Four years

Four years ago today, I spent a full day in bed. A hospital bed, getting scooped out and diagnosed with cancer. It was one of the more eventful days of my life.

Even still I am discovering the ways that that day has changed me.

One of the things that has become clear is the way cancer - and specifically surviving cancer - distorts your sense of self and sense of accomplishment.

"Hey, Bettie, You've just survived cancer! What are you going to do next?"

"I'm going to start a new career start a new family write a new book go back to college write a different book start a different career be a stay-at-home mom be a church secretary be a monk be a priest be a bishop no maybe write a book but not that book or the other one but a third one or move across country and have more kids and wait the life of an alpaca farmer seems pretty awesome maybe I would really love that and I could keep alpacas and learn to spin their fleece into yarn and learn to knit and travel to fiber shows or maybe I am going to be a social entrepreneur and start an art spa or get a degree in business or get a degree in nonprofit management or get a degree in communications or get a degree in creative writing and then get my MFA from an easy program or get my MFA from a hard program or get my MFA from a residential program that will mean moving again maybe there's a program in someplace like Nepal or Antarctica or Greenland or some other place that's even harder to live than here and I will blog about it every single day but first I should probably have a regular job so I can pay these oil bills and maybe that job will be my real calling and maybe I'll be really good at it then again maybe I'll be a teacher no wait maybe I'll start my own school no not just one school but a worldwide franchise of schools or maybe I'll write a book."

That's what's in my head every minute of every day, only without the nice spaces between the words. Instead of spaces, there is this incessant reply that groans and drones and lets me know with absolute certainty that no matter what I do it will never, ever be enough.

And that is why my Lenten vow was so utterly unrealistic.

I am so unbelievably happy to be here. I am so happy for all the ways my life has transformed. I am not scared anymore in the way I was before (eg: clinically, pathologically). If anything, I am clinically optimistic. Pathologically idealistic. I want to put on a show in the barn. No - I want to put on a thousand shows in a thousand barns. I want to put on every show in every barn.

Little thoughts, please

Sitting in my blog hopper is a post about my experiences with some eternally Fancy Ladies at a very Fancy Lady Party. It will have to wait.

My aunt died this afternoon.

Please keep in your thoughts my cousin and her son, who lost a mom and grandmother today. And, of course, my uncle, who said goodbye to his wife of many decades.

There will be more Fancy Lady stories from me, but today this has taken all wind from my sails.

Fucking, cancer.

Happy Anniversary to Me

Three years ago, I woke up and my husband drove me to the hospital.

Three years ago, and orderly handed me a surgical gown, hospital socks and a plastic bag to hold all my clothes.

Three years ago, I couldn't wait for the Versed to take effect.

Three years ago, I got to sleep through eight hours of surgery while my family had to pace and drink coffee and poke at the free doughnuts.

Three years ago, I woke up feeling like I had been turned inside out and gently massaged by a two-ton  steamroller covered with rusty spikes.

Three years ago, I found out I had cancer.

It was a very bad day.

Three years later, I'm still here. I've been lucky. I've been blessed. I'm so unblinkingly grateful.

It's a good day.

Multitasking, bitch

So I was in the hospital for five days with "cellulitis." This is NOT code for "I had a little lipo" (wit ya money...)

It's an infection under the skin - like a pimple gone horribly, terribly, atomically wrong. Or like a staph infection.

(FRANK MEDICAL DESCRIPTION ALERT)

It started with a little pimply bump on my upper thigh kind of adjacent to my bikini line, but not directly on it (Thank you Baby Jesus.). Underneath the bump was an area about the size of a quarter that was painful and sort of firm. After Posey's experience, I went right to the doctor and got oral antibiotics. And the doctor told me that, if the area got too painful, I should take Tylenol.

Two days later, the firm area was the size of a kiwi and I was in serious, um, discomfort. There also was an area the size of a dinner plate on my thigh that was red and tender.

And still I was surprised when my doctor decided to admit me for inpatient treatment. Because I am a moron.

And also because I am a cancer survivor, and the fear of recurrance lurks behind every sniffle and every ache and every kiwi-sized cellulitis.

When the phlebotomist came in to take my admission bloodwork, I told her to ask the doctor to order a CA125, the ovarian cancer marker, just to have it in the mix. If something's there, I thought, I want to know.

Once I got into a hospital room, the inpatient doctor came around to have gander at my kiwi and immediately ordered morphine and a surgical consult.

The surgeons came and decided that, yes, they needed to get involved, but that they could do an IND bedside under local anesthetic.

The doctor warned me that, because of the nature of the infection, blah, blah, blah, the anesthetic would be difficult to deliver and the procedure would be "pretty uncomfortable." That is code for "you will feel like you're getting waxed by a shark."

Oh my crap, it hurt. And even the probing conversation about my doctor's take on what it's like to be Asian in this small town did not distract me from the pain. I have devised several accurate analogies, but I hesitate to even use them here, for fear that my readers will all begin abusing narcotics after reading them.

But my hospital stay wasn't all bad.

There were the painkillers, which were mostly effective at eliminating the pain of the excised kiwi.

There were my roommates, two of them, who both got good news. There is nothing better than good news in a hospital.

There was my new Photoshop and other graphic design software***, which may have been easier to learn had it not been for the painkillers. (See my new banner - I did it all by my seyulf!)

And there was my CA125 result. Anything under 35 is considered to be in normal range. A year ago, before we left Florida, my test came in at 6. In August, it was 4. Today it's 2.

Like I said, there is nothing better than good news in a hospital.

***I got Adobe's Creative Suite, which has Photoshop, InDesign, Illustrator, GoLive and a nice new version of Acrobat. I have no idea how to use any of it yet, despite reading the help guides for the past three days.


 

So, yeah, my family's kinda effed up

Sometimes, when you were adopted, you're the last to know.

That was, at least, the case for me.

The year was 1968, which in Deep South years translates somewhere around 1955. My mother was a singe gal in her early 20s going to college, working in the steno pool and dating a guy with serious goals for his future, including a detailed five-year plan.

Then she got pregnant.

She found out in short order that "serious goals for the future" did not and would not include marriage or fatherhood.

You do what you want, but leave me out of it.

And since this was 1968 (or '55) my mother was quietly sent to live with an aunt and uncle several Southern states away, where she would gestate her baby; write lots of unsent letters, poems and lists of baby names in a blue spiral notebook; formulate a plan for her baby's future; and deliver that baby on an April afternoon in 1969.

My mother was not the only young woman to leave her hometown for a year or so and return with a baby. She was not the only person in my extended family, even. I could bore you for hours with tales of secret sons and nieces who were really daughters. For hours, I could bore you.

And you could probably bore me, too.

But really, what were they thinking? Was it just the physical pregnancy that was too shameful to have witnessed in one's hometown? Was anyone fooled? Was a good fooling even part of the equation? Or was the nine+ months away like so many Hail Marys - a proper show of penitence for having got knocked up by a douchebag with a rigid five-year plan?

So anyway, my mother returns to her hometown with a little one in arms. And before even a year passes, she meets, dates and marries another man.

And here's where you're going to feel compelled to judge, and I have to ask you not to.

The man adopted the baby, who got a new birth certificate complete with his name on it, and the newlywed couple decided that it would be a good idea to not tell their daughter anything about it.

Lalalalalala - What adoption decree?

The problem with family secrets is that they never remain secret. When every person in the family knows something about one member, sooner or later someone is bound to mention it.

And that is how my mother and her oldest sister became estranged.

For reasons I could never begin to tell you, I became convinced at age 13 that seeing as how I was a deeply mysterious and complicated teenager, I must have had an equally mysterious and complicated origin. You know those fantasies where you find out that your boring, over-protective parents are just stand-ins for the brilliant, artistic nomads who were your REAL parents? It was something like that.

And I happened to mention something like this fantasy to my cousin, who was two years younger than I, and she informed me that I was half right. Or a quarter right, technically, considering that my birth father with the five-year plan was a boring accountant and not, as I had suspected, Mikhail Baryshnikov or Sam Shepard or any other man who had slept with Jessica Lange.

My mother was furious with my aunt for not guarding her secret more closely. My aunt was furious right back. Or defensive. Or whatever. A phone call was placed and heated words were exchanged.

After that call, they didn't speak more than a few strained words to each other for 23 years.

When it comes to conflict, the women in my family don't play.

And they don't make up.

My aunt came to Mom's funeral two years ago. And in the ensuing months, as I was going through chemotherapy, my aunt did something she had never done. She called me. She listened. She sent her prayers and support. She dedicated (bought? I don't remember RC protocol) a mass for my mother at her church.

My mom would have done the same thing for my cousin if my cousin had lost her mother and was facing a serious illness, or a serious treatment, as it were.

Mom always maintained a line of communication with my cousin. She loved her.

Ironically, my cousin and I felt too strongly the strain of our mothers' relationship, and our friendship over the years has been sporadic at best. We were pitted as competitors as small children. Then became close friends in adolescence. Then everything just got awkward and lumpy as we tried to smooth our friendship over the rumpled mess of history that we were both really too young to understand.

We lost touch except for Christmas cards and ... no, just Christmas cards.

Now my mother is gone and her mother is facing a terrifying diagnosis.

I called her over the weekend to tell her how sorry I was to hear about her mom's illness and to ask how she was recovering from surgery. Honestly, I wasn't sure as I dialed the phone exactly what I was going to say. God. What do you say?

She answered the phone and I introduced myself.

"It's your cousin Elizabeth."

I stopped there, and did not add, "You know, Xerxes and Buttercup's mommy. Maybe you remember me from the family? I'm the one who was half adopted?"

I was relieved to find that she was happy to hear from me. This is my family we're talking about, so I don't take anything for granted. I feared she would greet me with a closed door and yell through the peep hole, "Get away! This is private. Go away cancer girl. Get away from us with all your cancer surviving and your dead mothers. We're all full here."

We talked for more than an hour, and it was just heartbreakingly wonderful and awful and important.

She and her parents are slogging through fresh hell this week. They have a million questions and so few answers. They're on a day-to-day rollercoaster, clinging firmly to every syllable uttered by every doctor and nurse passing stranger in scrubs who speaks to them.

I've visited that country. And I don't recommend it to anyone. But there are some spectacular views if you know where to look.

One two one two, this is just a test

When my week has been thorny, I avoid this space like it is an awkward phone call I know I have to make sooner or later.

And today, I'm really glad I didn't post every day, bitching about how I'm living so far away from so many of my best friends, and about how I haven't heard anything from the college I applied to, and about how maybe I'll get a real job because I have utterly failed at self-employment, about how being the parent of a 3-year-old with a strong personality is a hard fucking job, about how that job is made harder when someone suggests my daughter needs treatment by a mental health professional, about how we expected to close on the house we inherited from Mom only to have another last minute delay, about how....

I'm glad I didn't go into all that.

On Thursday, I got a call from my grandmother and my mom's sister telling me that my other aunt was undergoing surgery that evening because she had been diagnosed with colon cancer. They were hoping they had caught it early, but the surgery revealed that the cancer was in her lymph nodes and in her liver.

If, as you go about your day, you can spare a thought or prayer for my aunt, her husband, her daughter and her new grandson, please send them.

United Health Care can suck my pre-approval

We live in a town where there is one healthcare facility, and every doctor in town is employed by that facility.

This is not hyperbole, the way I might say, "Everyone is driving a Mercedes but me!"

Literally, EVERY physician is employed by this single hospital. And by "literally," I do not mean "figuratively."

In order to find another doctor, we would have to drive 40 minutes in one direction 45 minutes in another direction and 50 minutes in a third direction. (There are only 3 directions and a lake, so don't question me about the fourth direction)

By why would we go anywhere else when our local hospital is not only the premiere facility in our county, but also a regional cancer center and a teaching hospital for an Ivy League medical school?

Maybe because the entire facility and all its providers are outside of United Health Care's network of providers. Every one of them.

And, as a new patient, would you like to know when you're informed that every cent of every charge you incur will come out of your pocket?

When you get the bill and call to ask why insurance hasn't been filed. Insurance has been filed, they tell you, and you're not covered.

The good news is that none of us has required extensive care. We've just tallied up charges for four new-patient visits - one to a specialist - two visits for bloodwork (includes charges for the kid who draws the blood and whatever tests were run on that blood), and a pap screen. With a little luck, the total bill won't exceed $3,000.

Then again, does anyone out there know the street value of a pap smear and a CA-125, because I haven't yet seen the charges for those.

And would you like to know how much I have paid out-of-pocket to United Health Care for insurance coverage since moving to this networkless netherworld?

$2,448, which does not include July's premium, which I was not going to pay until I could confirm that I could actually receive care in the FUCKING CITY WHERE I LIVE.

I have spent two weeks talking to the insurance company, where every employee is expertly trained to use the word They as often as possible.

"They're saying that your doctor isn't in network."
"You could file and appeal and maybe they will cover the visits you've already had."
"No, you can't speak to any of my supervisors because they're all in Moncaco lighting their hashpipes with $1000 bills and performing unspeakable sex acts on your elected officials."

They're also well-schooled in the art of deferring to another department, which may or may not actually exist.

"I'm sorry Ms. Bookish, I can't suck your dick. You'll have to call our legislative blowjobs department. Maybe they can help you. Would you like me to transfer you?"

Anger is not my strength. Some people get angry and powerful. I get angry and ridiculous. My voice - already at the upper tier of tones audible to the human ear - skyrockets into the dogs-only territory. My anger does not harvest results. It garners sympathy.

And that sympathy turns my anger into white-hot, ear-stabbing, molar-cracking rage.

At which point I just start crying.

The biggest holyfuck of it all is that none of us was even sick, and I'm in several thousand dollars' debt to the hospital.

If you want to get really upset, visit Moreena and find out what you can do for a 5-year old who is awaiting her third liver transplant while her parents are dealing with insurance coverage questions.

Then visit Michael Moore.

But for goodness' sake, triple check your coverage before you visit the doctor.


Anxiety, schmanxiety

OK - I started to put this in the comment roll, but it got too long, so here goes:

Gail ~ yes, I absolutely second your assertion that when dealing with depression and anxiety
some kind of therapy (whether counseling or pharmaceutical intervention or both) makes a person feel more like themselves rather than less.

My previous post was about my frustration with the therapeutic process, which isn't easy. But it is ABSOLUTELY worth it.

Kelly ~ The only wisdom I can offer is that, despite my personal frustration with trying to find the right therapuetic fit, I am so happy that I have done something, and I wish I had done something sooner.

What you describe is very familiar to me. Counseling helped a great deal, and medicine made a huge difference. For me, I needed the combination of the two.

And, as many people will tell you, it will be much easier to find what will work for you if you can see someone who is a really skilled diagnostician and has a good reputation for working with these types of medications. It is entirely too easy to get a GP who is less than cautious with the scrip pad, and doesn't care if you have to go through a dozen medications and a couple years of frustration.

I guess I'm saying the important thing is to talk to someone, and talk to someone who knows what she or he is doing.

The really nasty thing about those evil sisters Depression and Anxiety is that they have a cruel gift for self-preservation. They sit around all day - and all night - convincing you that it would be a terrible mistake for you to kick them out of your head.

"You don't want to get better," they tell you. "You won't know what to do with yourself. You won't be funny anymore. You couldn't hack being healthy. You won't be YOU without US."

The thing is, they are filthy frikkin liars, and you should drive them as far as you can into the darkest woods and boot their spiny asses out of the car. Show no mercy.

Or, you know, make an appointment to talk to someone.

Where do I begin?

My husband, JC, is a top-flight mixmaster.

This weekend, as we worked together painting our entry, stairway, hallway and living room, he treated me to the sounds of a lovely mix CD* he originally made for the party we threw ourselves before leaving Florida.

*Or, as I will call such items until the day I die, a "mix tape," even though I know full well the medium isn't a cassette tape. Likewise, I have been looking for a good yoga "video," despite the fact that I don't even own a VHS player, and the yoga product I buy will be a DVD. I am old. I'm going to go put on my dungarees now and watch a commercial for vaginal dryness.

This CD he made is a thing of beauty. My favorite juxtaposition is (withhold judgement and remember this CD was made for a pretty mass audience) Everclear's "I Can't Smile" ("I don't know what's happened to me, I. Can't. Smile.") with James Brown's "Get Up Offa That Thing" ("Dance, and you'll feel better!").

I love that man. My husband, that is, not James Brown.

And he must love me, too, particularly considering what an utter nut I've been over the past several weeks of quitting one medication, starting another, and being generally disagreeable. Or totally agreeable! Or a raging maniac! Or your best friend!

That's possibly an exaggeration of my actual behavior. But it aptly describes my internal landscape.

I share this, not because I think it's a real riveting scroll, but because I know so many people who live on antidepressants, and so many of them spend a lot of time trying to find just the right medication, just the right dosage, and just the right lifestyle/therapeutic complements to the pharmaceuticals.

With all that confusion - and so unfair to further confuse those of us seeking mental health drugs - maybe it helps to share experiences.

The background: I began taking Paxil two years ago after a radical hysterectomy (it helps with hot flashes, you see) and chemotherapy (it also helps with existential dread.)

After being on it for just a short time, I realized that something was missing. Something big - something that usually took up a fair amount of both my waking and sleeping hours: Fear.

You have to understand that I come from a family that mixed fear in my baby formula with Karo syrup. I had so much fear going on that I had ceased to identify it as fear, and I just called it being human.

Hello, we're the Hummingbirds, HOLYFUCKTRAGEDYSTALKSALLOFUS would you like some tea?

To be without fear was such a novel and beautiful experience that it would have made me cry - except that NOTHING made me cry anymore.

Paxil smoothed my psyche into a slippery, impenetrable little ball of wax.

Maybe it smoothed the edges too well. My little marble of a soul was so slick it couldn't gain enough traction too roll.

The only thing that remotely bothered me was the 20 pounds I put on in the year after starting the drug. And although my weight evened out, I couldn't seem to drop any.

I know that any conversation about female weight is loaded with very strong personal feelings. No, 20 pounds is not a lot. But in my case, it was also a 20 percent weight gain. One-fifth more of me. I went up 2 or 3 sizes in a year. This, from a body that had stayed the same size for the previous 15 years. And did I mention that this fucking traitor of a body had also gotten cancer and lost all its hair? It was already On Notice.

Cancer and alopecia, I can take. But 20 pounds?

And that is why I decided to change to a different medication that doesn't have a reputation for weight gain as a side effect.

But after a few weeks on the new med, all those little needles of anxiety that used to prick me throughout the day and wake me up at night have started to return. Last night, I woke up at 1:30 -afraid. Not of anything specific. But I turned on lights to walk through my house. I was nervous about looking in the direction of uncurtained windows. And I did not get back to sleep until 4:30, because every time I closed my eyes, I started to think about all the things in life that could Go Wrong.

And then there is the several weeks of unexpected crying fits, irritability, and general feeling that, no, I'm not depressed - I'm pissed off.

I've decided to go back to my sweet friend Paxil, who smooths my hair and tells me, "THAT'S not something to worry about. Here, eat this donut."

"M-kay," I reply with my mouth full of krueller. "I love you, Paxil."

This experience does, however, raise for me the question of my identity, and how easily that identity can be altered.

Sure, I may have an eternal soul that comprises the bare essentials of Me - the Me that God knows and loves (and only God knows why God loves).

But on a practical, everyday level, Who I Am seems to be made up of What I Do, What I Think and How I Feel. And all three of those components are completely vulnerable to What I'm Taking.

Where does the medication end and I begin?

Maybe the Me is evident in the decision to switch medications again, knowing that, although I will feel less, I also will fear less.

I've got to get back to Paxil soon so this won't bother me anymore.


Barely even trying

So much to cover, so few entries.

First, I had my annual follow-up with my oncologist, who declared that my lab results are "absolutely boring in their normalcy."

I'll take it.

A few days later, I found out that I have osteoporosis (on the border between mild and moderate), and will need to start taking a medication that is quite the rage among the over-80 set. I'm gonna rock it Granny-Style, with 8-12 ounces of water once a week, followed by 30 minutes of standing or sitting upright.

Jealous much?

Included in the osteoporosis informational sheet I received from the imaging center was a list of "fall prevention tips." Fall in this case refers to taking a spill on your brittle hip bones, not the luminous season of the year when the hillsides are ablaze like a box of Crayolas and Woody Allen makes another movie in New York.

At the top of the list was: Avoid wearing high-heeled shoes.

So I went out and bought these beauties from the Stuart Weitzman orthopedic line:

Granny's Dress Shoes

I will not go gentle. No - when I break a hip, I want all the young, strong-boned women who clamor to my rescue to gasp and say, "My God, look at those beautiful shoes!"

AHEM, UH, AHEM

My speaking career officially begins this month with two engagements - pro bono, because I am using them as practice.

What's that, you say?

You've been looking for someone to speak to your group about the pain and promise involved in new growth?

Or maybe you're an executive looking for the kind of speaker who can entertain, teach and touch - but not in a stripper way - to reconnect the people on your staff to the sense of purpose that initially attracted them to their jobs?

I can help. Seriously.

And I'm not that pricey. Yet. Get in on the ground floor of this dream machine.

My presentations include 50 percent fewer cliches than this here post.

Plus, if you're really lucky, I might wear those shoes and break a hip.