Chemo Round #2

I've always prided myself on being a quick study. So, after one session, I felt that I'd grasped the essentials of chemo and was ready to move on.

It's just how I felt when I first got my period. Okay, I'm initiated and now I know "what it means to be a woman" in the immortal words of the Kotex pamphlet the school nurse handed out. So I'm done. When the next month rolled around, the repeat performance came as an unpleasant surprise.

"What, again?" l whined. "Are you kidding?" The vista of all the endless reruns for the rest of my life seemed impossibly dreary. (The pamphlet had neglected to mention the concept of menopause, although, at age 13, that was decades off anyway.)

That same sinking feeling descended last night when I realized that, yes, we'd be returning to the cancer center today for Round 2.

Around noon, Mark chirped, "It's time to go, honey."

I hissed at him and went slinking off.

He finally tracked me down in the closet where I was sulking and hauled me out by the scruff of my neck as I yowled pitifully.

Why, yes, I am a crazy cat lady. How did you know?

We dragged ourselves into the cancer center 30 minutes late and proceeded to hurry up and wait.

The blood draw got complicated. The needle went into my port fine, but the blood wouldn't come out. After deep breathing and waving my arms didn't work, they proceeded to have me lie on my back, then my side, along with more deep breathing and arm waves. Just as they were getting ready to break out a drug to dislodge whatever was obstructing the tube inside me, it finally started to flow.

To block out the medical travails, I tried to immerse myself in a magazine, but I'd made the mistake of picking one of the glossy periodicals just for cancer patients that lie around the waiting room. Essentially they're beautifully printed catalogs of pharmaceutical company ads interspersed with cheery tips about eating brocolli and blueberries. My eyes lit on a two-page spread about Neulasta, the shot I get 24 hours after each chemo session. They'd thoughtfully listed the side effects in a normal type size, so I was able to ponder the ramifications of ruptured spleen ("A ruptured spleen can cause death," the ad helpfully said) and acute respiratory distress.

Oh, and they make Neulasta out of E coli.

Note to self: Stick with People or Entertainment Weekly.

We got a private room again, thanks to my having a cold. They could hardly risk having Typhoid Mary sneeze all over her chemo roomie.

The routine was familiar. After I settled into the recliner, my nurse Valerian hooked up the pre-chemo IV bags (steroids and other anti-nausea meds) and the machine began its monotonous pumping.

When it was time for the Big Show -- Adriamycin, the red death, the red devil -- Valerian robed up in his HazMat gown and gloves in front of us, while I resolutely engaged in the most life-affirming activity I could conjure up: Shopping online for stuff I don't need.

I was typing in my credit card number while he was unwrapping the two foot-long syringes of red death. I pressed "Buy" as he inserted the first syringe into the tube dangling from my chest. The confirmation e-mail came as he started to press the plunger.

"I'm not getting any blood return," he said, frustrated. "You're going to have to lie on your side again."

As we reclined the chair, Valerian explained what he meant. "I have to see the blood return (it shows up in a little spur tube off the main one) so I know it's going into your vein and not anywhere else. It could burn you seriously if it's outside your vein."

That's also why they administer Adriamycin manually. "The machine could do it, but it wouldn't know to stop in time if you feel burning," he said.

Dr. D and the nutritionist were both pleased with my blood counts. The white cells are hanging in there -- thanks, Neulasta and let's skip that spleen stuff -- the iron was good, everything was pretty normal. I was as proud as if I'd passed a tricky calculus final.

We were out of there in less than five hours. If history repeats itself, I can expect to have a few days of feeling under the weather.

Two sessions down; six more to go. I'm gonna woman up. I'm gonna get through this.

The day after: Mal de mer

They lied.

At chemo orientation they said we’d feel relatively okay the day after treatment.

Last night (Thursday night, right after treatment), I was indeed fine. Mark and I strolled to the health food store, I cheerfully chug-a-lugged water and herbal tea as directed, ate a light dinner, watched some mindless TV and collapsed into bed by 9:30 p.m.

My eyes flew open at 1 a.m. My stomach was sending out major distress signals. From tummy to throat, unhappiness reigned.

They’d explained this to me over and over. Chemo kills all fast-growing cells. Your entire GI tract is one big mucous membrane, packed with cells that are constantly dying and developing. Chemo turns the lining of your stomach raw. Your stomach signals your brain that it’s not happy. Your brain sends a signal back, “Throw it up.”

The anti-nausea drugs act by blocking one or both of these signals. And they are working a bit. I don’t actually have to vomit. I just feel queasy. Unfortunately, it’s hard to ignore.

I tried to take deep cleansing breaths and clear my brain. “In, fresh. Out, flower.”

But my evil monkey mind tortured me with images of food as if it were trying to trick me into a mad dash to the bathroom.

Embarrassingly, one of my go-to images for relaxation comes from a Clairol Herbal Essence commercial circa 1970s. A cartoon girl with Rapunzel-worthy hair flits through a verdant forest until she reaches a beautiful mountain pool where she disrobes (the hair provides discreet coverage) and takes a refreshing dip (while polluting the water with those pretty effervescent shampoo suds).

Instead of helping me unwind, that image now conjured up the thought of all the water and liquids I’m supposed to drink, 64 ounces a day. The very idea of water was enough to clench my stomach a little more. I ran through various other beverage options – all seemed unpalatable. Getting frantic, I inventoried potential light foods I might be able to stomach. All seemed downright repulsive.

I could hear my stomach warning me as if a miniature mobster from a bad B movie had taken up residence in my body, “You’d better not try to put anything down here -- or you'll be sorry.”

FRIDAY AFTERNOON UPDATE: I wrote the above in the dark hours of despair. Initially I tried one of the antinausea meds Dr. D had recommended for nighttime, because it's supposed to induce drowsiness and stop nausea, but it did neither.

At 3 am, Mark convinced me to take the heavy-duty Emend which I was supposed to save for morning. "This is morning," he pointed out, reasonably enough. It goes down along with Decadron (a steroid). I have just two Emends, which cost a whopping $110 per pill, covered by insurance but I'd gladly pay double out of pocket.

And that did the trick. The nausea finally slipped away and I was back in bed by 4.

I woke up feeling just mildly "peakish." After a lifetime of loving to eat, overnight I have developed a deep disinterest in food. Still, breakfast went down okay and I'm sipping my fluids as directed.

Some folks told me that the steroids (I had IV ones before chemo plus the Decadron) would give me a burst of energy. I had imagined that I'd be bustling around the house, finally reorganizing the linen closet and prepping the garden for winter, if not actually hitting home runs and acing the Tour de France.

No such luck.

Once more I'm pleasing the kitties by lying docilely on the couch all the day long.

First chemo: Deflowered and doing okay

Wearing HazMat gear – a Smurf-blue gown and green surgical gloves – my nurse Monica entered my chemo room carrying two huge syringes filled with red-orange fluid.

It was Adriamycin, the most potent cancer-fighting drug. Patients call it “the red devil” or “the red death” for its devastating side effects – nausea, hair loss, mouth sores, exhaustion. I’d already heard a full disclosure that those effects could include cardiotoxicity – damage to the heart muscle – severe enough to cause congestive heart failure. Each patient has a lifetime quota of how much “red death” they can safely receive. My current treatment will amount to just under half my lifetime allotment. So if I get cancer again, there will still be a few magic arrows in my oncologist’s quiver.

“Are you ready?” Monica asked.

This was the moment I’d most dreaded, the one that had kept me up last night.

“Let me send Mark to get some ice chips,” I said. “I heard that keeping them in my mouth while you administer it might prevent the mouth sores.”

Monica laughed. “There’s a real trend now among patients who think that. It’s fine if it makes you feel better.”

I was a little disappointed that this tip – which I’d gleaned from other chemo patients – didn’t have a nurse’s seal of approval, but figured I might at least get a placebo effect.

Once I’d loaded my mouth with ice, making me feel like a squirrel preparing for winter, Monica inserted the first syringe into the tube that dangled from my port, and slowly pressed the plunger.

I watched the Kool-Aid-colored fluid flow through the clear tube and could see when it started to enter my body.

And I felt – nothing.

There was no sensation from the fluid, no burning, no buzzing, no tingling.

In fact, Monica had warned me that if I did feel burning, I should tell her immediately and she would stop, because that would indicate that the stuff had leaked. It can cause third-degree burns on flesh, but doesn’t have the same impact on blood vessels.

That anticlimactic moment typified what turned out to be a tedious day of waiting and schlepping.

We showed up at the cancer center this morning laden with three bulging bags of supplies – food, hot and cold beverages, books and magazines, a laptop, a giant 3-ring notebook the center gave me and expected me to lug in for each treatment, my seven bottles of prescribed meds and vitamins (so they could double-check them).

When I went to the VAD (vascular access device) room to get blood drawn, a motherly nurse named Vivian exerted herself to be extra comforting, because she could see I was shaking from anxiety about my first time.

“It won’t be as bad as you think,” she said. “Just this one little needle stick may be the worst part of the whole day.”

And she was right. Inserting the needle into the port was just a pinprick. Once it was in with a tube connected, it stayed there all day so they could both draw blood and administer drugs through it.

“Some patients really grow to love their port because it saves them from getting stuck all the time,” Vivian said.

“Love” might be overstating it, but I could definitely see the advantage.

Then it was back to the waiting room, then back to the VAD room for another blood draw, then a wait while they called my doctor to see if she wanted yet another blood draw (she did).

For the vital signs tests, three different technicians each called their patient at the same time, creating a scene like the cash registers in Filene’s Basement. Each patient had a support person and a technician, so there were nine of us milling in a narrow corridor, the three patients waiting our turns to sit in the single chair. It was clear I was a newbie, as the other two were already bald. Mark and I tried (unsuccessfully) to tuck our giant bags discreetly out of the way.

We met with Dr. D, my oncologist, who was as efficient as ever, this time focusing on the post-chemo meds.

Friends have asked if I like her, and I do, but that’s almost irrelevant. Much as it pains me to resort to martial clichés, the intensity with which she’s outlined my situation has made one thing clear: This is war.

You don't pick a general who's nice, namby-pamby or conciliatory. Dr. D is someone who will marshal all available resources to eradicate the enemy that has invaded my body.

“The first time is your best shot to get rid of cancer,” someone told me. "If it comes back, they can't do as much. You want to do everything you can to knock it out now."

My fervent hope is that this phase will be the one and only time.

That's why I'm doing the dose-dense chemo Dr. D recommended. The theory is that by hitting them every other week, the cancer cells won't have as much time to recover before the next onslaught. Of course, neither will the healthy cells that also get destroyed.

After still more waiting and then some waiting, we were finally ushered to the infusion center and into one of the alcove/rooms where a portly middle-aged man sprawled on one of the two recliners, being tended to by a pair of nurses. My face fell. I really, really didn’t want to spend the day making strained conversation with a guy who looked like the banker dude from “Monopoly.”

But the nurse coordinator wheeled us right around and whispered to me: “I’ll find you another room, hon. I like to keep the same gender together.”

I could have hugged her.

It made for yet another wait, but she not only found me a different room, it was a private one, usually saved for disabled patients.

“We like to make things easier for your first time,” she said.

Monica hooked me up to the pre-chemo drugs that forestall nausea. A pump emitted a monotonous whirring and thump every other second as it pushed the drugs into me.

Then it was time for the Adriamycin, which took 20 minutes to administer via the syringes. Next up was another chemo drug, Cytoxan. It has its own litany of side effects, many of them similar (but not as intense) as those from Adriamycin, plus a few others, such as bladder infections. That got pumped in for an hour.

All day long, we heard lengthy (and repetitive) discourses from everyone – doctor, pharmacist, nurses, nutritionist – cautioning about the side effects, discussing all the meds to take to stave them off, advocating that I drink drink drink fluids to flush all the poisons from my body. Believe me, I’m motivated.

“You should feel okay on your chemo day and the day after because the IV steroids will still be in your system,” we’d heard at orientation. “But Day 3 – Whamo! That’s when you’ll start feeling tired and cruddy. Day 4 will be bad. By Day 5, you’ll start feeling like you’ll live. On Day 6 you’ll see more light at the end of the tunnel, and by Day 7, you should feel okay.”

After six hours at the center, three of them getting the various meds, it was finally time to go home.

“You’ll probably want to get a buzz cut before your next chemo in two weeks,” Monica said in parting. “By then your hair will be falling out in big hunks.”

Countdown towards chemo

It’s not just Drano they’re injecting into my veins.

It’s actually a carefully crafted “cocktail.” As I understand it (I may be bit shaky on the precise medical terms), the ingredients are Drano, Agent Orange and Round-up. See, it contains something orange – that must mean it’s kind of like a screwdriver, albeit one made with the worst rotgut imaginable.

How toxic is it?

At chemo orientation, they said our partners must wear condoms for protection from our soon-to-be-noxious bodily fluids.

We toured the "infusion center.” Since I’d heard so much about the comfy recliners for receiving chemo, I was picturing that it would have a homey feel, like an upscale birthing center with Martha Stewart-esque fabrics and colors and lots of nice touches to warm it up.

It looks a lot more like an ICU.

There’s a nurse’s station in the middle and maybe 10 patient rooms – actually they’re more like small alcoves. As a cubicle dweller, I should feel right at home.

The décor may be lacking but the people are indeed warm.

Melody, the head nurse, is a friend of a friend, and gave me a huge, welcoming hug and whispered that they’d take good care of me.

The orientation was informative if not totally comforting.

The best news is that retching one’s guts out after chemo is a thing of the past. Patients may still feel queasy, but the nausea-blocking drugs are super-powerful. I’ve been prescribed five separate meds to prevent nausea and that doesn’t count the anti-nausea drugs they’ll give me intravenously. If need be, post-chemo we can return to the infusion center for more IV anti-nausea meds and IV hydration.

Fatigue is another matter. There are likely to be several days of feeling cruddy after each infusion. Since chemo is cumulative, the bad days can get worse and more frequent with each new cycle.

I don’t feel sick. It’s still so hard to grasp the paradox that I am agreeing to be poisoned – in the pursuit of good health.

Treatment plan: Grim and grimmer

Me and my girls will be going to reform school, it turns out.

My new medical oncologist, Dr. D - young and whip-smart with a laser-like focus on killing cancer cells -- wants us enrolled in an aggressive chemotherapy regime asap.

Dr. D isn't big on sugar-coating. She used the phrase "that's a poor prognostic factor" at least four times in discussing various aspects of my cancer -- the fact that the lymph-node tumors had grown outside the nodes (called extra-capsular extension), the rate of cell reproduction (K-67 of 15%), the size of the lymph-node tumors (biggest was 1.2 cm), and the fact that the cancer was in the lymph nodes at all.

She recommends "dose-dense therapy" in which I'd get chemo every other week as "better for disease-free survival." The other option is chemo every three weeks, which might allow more recovery time from the nasty side effects.

I have to return for an hour-long briefing on side effects, but Dr. D touched on several that have long-term medical implications: damage to the heart muscle; bone thinning; and neuropathy, which is tingling and numbness in the extremities "that's not completely reversible."

Losing my hair is guaranteed. Fatigue and nausea are also par for the course.

Basically I'm signing up to have them inject Drano into my veins on a regular basis -- the literature they gave me said the drugs are so toxic they can burn your flesh if they leak out of the injection site.

She strongly recommended that I stop working for the rest of the year. "You'll be getting super-strong chemo and antinausea drugs every two weeks. I don't want you struggling through and feeling horrible and in the bathroom sick at work."

Mark and I both sat there in a state of shock. My take-away was that the cancer news is grim and the treatment outlook is brutal.

There's a lengthy list of procedures to tackle before treatment starts: surgical implantation of a port to deliver all these toxic drugs, echocardiogram to get a baseline of how my heart currently functions, bone density scan, full-body PET/CT scan, brain MRI.

I also need to meet the radiation oncologist who will be treating me after chemo, and take a tour of the chemo facility at Herrick.

It should be just like touring a birthing center -- but with bleak foreboding instead of happy anticipation.

Another bosom buddy

It's like an underground sorority -- friends and friends of friends who've had breast cancer. The other night I had dinner with Marianne, whom I've known casually for years.

Slim and elegant, Marianne has a great sense of design that shines forth in everything from her chic purse to her precisely angled silver bob. She had breast cancer 13 years ago when she was in her early 50s -- my age (that itself suprises me, because I thought she was my age now). It had spread to her lymph nodes. That means it had metastasized - which is one of my fears; I'll find out my lymph node status after my next surgery on Sept. 2. Despite having the more-extensive lymph node surgery, she never had a problem with lymphodema (another one of my fears) and neither did any of the eight women in her cancer support group.

Along with a mastectomy, she had a hysterectomy and oophorectomy (removal of both her ovaries) because there was something suspicious on one of her ovaries.

"I just wanted them to take it all out because I didn't need it anymore," she explains. "I wanted to be done with it didn't want to be worried about it." After surgery she went through months of chemotherapy.

That all sounds grueling. Yet she says it wasn't an ordeal.

Chemo side effects weren't that horrible. She never got outrageously nauseous, just had that slightly "off" feeling you get in early pregnancy.

"Somehow I just sailed through it all. I lost my hair, which was upsetting, but then I got a really cute wig, mainly because I commute by BART and I didn't want to stand out. That wig was so flattering that I remember someone at work telling me I had never looked better. I just had to laugh."

She apologizes that she doesn't remember more specifics.

Actually, that vagueness is more reassuring than a detailed, harrowing war story. The message I get is that this wasn't cataclysmic; it was just a brief chapter and then her life flowed on, not forever cleaved into Before Cancer and After Cancer.

Did she decide to have reconstruction? Nope. "I'm not going to be posing for Playboy, but my husband likes me."

That's a great mantra; one I could take to heart.