With love until the next episode of As The Tumor

-Liz (aka Mom)

As The Tumor Turns: The Ascendance of Misanthropy
September 27th, 2006

Hello again, gang members!

The good news from Cancerland this week is threefold.

1. Last Wednesday's CT scan of my neck was shamelessly normal. No hideous neck tumors! I even had the names picked out: Arthur if it was a boy and Betty Lou if it was a girl. I guess I'll have to save those for any
future cacti.

2. I passed my MUGA scan with flying colors. Since I have the heart of a healthy 21-year-old, I've been declared eligible to submit that perfect little heart to highly toxic doses of the chemo drug Adriamycin, which will reduce it to a steaming pile of myocardial fecal matter in a few weeks.

3. Now that my eligibility has been declared, I've been given an official start date for my chemotherapy: 8:00 am on Wednesday October 11th. Two days after my mediaport surgery, and two days before Julie arrives from Brooklyn for a weekend jaunt to her old stompin grounds. (What does Miss Manners say about the etiquette in a situation where a hostess vomits like a dumptruck every five minutes in front of her houseguest? Should the guest pretend not to notice and just continue to devour her Louisiana home-cooked meal of deep-fried pig penises? or should she join the hostess in the pukathon, or what? Julie! Research this!)

Tomorrow I have to go have a $650 crown put on a cracked molar. I can't risk having the tooth break during chemo, when mouth infections can be fatal. It's funny, I'm dreading the dental work more than I am my upcoming surgery to have a permanent catheter inserted through my chest and down into my jugular vein. At least the surgeons will give me fun drugs; all I get from the damn dentist is two hours of listening to bad 70s Muzak while my mouth is wedged wide open with what appear to be a dozen S&M party favors. Plus a free sample of dental floss if I refrain from screaming or dismembering the hygienist again.

I'll tell you what I'm sick of. I am so tired of people asking me probing questions about my lifestyle, in hopes of discovering that I somehow caused my own cancer by being irresponsible in ways that THEY would never consider. "Did you smoke? Did you fail to have yearly physicals? Were you trapped in an abusive marriage? Did you snort pesticides out behind the garage every weekend?" Then they can say, "Whew, I'M safe! I never poured Round-Up on MY breakfast cereal!"

The flip side is the schadenfreude folks, the chain smokers who live on scotch and Krispy Kremes and haven't done anything more strenuous in 20 years than lift the remote. They just love it when some uptight health-food junkie, exercise-nut gym-rat like me gets cancer, because it proves how worthless all that healthy lifestyle propaganda crap really is. They may smoke ten packs a day and be 250 pounds overweight, but ha! THEY'RE not the one who got cancer, are they?

This is one of the lovely little side effects of cancer they never tell you about, that you end up hating everybody. I think the only person I truly love any more is the UPS man who brings me fun new prezzies every day: books and crayons and DVDs and wild wigs and live chainsaws to juggle. Everybody else on earth can just bite me.

Except of course you guys. I love all of y'all too.

And if anybody's wondering why I never answer my phone these days, it's because I've turned the damn ringer off until after our hot controversial local election Saturday. I get an average of 437 campaign calls per hour, mostly from obscure candidates I've never even heard of, and at that rate I'd NEVER achieve my quota of medically prescribed naps. I'm enjoying the phone-free silence so much, I may leave it off until after the next presidential election. If anyone MUST reach me, resort to email. I tend to forget I have voice mail.

That's it for now. No new pictures this time, but if my tumor bursts dramatically through my chest wall or anything cool like that, you'll be the first to receive a second-by-second photo documentary of the event.

Love until the next horrifying episode,

-Liz (aka Mom)

My Dearest Gang Members:

Hello again from Cancerland! I see our old friend the Big C has made an appearance in the news today: "Farrah Fawcett Staying Positive Despite Cancer Diagnosis." Ms. Fawcett (who is almost 60--how the hell did THAT happen?) is quoted as saying, "I deeply believe in one's own positive will to overcome even the most daunting challenges."

Well you go Farrah. Over here at the Chez Le Lymphoma Shack, where we have just been informed that we face the most daunting challenge of having to pony up $4,000 cold hard cash every three weeks for the next six months to pay for a drug called Neulasta which is necessary to prevent us from shuffling off this mortal coil 24 hours after each chemotherapy treatment, we have developed a sneaking suspicion that positive attitudes may be a luxury of the fully insured.

Oh and don't get me started on the whole celebrity cancer treatment phenomenon. I tried to read Lance Armstrong's cancer memoir, and to paraphrase my beloved Dorothy Parker, this is not a book to be tossed aside lightly; it should be thrown with great force. And not just because the writing totally sucks and I could write much better but nobody's chomping at the bit to publish ME, are they. No. Listen, this is his idea of "beating the odds": one hour after he's diagnosed he holds a press conference and within minutes all the leading oncologists in the universe had jumped aboard his bandwagon. State of the art treatment starts the very next day, expenses be damned.

What, am I bitter? Just because it's been six weeks since my diagnosis and new tumors are popping up everywhere (yes! say hello to Sylvia and Phyllis, the newest Easter eggs in my armpits!) and all I've done so far is have surreal conversations with 12-year-old oncology residents whose scripts were clearly a joint collaboration by Franz Kafka, Lewis Carroll, and George Orwell? Ok, maybe just a little.

Nevertheless, we wish Ms. Fawcett the very best in her battle with the Big C, and only regret that we can't be a fly on the wall the first time she wanders into a wig store and sees row after row of smiling wig stands decked out in her own immortalized if extremely unfortunate 1970s wing-ding hairdo. At the risk of appearing tastelessly negative, we remain a huge fan of the irony over here at the Chez Le Lymphoma Shack.

Other news from our little Shack O' Negativity: I will start my chemotherapy treatments on Wednesday the 11th, so yesterday J. and I went to chemo school. It was just the two of us and a nurse (our old friend Pam, the one who helped me survive my first biopsy in August). We watched several entertaining videos. The one on how to inject drugs into your own excessively squeamish self was my personal favorite: "If you ,accidentally touch the needle, discard the whole thing immediately in your puncture-proof bleach bottle with the Clorox label still attached so the neighborhood junkies will never suspect it contains used hypodermics, and start over with a new syringe." Uh-hunh, and this would be the pre-filled Neulasta syringe that runs me $4K per pop.

From the videos and the several thousand cheerfully glossy brochures Pam gave us, we learned the following fascinating factoids:

1. Only white people get cancer. Not only that, only affluent fully-insured attractive white people with utterly bland earthtones home decor get cancer. I'm wondering now if perhaps I should seek a second opinion on my diagnosis.

2. Chemotherapy causes these affluent white people to float through their bland earthtones with dreamy beatific smiles as they go about their ordinary daily activities, which consist mainly of eating breakfast on the patio with the guy from the Cialis commercials and watering the bedding annuals along the driveway. Nobody ever goes bald, gets abysmally depressed, or projectile vomits all over the boring Macy's bedspread.

Pam also had the thankless job of informing us that once I start chemo treatments, all my bodily fluids will become lethally toxic and J. must "take precautions" not to come into contact with any of them, or he too will lose his lunch and his hair and have to pay $4000 for his own fucking Neulasta. I also have to make sure the dogs don't drink out of the toilet after I've used it (which means what, remove those tiny little wee step ladders??), and I have to always take care to flush two or three times so the next person isn't injured by my biohazardous waste products when they splash around in the toilet bowl.

So, dear friends, we and our negative attitude are down to the wire here at the Chez Le Lymphoma Shack. I almost feel like I'm about to be deployed to Iraq! I have to be at the hospital on Monday morning at 5 am for the surgery to install my mediport. Then on Wednesday at 8:00 am I'll be going in for my first chemo session. It should take about 6 or 7 hours, since they have to drip the evil stuff verrrry slowly or else it will totally dissolve my veins and send me into dramatic toxic shock seizures.

So what, you may be wondering, can YOU do to help out at this point? Well, those of you who are fully insured can adopt the elusive positive attitude for me on Wednesday morning. And since the Adriamycin is going to destroy my heart's muscle fibers, greatly increasing the likelihood that I might need a heart transplant, you can all go get your DNA tested to see if you might be a potential heart donor.

That's it for now. But next week the plot will finally thicken and ensuing episodes are guaranteed to include PICTURES! Pictures of my new mediport poking through my bruised bloody skin, pictures of the Red Devil being dripped slowly into my jugular while I pose for Edvard Munch, pictures of me industriously holding bake sales and bikini car washes, because like Farrah I believe that One's Own Positive Will can easily
raise $4000 every three weeks to pay for the Neulasta, even if it occasionally involves projectile vomiting all over somebody's peanut butter brownies and just-washed BMW.

Love and negativity to you all!

Yours until the tumor turns,

-Liz (aka Mom)

(It's been kind of weird for me to look back and recall how naive and upbeat and optimistic and foolishly brave I sounded before the descent into chemo hell.
I'll post more of these old email updates over the next few days.)


Anonymous Anonymous said...

Seriously, book publishing professionals of the world who are probably not reading this but should be, is this not great reading? Can you not totally envision a memoir composed entirely of these e-mails? These are awesome! Awesome, I tell you! Engaging! Hilarious in parts. You'd barely have to edit at all.

BTW, Liz, love those black hats.

5:17 PM  
Blogger Kathy said...

I want to know how big that baby was. My biggest was over 11 lbs. Did I top you?

5:54 PM  
Blogger Mel said...

You could totally do that... I love Saraarts' idea of publishing it in its original form; just a group of e-mails and letters from you to the gang. Hell, you even already have a great name for it.
I'd buy it!

3:23 AM  
Blogger Jamie said...

You are such an inspiration---and so very, very funny. I have read your blog for awhile now, and i know the hell you have gone through, and I applaud your humor, your effort, your intelligence....and more.

6:58 AM  
Blogger Ya Looblue said...

thanks for sharing this Liz. i second/third/fourth everyone...publish.

7:20 AM  
Blogger Christina said...

Hey Liz,

If you DO look to publish these e-mails (which I think you should; they're great) ...STOP putting them on your blog.

Publishing houses want ORIGINAL writing not something other people can get elsewhere.

So if you're going to take the idea of getting published seriously, leave the best stuff for your book.

And by the way, I hope you do it!

6:25 PM  
Blogger Robert Brashear said...

Just a comment on original works - I love Anne Lammott and the majority of her work appears on salon prior to publication in her books. Weird but true.

10:57 AM  
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