I have something embarrassingly irrational to confess: I have a deep superstitious neurotic fear that the sheer hubris of insisting that my hideous port come out early will be punished by an immediate relapse of the cancer.
There's been so much in the news lately about The Evil Cancer Coming Back: Elizabeth Edwards, Tony Snow; I'm sure there's not a cancer survivor alive who doesn't shudder with terror when these horrible headlines start flashing all over the place, reminding us daily of our tenuous reality. Yes, it could happen. The odds are uncomfortably high that it WILL happen. And marching confidently into the Department of Minor Surgery and having the hideous port yanked out two years ahead of schedule seems to be just asking for it, you know what I mean?
But here's how I rationalize it. The hideous port is holding me back from lifting weights at my full capacity, and therefore it's preventing me from regaining the significant amount of muscle and bone I lost during the past year to cancer and chemotherapy. With the hideous port gone, I can get my game back. I can repair the damage, restore the lean body mass, rebuild the strength I will most definitely need to fight and even to survive if the cancer does come back. So it's not about vanity, it's about staying alive.
Skinny little pipe cleaner arms: not good.
I mentioned a few weeks ago that the gym where I used to work as a personal trainer asked to help out with teaching a weight loss class. Never mind the appallingly bad taste in having an emaciated cancer patient get up and instruct anybody about how to lose weight. I can't tell you how frustrating it is, trying to reeducate these women who've been brainwashed into the whole conventional starvation diet combined with excessive cardio mentality. They are slowly killing themselves with their unhealthy eating habits. They turn in their food logs, and when I see things like "Breakfast: 1 slice of toast and a Coke," I want to scream and tear out my pitiful little peach fuzz (fortunately it's too short for me to get a good grip and pull). No no a thousand times NO!
I try to tell them to stop thinking in terms of breaking their bodies down and literally destroying themselves, and start thinking in terms of building their bodies up. The way to be healthy and lean is to think good health, think excellent nourishment, think superb strength and beautiful muscle. But they refuse to listen. And I guarantee they will fail. I also guarantee that if they ever find themselves fighting for their lives, they'll be at a severe disadvantage.
My favorite inspirational quote of the decade comes from my all-time top role model and weight lifting guru over at Little Professor. She says:
"My email inbox is full of women complaining about how strong they are getting, and how much they desperately want to be frail. I started weight training and now I am too big! Too strong! My shriveled sinews are suddenly plump and energized! My metabolism that I fucked up from years of ascetic rice cake rationing is suddenly zippy and industrious! I may not die a horrible death from a crumbled hip at 65! The horror!
What the fuck is wrong with young women that 200 years after the first wave of feminism they are still whittling away at their bodies, starving, plucking, shaving, stumbling around incapacitated? Where are the daughters of the mothers who screamed Keep your laws off our bodies 30 years ago and now buy tickets to the Vagina Monologues? Do they not understand that they desperately need to hoard muscle and bone density and overall wellbeing like an obsessive compulsive cat lady hanging on to National Geographics and bits of string?"
This is exactly why I'm having my hideous port removed on May 1st, two years before the doctors recommended. Because I desperately need to hoard muscle and bone density, in order to fucking survive.
Slowly but surely, it's coming back.
And here, by popular demand, is the super healthy high-protein blueberry muffin recipe.
Preheat over to 400 degrees F.
Blend dry ingredients in a bowl:
1 cup milled flax seed 3/4 cup soy flour 1/3 cup Splenda 3 scoops vanilla whey protein 2 tsp. baking powder 1/2 tsp. baking soda 1/2 tsp. salt 1/4 cup whole flax seeds 1/4 cup sesame seeds
In a separate bowl, combine wet stuff:
1/2 cup egg whites (or Egg Beaters) 3 tbs. flax oil 1/2 cup nonfat milk (or soy milk)
Add dry ingredients to wet stuff and stir until just blended.
Fold in 1 1/2 cups blueberries (frozen or fresh), or any other berries or chopped fruit. Batter will be thick. Fill oiled muffin cups (I use canola oil spray) about 2/3 full. Bake at 400 degrees for 18-20 minutes. Yields 12 muffins.
I deliberated long and hard before I decided to take this new drug Cymbalta that my GP prescribed to help with the pain from peripheral neuropathy. This pain, which is a result of nerve damage caused by one of my chemo drugs called Vincristine, has become progressively worse since chemo ended, and is beginning to put a big fat crimp in my QOL. On bad days the pain is all I can think of, and even on the best of days, it's preventing me from doing things I enjoy, like gardening and working out.
I had my last treatment in January. In early February I pruned my roses with no problems, but today my hands hurt so exquisitely and severely that I can barely hold my pruners, much less squeeze them. And I'm just waiting for the day when the pain and numbness cause me to drop an 800 pound barbell on somebody's head, most likely mine.
My life has become pretty darn miserable lately. I have numbness in my hands and arms and feet, accompanied by what's technically called "tingling" but that's way too mild and festive a word. It's really more like an intense constant soundless buzzing. Sort of like when your foot falls asleep, except here it's all four of my limbs, and they never wake up. And this grating neurological cacophony is accompanied by a throbbing, pervasive soreness, achy tenderness, and sharp shooting pains that radiate up my arms into my shoulders. I would like very much for it to go away.
But this drug, Cymbalta. In the few years since it's been approved to treat major depression, generalized anxiety disorder, and diabetic neuropathy (Vincristine induced neuropathy is actually off label but word on the street is it's effective anyway), it has managed to develop itself a pretty nasty anecdotal reputation among users. It's most popular nickname seems to be "the Drug From Hell."
Cymbalta's two most commonly reported side effects are: 1.) turning into a raging homicidal/suicidal maniac, and 2.) gaining 45 pounds. But when people try to stop taking the damn stuff, the withdrawal, even with tapering, is said to be more brutal than trying to quit heroine, cigarettes, coffee, and Grey's Anatomy all at once while somebody is pounding on your head with a sledge hammer and running electric shocks through your brain.
Here are some of the less dramatic symptoms that show up in a google search for Cymbalta side effects:
Wait. That sounds awfully familiar, almost like...hmmm. Chemotherapy? Why the hell would anybody submit to this hell if their life didn't depend on it?
But. You have to figure there's a selection bias in action here: the people who take Cymbalta with very good results and minor or no side effects are not generally the people who stay up all night posting on internet message boards about how Cymbalta forced them to them hack their parents into tiny pieces and deep fry their spleens like a batch of Tater Tots for supper. So even if 99% of the people who take Cymbalta find it effective and benefit from great relief, any random internet search will tend to be skewered in favor of the 1% that became rabidly addicted homicidal ax murderers with a keyboard. That doesn't necessarily mean that I will.
But just in case I do, I've decided to start keeping The Cymbalta Diaries, so I can monitor my reactions to the drug. At least if I flip out and start deep frying people's organs, my beloved children may be able to sell the screen rights to these diaries and retire somewhere in the south of France where nobody knows who the hell their crazy mother was.
So, without further ado, I present to you: The Cymbalta Diaries, Day 1.
7:30: Woke up with severe pain and buzzing in both hands and arms. Feet felt like bursting into flames when they touched the floor. Nevertheless my mood was vaguely cheerful and spacy as usual. Pain subsided somewhat after a few minutes of puttering with the animals and boiling a pot of tea.
7:50: Made up a batch of super healthy high protein high fiber blueberry muffins with flax oil for breakfast.
8:15: Took first Cymbalta capsule, 30 mg., with green jasmine tea.
8:20: Decapitated three neighbors and gained 45 pounds.
8:21: Haha, not really. Actually I just took the muffins out of the oven. They turned out pretty good.
8:22: No change.
10:15: Nada. Have another muffin?
11:30: Ho hum.
1:00: Lalalala, I'm waaaaiting.
2:15: Ok, maybe the pain is a little less. Or maybe not. I can't really tell. Nothing dramatic. But also no sweating, no vomiting, no mayhem. No noticable mood changes, still vaguely cheerful and spacy. Maybe it takes time to build up or something. I'll report back later. But if you don't hear from me, be sure to watch the 6:00 news tonight. Just in case.
Time again for the next installation of our gripping Monday Morning Hair Watch:
February 5th, 2007
March 26th: Thick on top
Thick around the swirl
But still ridiculously thin and sparse and translucent around the edges...
Rendering it pretty much invisible from more than 18 inches away. Hell.
In other exciting post-cancer news:
I have an appointment to have my hideous port removed on May 1st!
I also have a new prescription for Cymbalta (duloxetine HCL) which is supposed to help with the pain from the peripheral neuropathy. If this doesn't work, I may need to go see a neurologist as the pain seems to be getting progessively worse instead of better.
And I'm very sad and worried about my beloved brainhell, who is not doing well these days. Please send your best thoughts to him and his family.
I love this time of year. It'll be another month before the roses are in full bloom, but a few early birds are already poking their noses out, and everything's so green and full of life!
I'll never forget last August, when I thought I had advanced lung cancer and at most three months to live. One day a bulb catalog arrived in the mail, and I burst into tears, believing I would never live to see another spring with its tulips and hyacinths and daffodils. But: it's spring again, and here I am.
This is my last spring in this house though, and I'm spending as much time in the yard as I possibly can, enjoying every warm lovely sweet smelling second of it.
Wild Wisteria blooming in the trees.
Wild Wisteria up close.
Azaleas gone nutzo.
Peach Pelargonium in a blue pot.
Sweet demure tea rose 'Duchesse de Brabant'
Drama queen Cajun Hibiscus steals the show from the sweet demure tea roses.
Delicate Rhaphiolepis indica, obviously in the same family as wild roses, blackberries, and apple trees.
Noisette climbing rose 'Desprez a Fleur Jeaune'
A huge white 'Lady Banks' rose climbs into an old tree and arches gracefully over the driveway. My biggest fear is that some bozo with a tall honkin' SUV will buy the house and whack Lady Banks all the way down so she won't touch his precious gas guzzler.
Tea rose 'Duchesse du Brabant' again.
The beds are filling in with Bluebonnets, red Pentas, and pink Diascia.
Bluebonnets with dwarf Coreopsis.
Phallic things are emerging in the front beds.
Purple house with white 'Lady Banks' in the foreground.
"As I spoke to her before the operation to get informed consent, the patient ran her fingers across her short hair, only now starting to grow back after her having completed her chemotherapy a few weeks ago. As I've found with many women whose hair is just starting to reappear, like the soft coat of a short-haired puppy, she looked good--better than I remembered her with hair. Indeed, it never ceases to amaze me how many women can look so good at this point in their course, where they have what looks like a Marine-style buzzcut. Maybe it's just me, or maybe it's because women who reach this stage almost invariably seem so full of life; they've faced down death and their worst fears, and come out intact, if not unscathed. And this time, the patient was elated at having this procedure. Indeed, she was practically giddy, happier than I had ever seen her. She had a glow that, if I believed in Reiki, might have interpreted as a her life energy becoming visible."
The giddy post-chemo glow
And I also love what he says about ports. This is so true:
"It's easy for a surgeon to forget that the insertion and removal of a port represent two major milestones in the course of a patient's cancer treatment. The insertion of a port often represents, even more than the scars from surgery, a daily reminder of the patient's disease, and the insertion of that port represents a long-term alteration of the body necessitated by her disease. It's a constant reminder that life is not normal, a cold, metallic foreign body implanted in her body. Every time a woman feels that quarter-sized metal port under the skin, it's telling her that her life is not what it was; she is not the same as she was; she is not "normal." Even though the implanted port may not even be noticeable even if she wears a wide-necked shirt, other than the small scar left from its implantation, the patient knows its there. Sometimes this provokes complaints that one wouldn't have expected. I've had patients complain that they felt the port while trying to golf, to ride a bike, or even do yoga, and it bothered them. I've had patients who normally sleep on their stomachs complain that they can't do so anymore because they end up lying on the port."
So I went down to the hospital Tuesday to have the hideous thing flushed with saline. I'm supposed to have this procedure every 4 weeks to prevent clotting. While I was there, I stopped by 5 North to say hello to the chemo nurses. The conversation went something like this:
Me: Hey, Mike! I have a port question. Are you a port authority? [nyuk nyuk nyuk]
Mike: [totally oblivious to my hilarity] It depends. What's the question?
Me: Is it safe to do heavy lifting with a port?
Mike: How heavy?
Me: Heavy enough to win trophies, to break records, to get my picture on the front page of the paper.
Mike: Oh you mean lifting weights, like at the gym? Well, it's probably ok if you're just trying to get toned.
Me: "Toned"?[1/2 inch long hair bursts into flames] Gaaaah!!! No! No! Anything but "toned"!
Mike: Ok, it's probably not good to do really heavy lifting, like competitive power lifting heavy.
Me: Yeah, that's what I'm talking about, competitive power lifting heavy. I want to get back my 145 pound bench press. But it kind of hurts when I try to go more than about 60 pounds right now.
Mike: Oh no. You should have the port taken out.
Me: Now? I was supposed to leave it in for two years, for Rituxan maintenance. Can I just have that straight into a vein?
So can you believe it? I'm going to have my port removed! I'm going to be able to wear spaghetti straps this summer! No more huge freaky looking doorbell poking out of my chest wall!
Well, that's assuming I can actually get through to the surgery department at Our Lady of the Damned. Which is about as easy as getting through to the White House. They have a pretty rigid "don't call us, we'll call you" policy, so it's impossible to get through on the phone. I'm going to drive down today and try to make an appointment in person. If that doesn't work, I'll have no option except to go the emergency room and wait 12 hours to see a newborn resident who has no idea what on earth I'm talking about, but who may, after several hours of me shrieking, sobbing, and chaining myself to his lab coat while setting my eyebrows on fire, be persuaded to put in for an appointment.
As Orac says:
"Indeed, removing a port is so easy that it's equally easy to forget what this means to the patient. It means an end to the chemotherapy. It means that the most intense, painful stage of treatment is over. It means reversal of at least one bodily alteration. It promises the hope of a return of what was taken away by the cancer. To us surgeons, it's a simple procedure, even a nuisance sometimes when things are busy and we're being asked to do a dozen procedures and being pulled in a million different directions....but whatever happens, whatever the future holds in store for her, removal of her port was still an important milestone. It gave her her life back."
Stand back! Here it comes again, the Monday Hair Report that's so damn predictable you can set your watch by it. Behold ye mine head, ye voyeurs, and marvel at mine progress:
Ahaha, I almost had you there, didn't I. Ok, seriously, because I know you simply can't exhale until you've seen today's astounding hair status, here's the truth. It's actually almost looking pretty good:
Every week there's a little less shiny pink scalp visible through the thickening forest.
The cupie doll ridge reaches for the sky.
Still doesn't look like much from a distance.
But I'll tell you what. When I went out hatless this weekend, I ran into several acquaintances who didn't know I'd been sick, and they just assumed I had adopted this radical new look on purpose. I even got a couple of compliments about it that seemed sincere.
I figure two more weeks and Annie Lennox will be calling me up, demanding her hair back. Woot!
One day you're walking along, innocently minding your own business, when out of the blue you're randomly selected from the crowd to be kidnapped and brutally tortured by a gang of sadistic sociopathic terrorists.
These evil thugs hold you hostage and threaten to kill you. They torture you, they humiliate you, they isolate you. They take all your money, they lock you inside your own house and tell you they'll kill you if you try to leave. They deprive you of food and sleep; they cut you and stab you and poison you until you're so sick and weak you can barely stand up. They mutilate you and disfigure you until your own family wouldn't recognize you. They do this again and again, over and over, for six months, constantly threatening to kill you if you refuse to submit to their torture. They threaten to kill you if you don't have a "positive attitude." Though of course if the whim strikes them, they're always reminding you, they might kill you anyway, no matter what you do, just for the hell of it.
And then suddenly one day they're bored with torturing you and decide to leave you alone. "But don't be so sure we're really finished with you," they warn with an evil laugh as they're slithering out the door. "Because there's a damn good chance we'll come back for you. It could be any time: maybe tomorrow, maybe next month, maybe a year from now. Never forget: we've got your number, lady, and we know where you live. Nobody can stop us if we decide we want you again, nobody."
They slam the door and they're gone. Silence. You weep with relief. You still feel weak, your body is wracked with constant pain and fatigue, you look terrible, you're forever branded with the social stigma of having been assaulted and violated, but at least, thank the Universe, you're alive!
You struggle to pull yourself back up on your feet and set about trying to resume your normal life. Sometimes you feel giddy with happiness and gratitude, but then other times you feel inexplicably empty and depressed. You try to go about your business, but you can't seem to concentrate. You can't focus on what it is you're supposed to be doing. Your mind is in a fog. The future seems uncertain, you're nervous and jumpy. Every sudden noise might be them, coming back to get you.
"Relax!" your friends tell you. "It's over! Don't be so paranoid. Sure, they might come back some day, but then anybody might get hit by a bus on the way to work tomorrow. You can't live in constant fear. Forget about it, and just live one day at a time."
You try. You really do. And sometimes you manage. You try to go out and do "normal" things, the things you used to enjoy. People stare at you when you go out in public, but you put on a brave smile. You try to engage in small talk. You struggle to keep up. You try to stay active. It's been two months now, your energy and stamina should be bouncing back, but you're still so tired. The fatigue tackles you without warning and grinds your soul into the ground. You have crying spells that just won't stop. The poison doesn't seem to be leaving your body as fast as it should. You wonder if it ever will. Your hands and wrists and feet still hurt unbearably where the nerves were damaged, but you don't want to complain.
Because frankly, people are sick of hearing you whine. The novelty of hearing about your horrible experience has worn off and now they're ready to move on. Your support network drifts away. Come on, you tell yourself, act right for gods sake! You're sick of feeling sorry for your self, and you want to move on too. What the hell is wrong with me, you wonder. Why can't I get over it and snap out of it and have my normal life back again?
And what the hell is normal anyway? You sit and stare at the wall for two hours, and you honestly don't have any idea.
Trying to sell my house is turning out to be a full-time job. When I sold my loft in Berkeley seven years ago, it was simple: hire the Merry Maids to give it a once over; list the place on Thursday; go out of town for the weekend; realtor holds open house Saturday and Sunday; take multiple offers Monday night; accept the highest offer which was 30% above asking price, and voila! A quick and painless procedure. But down here, the average time to sell a house is three to six months.
I mean, hell. Do you have any idea what it's like trying to keep your house perfectly clean 24/7, always ready to show at a moment's notice, for three to six goddamn months???
While I am no domestic goddess by a long shot, I do tend to drift a bit towards the Felix end of the tidiness spectrum. But holy mother of crap. It's no picnic in the park trying to keep this big old funky place blindingly spotless, day after day after long relentless day. I'm astonished to realize what a horrendous mess two tiny dogs and I can make, living here all by ourselves.
It's bad enough that we work in the garden for a few hours every day and track in all kinds of mud and leaves and grass and other miscellaneous gradoo. But we also sleep in the bed, take showers, change clothes, cook ourselves a meal or two, bring in the mail. And before we know it the damn place is a pig sty. So when a realtor suddenly calls to give us the requisite two hour notice before showing the house to interested gawkers, we have to scurry around like mad primping and preening and polishing every surface, trying to make it look like nobody except maybe Martha Stewart's OCD housekeeper lives here.
But then comes the fun part, the part of selling the house that is a picnic in the park. Literally. Whenever the realtors want to come by with gawkers in tow, the girls and I have to vacate the premises. Luckily for us, there's a beautiful big city park just four blocks away. It's several hundred acres so we can stroll around for an hour and never sniff the same puddle of pee twice.
So here's a photodocumentary of how we spent this lovely sunny spring morning, exiled in the neighborhood park while strangers tramped through our rooms and peered into our closets.
This is the nearby city park. Lots of open space for walkies, as well as several tennis courts, little league diamonds, rec centers, and playgrounds. Unfortunately we forgot our racquets today.
This shady live oak is a great spot for one of our favorite sports, squirrel watching.
The bushes are full of rabbits and squirrels, but we know if we try to lunge off after them we'll be sentenced to six weeks at boot camp with the dreaded Dog Whisperer.
We love to mill around the picnic tables where other people may have tossed their nasty greasy old fried chicken bones.
Those of us who have hair enjoy the breeze in it.
Some of us are brave enough to try the slide; others are scared shitless.
Some of us enjoy the swings; others would rather be boiled alive or devoured by the evil vaccum cleaner.
We're not sure if this is an alien space craft, or if we've wandered into the middle of a Brobdingnagian golf course. Whatever it is, we like to lift our legs on it.
Spring in the park is quite pleasant, but we hope to hell somebody buys this place before it gets too hot for us to spend an hour outside without dying. Which will be in about one more month.
For sale: One big old purple house with wrap-around veranda and eight million rose bushes that are just about to bloom.
A single woman in my fifties, in debt, no income, no health insurance, and then that grapefruit-sized tumor wedged between my lungs turns out to be a malignant high-grade highly aggressive stage IV lymphoma. How much worse can it get? Bwahahaha! Stay tuned and find out.