Reconnaissance Fair

Today was my second pre-radiation appointment (the first, a week ago Friday). The initial appointment was a meet-and-greet with my radiation oncologist and her trusty resident sidekick. Today's was termed a "simulation", where they sculpted me into position for treatment. For the next ten days, the scientist eggheads are busy calculating how much nuking I can survive while still killing the little cancer guys. Then there's one more pre-appointment appointment, next Thursday, before I start radiation on August 11.

I will have 20 days of radiation, daily Monday through Friday, which works out to four weeks...finishing just in time for my epic September road trip. (More on that later.) Each appointment will be relatively quick, about 10-15 minutes of radiation plus prep time on either side (undressing, dressing, check-in, etc.). The real time-sucker is transportation...walking to the shuttle, riding the shuttle, walking from the hospital to the commuter train, commuter train to the East Bay, shuttle to work. They take appointments starting at 7 am, but they're first-come-first-serve, so while I'll try to schedule early mornings so I can get to work later if I need to, it's a bit of a crapshoot. I definitely won't be schlepping to work every day - my goal is a couple days a week, with remote logon from home always an option.

I won't glow, the radiation won't be contagious if you get too close, and most disappointingly, I won't be able to reheat food by holding it near my upper chest. But there is good news: while I'll need to keep my radiated areas covered, I can catch rays elsewhere on my body - no need to fill my closet with burkhas. And I won't have to choke down any medications before, during, or after the treatment. But a trip to the dentist is in order - they might end up nuking one or more of my salivary glands. As I well know from my dental office days, lack of saliva leads oh-so-rapidly to rampant gumline cavities. Hopefully gallons of tasty fluoride will stave off that possibility.

So enough with the preliminaries; let's get to today. Today I went to the basement of Mt. Zion, a much nicer UCSF facility, where all of my radiation treatments will take place. I stripped from the waist up, donned a monstrously large hospital gown and robe (basically a second layer of hospital gown put on opposite from the first one), and sat in increasingly colder rooms to await my simulation appointment.

First, I met the two radiation techs who laid me down on a long thin hard table, placed my legs on a cushioned, form-fitting knee lift, and had me scoot into a hard clear plastic neck lift. Very uncomfortable, and the rock-hard table didn't help. With my knees up and my neck corked around the plastic neckrest, my entire body weight rested on my coccyx, that small and entirely uncushioned tailbone. I stared up at a strange screen with a green laser outline of my head and shoulders on top of my shadowy, reflected form. A green laser cross-hair bisected my face. I felt like I was on the wrong end of range target practice.
The thin bench-like table slid back and forth under me as they checked my position. They kept stopping and torquing my torso left and right, nudging me this way and that to get me precisely positioned. It was quite uncomfortable, as I was strictly cautioned against moving in any way, so when they tweaked my spine one way and then the other, I could do nothing but throb in pain from the cricks in my neck and back.

Eventually they had me where they wanted me, and they stretched a warm, sticky, wet netting over my face and shoulders, locking it down around me and pressing it to my face. This was to create a mold which they will use to get me in just the right reproducible place every day for my treatments. The mask was more hole than string, but it still felt strange and claustrophobic as it dried to my skin. My doctor came in to argue for a more chin-lifted position (so as to better avoid those pesky salivary glands) and the techs pushed my head this way and that to try and meet her expectations. I wiggled into the perfect position for her, by using a much lower neck lift and tilting my head back, and it was reasonably comfortable as well, but the techs insisted on the higher neck lift - the smaller one (and the awkward position) resulted in a small gap twixt neck and lift. So we went back to the higher one and they snapped down the face mask - MUCH tighter than before. My chin and nose were being squeezed down through my face. I could barely move my lips and facial muscles to squeak out, "It's very tight!"

The techs sighed to each other, "Oh, we never should have removed the mask while it was still drying - it shrinks." "No, it's MUCH tighter!" I insisted. They frittered around for a few moments until finally one of the techs realized she'd put an extra layer underneath the neck lift, raising it even higher and thus tightening my face mask. Ahhhhh. Much better.

They marked up my face and sternum with permanent marker (which washed off later into a strange purple tinge), and then decorated my mask with masking tape and markers. You think a quick whiff of Sharpies smells bad, try marking them on your face...on a surface that stays right by your nose, with the chemicals lingering just below your nostrils. All of this created a nice box on my body for the radiation to zap.

That finished at last, I was passed next door for a CT scan. Much less involved than the one 10 days ago, this was simply to test the "box" and the positioning to make sure they'd zap what they intended. And other than the condescending CT tech who spoke very SLOWLY and LOUDLY to ensure I knew EXACTLY what she was SAYING and who figured dismissively that I either had to be a history buff (not quite) or a student (it's been over eight years since I was last in school, lady) to be reading a well-worn copy of Churchill's history of WWII while I waited for her, it was a rather pleasant visit, all things considered.

A few last notes. I took a post-chemo blood test last Wednesday, and although my radiation doctor was deeply disturbed by my low hemoglobin counts...my oncologist was excited. "No, that's a good number for her," he told my taken-aback radiologist. "They're going up."

And also today, I finally got the results of my post-chemo PET/CT scan taken a week ago Friday. With the important caveat that PET/CT only picks up cancer cells larger than a millimeter or two - and those little critters can be microscopic, hence the need for "clean-up" radiation - the scan showed me completely cancer-free.

Hooray for the chemo.

Cancer couture

Going through chemo, you develop some interesting fashion habits. And no, I'm not referring to the often ridiculous head coverings marketed to us follicularly challenged females. (Although I did learn how to tie a turban.)

To start with, there's the layered look. A brisk walk to the shuttle in the morning, a chilly seat during infusion (despite the warm-from-the-dryer crochet-style blankets they drape you in), a bone-chillingly windy wait atop Mt. Parnassus for the bus, and a sunny, hot walk back home - not to mention an internal body temperature thrown haywire by the drugs - these days of personal microclimates call for a flexible outfit.

And, your clothes need to be accessible. By that, I mean that tubes, needles, and deadly drugs have to make their way through your precious duds without ruining them. So the layers have to be carefully planned. A long-sleeved Henley for the bottom layer? Not so much - can't poke a needle in your arm. Any type of t-shirt collar? Nope - can't get to the port without stretching the neck of the shirt. Sports bra? No way - puts tons of pressure on the port (as well as covering it up).

And you realize, on those mornings off work when you lay in bed trying desperately to sit up and realizing that flexing your abs takes more strength than you can muster, that everything you wear has to be washed, and dried, and folded, and ironed. So you gravitate toward the easy-care items that hopefully still that fit the aforementioned criteria. A button-down shirt is great for accessibility, but scores abysmally low on the "maintenance" scale (wrinkle city). Long-sleeve knit undershirts are warm, low-maintenance, and great for layering...but not accessible in the slightest.

Head coverings - marketed as the great care and concern of cancerously bald women - are, by far, the least complicated part of my dressing game. I haven't desired to venture into the complicated and often pricey world of wigs. On the occasion I do wear a hat, I've stuck to my existing, limited millinery - if it's not part of a uniform, it usually doesn't get worn. An old nautical standby, my black knit cap is good for our typical summer days here - windy, overcast, foggy, and cold.

But all these are rarely worn. Pretty much my standard headgear is an old bandanna, black or blue, tied around my head. The uninformed passersby can't even tell for sure if I'm bald - maybe I'm just being uber-conservative by covering my head. The bandanna is also a highly adaptable, multi-use accessory. I can pull it down over my eyes to catch a quick fatigue-induced catnap. Or clutch it during a moment of pain, or mop up sweat occasioned by an overtaxed heart and lungs. The best part, though, is that particularly with sunglasses, it looks totally badass. Well, maybe a little too badass. I thought my best friend's trip to the principal's office in high school for wearing her ever-so-modest "kerchief" was an isolated and silly event (apparently it was "gang apparel"), until I was corralled this weekend for special airport screening for daring to wear my terrorist bandanna while trying to fly. (Good thing I didn't try out the Chemo Chicks' cancer turban.)

In truth, I go bald a lot. Nothing is quite as comfortable or as liberating as a freshly shaved, baby-smooth pate. At work, I have to go bald if I'm not outside, which induces its fair amount of confusion among personnel not in on the game. (Although, to be fair, they're just as gender-confused, if not more so, to run into the ball-cap-clad me.) In fact, outside of uniform constraints, I really only cover up for basically one of two reasons: (a) to keep my glaringly white head from sunburning brutally; or (b) to keep other people from being embarrassed. Yep. Head covered, no one gives me a second look; but bald, I'm stared at, or worse - not stared at, that uncomfortable certainty that people are trying very hard not to look at you.

I am curious to see the peculiar fashion fetishes that radiation treatment may induce.

Pills-Be-Gone

Yesterday, one week after finishing my chemo regimen, I at last could shut down the pill factory. The prednisone I bid a welcome adieu to last week (a bit earlier than scheduled, mainly because the long-drawn-out withdrawal process was too unbearable to stretch out any further), but the rest of the supportive medications I still swallowed on a twice-daily basis. No longer.

My body, she rejoiceth that I'm no longer pumping poisons into her. (I refer more to the chemo than the supportive drugs, although the latter has also affected me adversely, though to a lesser extent.) The disorienting dizziness returned not long after last week's emergency transfusion, but this week, my body's back to producing its own red and white blood cells, platelets, and hemoglobin. It's amazing how much easier it is to climb hills, climb stairs, and even climb out of bed when your heart has some blood to pump.

Ever so slowly, I am starting to regain my sense of taste. Water still tastes funny, but less so; and more of the foods I eat actually taste somewhat like what I remember. It's somewhat like a picture gradually coming into focus, which brings me to another waning side effect: the prednisone did wonders at wrecking my vision, but now that I'm off it, my eyesight's gradually returning to the only slightly myopic.

The nausea's mostly gone (only to return with radiation), but I still don't have much of an appetite. I'm sure that will change once I start working out more - now that my immune system isn't suppressed, I won't be so scared to hit the germ-lurking gym; and it's a lot easier to jog or run instead of walk when your heart and lungs have some function. Hair loss and fatigue will take longer to remediate...probably a month to three months, and the fatigue at least will only increase with the month of radiation treatments. The nurses said it could take up to a year to feel fully free of the symptoms, but I feel a lot better already. Maybe some of it's psychological.

There have been many developments over the past week, which I'll share shortly. I had a PET/CT scan last Friday, just after I met with my radiation doctor. I have another pre-radiation appointment this coming Tuesday, at which I'm hoping to find out the scan results. I also ran a blood test two days ago, the results of which I'll get on Monday - it should show that my body's starting to make its own blood again, unmolested by the chemo drugs at last. And, I got good news from my detailer about job prospects over the next year. More on all of this in the near future...stay tuned.

I have this theory, that if you cut off all her hair she'd look like a British man

Last Thursday, as I was standing bored, waiting to check in for my last and final chemo appointment, the youngish woman sitting down in front of me, checking in, caught my attention.

Normally I don't give all that much concern to the other patients, particularly in the check-in area, where patient privacy is paramount. So it was actually her perky, me-me-me voice that first caught my ear. She was about my age, give or take, and looked like she'd just stopped by from jogging the dogs through her upscale neighborhood. Short, straight, highlighted hair pulled back in a ponytail. Name-brand track jacket, cropped yoga pants, trendy running shoes. Makeup carefully applied to look like it wasn't there. French-manicured nails around a tall cup of fancy-ccino. She was talking hurriedly, excitedly, caffeinated-and-ready-to-go. She had just gotten married to this awesome guy. They'd just moved into this great new house. Her life was full of Activity, of People, Places, and Events. She could barely get through all 40-odd check-yes-or-no boxes on the Symptoms Form before bubbling over with something else she was busy Doing in her Amazing Life.

The overworked receptionist just smiled wanly at her, slapped the roll of patient-identification labels onto the sheaf of forms, and pointed her to the lab, for vitals and bloodwork. Next!

I couldn't help but feel sorry, somewhere, for that woman. Newly married, and young, and facing potential infertility. Attractive, and losing her looks, at least for a while. Fit and healthy, and being unable to work out much for weeks, heart and lungs damaged by the drugs, scared of the germy gyms.

But I also found myself desperately squelching a smug satisfaction desperately reeking of those teenage "Mean Girls" days. You think you're hot now, huh? Mmm-hmm...I want to see what you look like in eight weeks, b****!!

The gift of life

Thursday, my blood counts were scary-low. So low, in fact, that I needed to have a blood transfusion. I was terrified, but the nurse practitioner assured me that the blood supply was very safe...except for things like the newest strain of hepatitis, "E", for which they don't have a screen yet. Thus, the sheaf of release forms thrust at me.

I've been unable to donate blood my whole adult life, since I lived the better part of three years, starting at 17, in Europe, during foot-and-mouth disease. (Though it's rather ironic - I've been a vegetarian for some 15 years and there's no possible way I could have been infected.) But I'd like to thank all those who do donate, since I was dependent on two pints of someone else's Thursday.

I got my very last chemo infusion first, while they took a couple hours to find me a perfect blood match, then make triple sure (a) the blood was clean and screened; and (b) the blood really *did* match mine. Of course, they don't have screens for all the possible diseases, and there's always a possibility my blood's antibodies will try to fight off the foreign blood cells. It's still dangerous, but I've been lucky, I made it all the way to the last week on my own blood-power. The nurse practitioner said most patients on Stanford V usually have to have at least two transfusions.

All of the feeder lines between the blood bag on the IV stand and my port were quite long, and watching the blood creep ever-so-slowly along them, gradually turning the clear tubes red, was quite unnerving. Like climbing up-up-up on a tall rollercoaster. You look down: holy crumb, we're up high...you look ahead: and we've got a hell of a long way left to climb!

But nothing untoward happened. It was a very long day - 8 hours at the hospital plus an hour or so commute each way...and the shuttle drivers were on strike, so it took a bit longer to get to and from. I have to say though, it was terrific not to feel blackout dizzy every time I stood up; or for my heart to pound painfully with every flight of stairs, no matter how small.

So the chemo is over. I read the other day in an AP article that Sen. Arlen Specter, who was diagnosed three years ago with Stage IV Hogkins (the most advanced stage, with only a 50% survival rate), and went through chemo and radiation then; whose cancer went into remission only to return this spring, and who just finished up three more months this summer of chemo, has been putting in full days of work throughout. He was about to celebrate by drinking a martini with friends and family, before he started radiation. Now I don't necessarily support his politics, but this guy - nearly 80 - is one tough nut. My hat's off to you, sir.

Pursuit of Busyness

NOT, of course, that I've been pursuing the breathless life. Rather, that it's been chasing after me with relentless fervor.

At work, I'm tremendously short-staffed: we'd be overwhelmed even under our normal workload. But on top of that, we face (a) losing a huge chunk of our budget and our personnel in a month or two, with no decrease in the level of security or services we provide; (b) a large security capital-improvement project; (c) several ships coming and going ("Port Services", which my division provides); and (d) the commissioning of the Coast Guard's first National Security Cutter, for which I'm providing security. We're expecting over 2000 guests, some very high-level. Oh, and I'm scrambling to update a couple of manuals before our commanding officer rotates in a few weeks.

So at work, where I "only" work three days a week, I'm constantly tied up in meetings, or putting out fires, or doing the work of the petty officers I don't have, working from around 7 or 7:30 am to around 5 pm daily. That doesn't count the commute, which including walk, train, and shuttle, clocks in at around an hour each way. At a meeting yesterday, another attendee asked if I could meet up with them today. I said, "Sorry, I have chemo." They paused, then asked, "How about Friday?"

Now normally, Friday is a recovery day. Where I don't work. But this Friday, I have two appointments - with the radiation doctor to check in, and then for my PET/CT scan (hopefully cancer-free!). Yeah...like I'm going to go running off to work to clock in somewhere in the middle of all that. Then the person asked, "Is there anything I can do to help out?" I felt like responding, "Yeah, don't task me with anything!" I ended up having to take a few projects home, where I was up working for about 3 or 4 hours after I got home Wednesday night, until 10:30 pm.

It's been impossible to keep up with my mail, my voicemail, my emails, my laundry or ironing, or even trying to eat the food in the fridge so it doesn't spoil. (It doesn't help that I either feel sick, or the food tastes waxy, or "off", or I just have no appetite. On the other hand, it makes for a very effective weight-loss program.)

And, I just found out yesterday that my roommate's moving out. She loves sharing a place with me, but she's between jobs and found another place nearby for $500 less. I told her she had to manage the whole process of finding someone new - I'd just make the final selection. So we have an open house this Saturday.

All of this would, of course, be made much easier if I weren't losing hours each day to feeling totally terrible. For example, Monday, where upon my arrival at work I had to curl up on my little (very hard and uncomfortable, prison-industries) sofa in my office, still in street clothes, clutching my knees and praying hard that I wouldn't puke. For an hour. Then it took another hour in the bathroom in my office before I was finally ready to face the world.

I'd be a hell of a lot more ready to take on the world if I weren't sick at the same time. Yeah. That was a bit of wry humor...

The wall

Runners talk about hitting "The Wall". Most of the race is behind you, but you're still too far to sprint to the finish line. Your body's done for, and it's up to your mind to talk you through to the end. That's the theory behind training for longer distances than you actually race.

Usually I'm not competitive or under-trained enough for it to happen, but I've hit the wall a couple of times in road races. The first was just a 5K, a distance I ran almost daily at the gym. But gyms are air-conditioned, and after running the first kilometer at my normal pace on a hot, humid day outside, I nearly collapsed. Even walking the rest of the distance, drinking cold water, and sitting in front of a fan afterward didn't prevent a mild case of heat stroke.

The second time was a bit more memorable. Having successfully completed a leisurely marathon six months earlier - and feeling great at the finish line - I decided a half-marathon at a faster pace was well within my reach. I trained carefully, indoors and out, for several weeks.

Then, Katrina hit.

For a week, I worked 18-hour days, was woken from fitful sleep every couple hours each night, had no time to exercise, subsisted only on a large daily bottle of orange juice (trying desperately not to get sick), and was under tremendous stress. Sunday, the day of the half-marathon, was my first day off.

The first 10 or so miles went great. It was wonderful to be outside, running, free of stress and job pressures, able to think through some of the issues I'd faced, nothing but me and the pavement and the sky and a rock band at every mile marker. I was way ahead of my pace and feeling fantastic.

Then I hit the wall. My body just stopped. No problem, I told myself, I'm ahead of schedule, I can walk. So I fast-walked one mile, two miles...I kept nervously checking my watch, but every time I tried to step up even to a jog, my body rebelled instantly. At last I knew that if I wanted to make my goal time, I'd have to run the last bit. I was on the boardwalk. The finish line was in sight. I started to run. My body screamed at me. I kept going. I felt terrible. Never has a mile seemed so long. Even a few steps from the finish line, I wasn't sure I'd make it.

There's a great picture of me clutching my stomach and my face (to keep from puking on the volunteers) as I cross the finish line. Just under my goal time, by the way. (The clock in the background is misleading - we had staggered "corral" start times.)

This week, in a much different context, my body hit the wall. Tuesday in particular, on the way home from work, I felt so sick I sat down a couple times right where I was - a city street, a BART station - and clutched my knees and clenched my teeth until the waves of nausea at last passed and I could stand up without hurling. I wasn't sure I'd make it home. All week I've done little more than sleep, work, and go to the hospital. My last shreds of appetite have long since faded away.

I'm still going, and I'm getting close...one week left, then the radiation starting soon afterward...but I can't guarantee I'm going to look pretty crossing the finish line.

The Routine

Every Thursday (and one Friday) for the past several weeks, my "work day" has consisted of receiving chemo treatment. The appointment times and specific drugs administered may vary, but the overall routine remains remarkably the same.

I wake up and usually by this point in the week, I'm pretty hungry - my appetite has returned to some degree. But, I don't want to eat too much, because the chemo drugs will mess with my stomach. So I'm careful to stick to a bagel or a fruit-and-juice smoothie instead of scarfing down a large or spicy meal.

Before I leave the house, I put topical anesthetic on a special clear plastic bandage and put it over my port. This helps numb the area they're going to poke later. I pack my backpack with a stress squeeze ball (for when they're poking me), my iPod (fully charged), and plenty of reading material (there is a LOT of waiting time). Even getting dressed takes some special concern: the port (just below my right clavicle) needs to be accessible, so a button-down shirt or a tank top is best, to avoid stretching the neck of a t-shirt. And Parnassus is always terrifically cold and windy, no matter how hot or sunny the city is, so a sweatshirt and hat go in the backpack too.

It's about a 30-minute walk down to the UCSF shuttle bus. Sure, I could take light rail, but it wouldn't cut that much time off, and the exercise feels good. It's another 20- or 30-minute shuttle ride up the hill to Parnassus. At the hospital, after battling an overtaxed elevator system crowded with patients, doctors, nurses, techs, wheelchairs, well-wishers, etc., and waiting in line, I check in with an overworked oncology receptionist who luckily, by now, recognizes me. She slaps sheets of pre-printed personalized labels on a thick stack of papers while I fill out a "how're ya doin'?" form. This form lists a few dozen symptoms, categorized by body system (Endocrine, Neurological, etc.) and you check off "Yes" or "No" if you've experienced them in the past week. I swear nobody looks at this form but I duly check down all the boxes.

They write down your arrival and appointment times and give you two stacks of papers. One stack goes in the "vitals" box; the other goes in the blood draw box. Most patients get their blood drawn in the cattle-car room...but luckily, I have a port, so an RN has to draw my blood in private.

You then take a seat in a long and fairly crowded waiting room next to folks who are, for the most part, much older and frailer than you. They eye you with suspicion as you, bandanna'ed and sunglassed, fire up your iPod and start reading something fairly thick and heavy like a Galbraith economics book or Churchill's history of WWII.

Every few minutes, the techs emerge to shout out somebody's incredibly mangled name. It's often hard to hear, or to respond quickly, because of the long, narrow, and around-the-corner nature of the waiting area. So a lot of repetitive shouting ensues. These techs take your vitals, which at UCSF consists of your height and weight (both metric), your blood pressure and pulse, your blood oxygen (which, for me, has always suspiciously remained the exact same number), and a wrist measurement. Then you are discharged back into the waiting area until your blood is drawn. Sometimes the blood draw happens first, which is rather amusing to me, because the vitals techs aren't aware, and they shout and shout and shout for you while you're just a few steps away with lines sticking in you, unable to respond.

The RN blood draw is a ritual in itself. There is a special tray they bring in, crowded with all manner of needles, gloves, bandages, etc. They open up and spread out several of these packages, one of which has two gloves neatly folded. They remove the plastic bandage and wipe off any remaining topical anesthetic, then swab down the site with a disinfectant. They hook up the needle and the line and poke it into the port. This hurts, some times more than others. They test the blood return (it acts like a vacuum to suck your blood out), flush you with saline (which always makes your shoulder really cold), and take three vials of blood, then they leave the line in and surround the punctured area with gauze and tape.

Then you wait back in the seating area for your blood counts. It can take anywhere from thirty minutes to an hour. If it's not too foggy, which is often, there is a terrific panoramic view of the entire Bay Area from the fifth-floor oncology seating area.

Once you have the lab results, you meet with your NP. She discusses what's high or low and what actions need to be taken - shots to increase red or white blood cell production, blood transfusion, delaying treatment by a week, or going ahead with treatment. Luckily, I've been able to avoid transfusions and delays, although my blood counts have sometimes been dangerously low. (One nurse said, You probably know all your blood cells on a first-name basis by now...) This is also the opportunity to ask the NP any questions about your treatment, which I've done a lot of in the past couple weeks.

The NP then gives the pharmacy the go-ahead for your treatment, and you are ushered into either a private or shared, chair or bed, treatment room while you wait for the drugs to be concocted. You receive your "pre-meds" and the nurses offer you a selection of snacks and beverages to accompany them (I take water, on the rocks). More waiting ensues.

A lot of the drugs have short half-lives or other restrictions, so it's very important to mix and deliver them right on time. Hence the waiting. At last, the bags arrive from the pharmacy, menacingly marked with big yellow-and-black poison stickers. Then the nurses use a two-person integrity process to verify that the right person is receiving the right drugs. You have to state your name and birthday, which they compare to the drugs and paperwork. They use a calculator to double-check you are receiving the right dosage for your height and weight. And they read off the labels on the drugs while showing them to you, so you know you're receiving the right drug and dose for the right person.

Some of the drugs are administered by drip irrigation (i.e. the IV), while others require the nurse to slowly inject them via an enormous syringe. Regardless, the drugs are hooked up to one part of your line, and a saline solution flushes you from a second line. If the nurses are manually injecting you, they'll sit and talk to you, which is a pleasant social distraction, but if they're drip-irrigating you then they set the timer, equip you with a "ring-for-service" bell, and leave the room. Some drugs take a LONG time to flow into your system...as much as an hour, which passes very slowly. When the drugs run out, a very annoying timer starts beeping with increasing noise until finally a nurse notices and comes to shut off the drug and start the straight saline flush.

When it's all done, the nurses take out your line, band-aid your port, and pack you off. You might get a shot at this point if your blood counts are low - a quick and sharp poke in the back of your arm. (They offer the stomach as an alternative, but who wants a big needle poking them in the stomach?) And then the commute begins in reverse, usually after a quick stop by the restroom (a LOT of saline solution, i.e. saltwater, was pumped into your system). If you received a colorful drug then your pee might be pink, which is always a bit odd.

A cold and windy wait atop Mt. Parnassus, a sleepy shuttle ride, and then a walk back home, usually with a stop at the library, the grocery store, and/or the bank on the way. (When you are car-less, you have to combine errands!) The whole adventure has taken a good 6 or 7 hours, depending if the drugs that week were "quick" or "slow". At that point, I'm usually pretty tired, so a nice long 4 hour nap (often suffused with strange and vivid dreams) is in order.

And that's the weekly hokey pokey.

Cancer Etiquette

CNN.com has a front-page article today about what they term "cancer etiquette": how to talk to a cancer patient...and what NOT to say.
http://www.cnn.com/2008/HEALTH/conditions/07/07/hm.cancer.etiquette/index.html

There are a lot of other sites out there that also collect silly things that people reportedly have said to cancer patients. My favorite so far is this story, from Chemo Chicks:

I was having some very difficult reactions to my most recent chemo treatment. My husband insisted on taking me in to see my oncologist. On the way a motorcycle police officer pulled us over. At this point I was white as a sheet, shaking, bald and obviously in dire straits. As I reached for the auto registration, the officer leaned into the car, looked me over and said "My dog had cancer. I had to take him to the hospital for treatments and I spent over eight thousand dollars on him. Too bad, he died anyway." As if that wasn't enough, he capped it off with, "Did you know that when a dog has chemo it doesn't lose its hair?"

I've heard my share of silly and awkward comments. I have to say the most uncomfortable question is "How are you feeling today?" I know people mean well, but how do I respond? "Well, I could only sleep for two hours last night, it took me an hour to use the toilet this morning, I feel like I'm about to hurl, my vision's blurry, and my head is exploding in pain. But other than that, I'm doing great. Oh, wait, don't let me forget my gracious smile." Also, referencing other family members, friends, or co-workers who have had cancer is a nice stab at empathy, but not when those stories almost inevitably end in "and then after a valiant battle, he/she died". And it may seem strange, but don't focus your conversation on "chance of survival" or "a very curable disease". Because now my life becomes one of eternal vigilance against the threat of recurrence; and the looming threat of secondary cancers some years down the line resulting from the radiation and the chemo drugs I took in this round.

So what is a well-meaning person supposed to say? Far be it from me to dictate; each person's cancer experience is so unique. But from my limited experience, I'd say to talk about the person and not the disease. Even when I'm busy with other things, the treatment, the side effects, the limitations still percolate in the back of my mind. I really don't need to put them on high heat. I like to talk about my projects at work (although the frequent comment, "So, you must be on a leave of absence" for some reason infuriates me - probably because it implies a life of lounging and leisure, whereas au contraire, I've been putting in three full days and around 30 hours a week at work throughout, managing an understaffed and overworked department and preparing for multiple high-profile events scheduled to occur sometime between my chemo and radiation treatments in just a few weeks...) or my post-radiation plans. Books I've read recently, music, politics, religion, economics - these are all fair game...I'm still me, and any conversation ignoring the elephant in the corner I'm all for.

"Hang in there", books, cards, notes, posts, emails, etc., these are all great. Sometimes it can be a very lonely and isolating existence, going through chemo and wrestling symptoms and lying around trying to recover, staring at the ceiling and unable to sleep, and it's great to know I'm still a person, still part of a larger community, not just in medical limbo. And with a lapse in modesty, I must say that the all-time coolest comments I've gotten yet have been those complimenting my new appearance. Hidden behind Oakleys, bandanna or bald, more than one person has given me the "fierce" or "bad-ass" thumbs-up of approval...even strangers who don't know I'm sick.

Now that I can go for.

Withdrawal

I've never smoked. (Or chewed, as you seem to have to add if you've been down South.) Never tried street drugs. Don't drink tea, coffee, or soda. Only a social, occasional drinker. Vegetarian, so I don't ingest any of the weird hormones in meat. I try to stay away from too many refined or processed foods, or too much high fructose corn syrup. And as I've mentioned, I avoid just about every OTC drug, and only take the prescribed ones under duress. At the hospital, under the guise of curiosity, I carefully ask the nurses about each of the colored pills in my "pre-med" cup...then discreetly pocket any of the "optional" drugs when they're not looking. The purloined pills are collecting in a pill bottle at home, symbol of a small act of defiance in the face of a forced battle.

As a result of all that, I don't know what it's like to crave nicotine, or alcohol, or caffeine. Or any drug, for that matter. When the soda machine would break down on the ship, after the canned sodas and Red Bulls sold out some 24 hours later, and the entire crew became noticeably crankier...I had no referential experiences with which to sympathize. I guess the closest I've come to a drug craving has been a couple times I was sick and doped up on cold medicine, afraid to space out the doses for fear of stuffing up my head again. And I'm pretty addicted to gum. I've gone on late-night, store-to-store "gum runs" before. Does that count?

But I've never gone through withdrawal. That, in my mind, was reserved for junkies in rehab, washed-up homeless thrashing on cots in a halfway house. So I was utterly unprepared for the fetal-position-inducing malaise that greeted me with unexpected suddenness last night. My whole body ached; I couldn't sleep, even though I was exhausted; my head throbbed; I almost blacked out trying to stand up; and wave after wave of nausea washed over me. In my 2 am state of mental frenzy and physical exhaustion, I tried to parse the symptoms. It didn't make sense: I'm used to unpleasant side effects, but normally the "even weeks" aren't that bad; and even when I do feel sick, it's usually only for the first day or two. This was early Sunday morning already.

Amidst the wracking of a bone-shattering headache, it at last occurred to me that I was suffering withdrawal symptoms from prednisone tapering. Because the body stops manufacturing the adrenal steroid that prednisone mimics, you have to gradually wean yourself off the drug. Otherwise, you risk a life-threatening situation. The nurses put me on a schedule for reducing my doses, and Friday I cut back for the first time by 25%. I'm immensely glad to be getting off this drug, if only because I hate being dependent on anything, let alone little round unassuming peach-colored pills, but my body has become so dependent on this crutch that it's not letting go without throwing a few temper tantrums in response.

I do not envy those endeavoring to break a long-held or deep-seated addiction, particularly when "relief" is as near as the closest cigarette, bottle, or coffee cup. It's remarkable to me that just six weeks can cause such a recalcitrant reaction to letting go (actually, your body stops producing the steroid after just 7 days of use), but it only further confirms my conviction not to take any drugs other than those absolutely necessary. Case in point: two of the anti-nausea drugs, which sit temptingly on my counter at home but are, as yet, untouched. They are highly addictive. Why risk it? I'd much rather beat back a grouchy stomach than face days of withdrawal, particularly if that withdrawal would be anything as bitter and clutching as this is proving to be.

Strangely Normal

Not, of course, that I've ever been "normal" in any sense of the word. Still, it never fails to surprise me how easily I can unintentionally slip across the line into fooling people that I'm not sick.

Over the weekend, thanks to an overcast but moderately warm day, I went bare-headed to the Pride festivities here in town. (I usually cover my head in public as much for sun protection as to control shock value - I really am completely bald. But it's more comfortable, and breezier, without.) Perhaps I should have expected it in such a flamboyant and exhibitionist crowd, but not a single person took my rather untraditional haircut as evidence of illness. In fact, one eager admirer wanted to take my picture; a handful of others commented approvingly on my "bad-ass" look. Too bad I didn't pick up a leather vest while I was there to enhance my credentials.

At work, I've left a lot of folks hopelessly gender-confused: I've been greeted in passing as "sir" too many times to count, and my undoubtedly feminine-voiced "good morning, how are you doing?" reply as our paths cross leaves strange looks hovering in the air behind me. An equal number of folks glance in my office at a shaved head in uniform and knock, "Excuse me, sir...?" only to turn red with embarrassment as a clearly female individual welcomes them in. (I'm careful to be as good-natured as possible with everyone to put them at ease - particularly with the really junior folks, who tend to be the most mortified at their mistake. Which, perhaps, I can understand: we suffered through countless late-night "Ma'am not sir" pushups at OCS as corrective action for accidental sleep-deprived gender mixups in address.) The older, balding gentlemen at work are excited to find an unexpected point of commonality with a relatively young female; the females are uniformly excited to see a military woman who's shaved her head and gotten away with it. (I think we all secretly aspire to be G.I. Jane, but the rather vague Coast Guard regulations class female head-shaving as a potentially "radical" move and thus left to command discretion.)

But beyond this most obvious sign of my treatment (the lumpy port and scar in my upper chest usually hide under clothing), which, surprisingly to me, few openly associate with cancer suffering, I seem to be unwittingly deceiving people into thinking I'm not sick at all, or that my side effects are relatively minor. Perhaps they're just being polite, or embarrassed to speak up. Perhaps I'm too energetic and determined. Normally, of course, I'm overjoyed for people to think I'm not sick. It gets past all the uneasiness and just lets me be me. Nothing's more awkward than someone clasping your hand in both of theirs as they sniff out, "I'm so glad you're making it ok. I'm praying for you. You know, I had an uncle who just died of cancer..."

Where it becomes a challenge is when I feel I can't live up to the expectations being set, expectations perfectly reasonable for a well person but sometimes a challenge when treatment and side effects get in the way. Often I fend it off with directness, with humor: being asked to attend a meeting on a hospital day, I pointed out candidly (despite the company of several senior personnel) that as I attended chemo treatment on Thursdays and Fridays, I'd have to squeeze it in during the first half of the week. But it's quite a different matter when I'm expected at a meeting - indeed, one of the key players - and I'm too sick in the bathroom to make it on time. Or when I can't concentrate on an important conversation because I'm in too much pain. Or when I get exhausted only halfway through a work day stretching from 0600 to 1700. Or, most maddening to me, when I just can't get everything done, because I'm only at work three days a week and just can't muster up enough focus on my recovery days to work from home.

The surprises pop up elsewhere, too. Admitting that I can't taste the delicious food I'm sharing with friends or family. Needing to curl up for a catnap in the other room like a little kid in the middle of the day. Taking a break outside or in the car to fight down a wave of nausea. I want so desperately to be "normal", to blend in as a non-sick person; the lapses are frustrating, the visible lapses so much the more so.

But perhaps I can take comfort in knowing that I never actually was all that normal to begin with.