Chemo 4, Day 2

So...I am officially past the halfway mark. 4 chemos down, baby.

The bad news is that my latest concoction of meds, Nexium + Kytril + Metoclopramide, which I took 1 hour before my chemo, didn't seem to do a damned thing for me. I still vomited right on schedule. Well, even earlier in fact. And then again a few hours later. And I got bonus hits of drowsiness from the metoclopramide and heart palpitations from the Nexium on top of it all. As I was gasping over my now faithful old friend Bucket, which I had propped on the sink this time, a position that feels better than any I'd tried earlier, I was thinking about how the Eskimos purportedly have over a hundred words for snow. And I was wondering whether if I do this enough, I'll have multiple words for vomiting.

This round of vomiting felt different from the earlier rounds, probably due to the GERD. I was sort of belch-vomiting. It was noise-accompanied by the kind of belching that guys do to out-belch each other at the dinner table. Hilarious. I've never been able to belch on purpose. And here I was belching and upchucking at the same time. Holland's Got Talent!

The contents of my vomit were rather uninteresting this time. A puddle of murky brown goop. Brown bagel plus hummus. I will go for a more colorful mix in Round #5. If I'm going to throw up no matter what I do, I'm going for broke. Tuna fish sandwiches, spicy hot Thai food, cheese pizza. That bagel plus hummus tasted awful. The Dutch do not know how to make a good brown bagel.

Today, when I woke up, I decided to forgo the Nexium and metoclopramide. Back to square one with Kytril alone. The morning was a bit rough. My predinisone pills were hard to swallow, and I forced down some cereal because I know I didn't get a single bite yesterday that I didn't eject back out.

The Uglies saved me. Yes, the Uglies. This great book by Scott Westerfeld, written for teenagers, about a utopian/dystopian world where normal people are considered ugly until they turn 16 and then get operations to become pretty. Besides all the interesting social, political, philosophical, ethical implications of this way of preventing war and inequality, I loved the high-tech gadgets Scott invented for the book, especially the hyperboards, which you can ride around trees and over whitewater rapids. Scott must be a snowboarder!

Anyway, I spent most of last night reading the book in between vomits and finished up the book in the morning after breakfast. By noon, I started to feel better, though after I finished the Uglies, I decided to pop Cloverfield into the DVD player. That might have been a small mistake. Not as bad as watching Sweeney Todd on Day 2, but almost. Cloverfield is about an attack on NYC by a giant monster, but the entire movie is filmed with a hand-held camera. As you can imagine, because it's an action/monster movie, there's a fair amount of blood. The camera is constantly shaking and being dropped. Even if I wasn't nauseous at the start of the movie, I would have been at the end. But nevertheless, I made it through to the end, by periodically looking away from the TV and finding a fixed steady point above my couch. I love sci-fi action films!

Today turned out to be a movie marathon day. On Thursday night, I had managed to cycle to the public library and hauled off 6 movies. It was a real bonanza. Usually, I am lucky to find one movie there I really want to see. After Cloverfield, I watched Ellen Degeneres Live. She's fantastic. And laughter is, after all, the best medicine. Next was Sicko, which was fascinating, revealing, and heartbreaking at the same time. My favorite Michael Moore film so far. And of course, bound to churn up all sorts of thoughts about my own predicament. On the one hand, I'm so lucky that this happened to me overseas in Amsterdam. On the other hand, I want to move back to the U.S. and watching this movie made me realize that I might be trapped here. My only way back would be to find a job at a large enough company where group health is offered, and then NOT LOSE THAT JOB. The bit at the end, when you realized that even Cuba offers far better health care to its citizens (and in the movie, five of ours!) than the U.S. free of charge, was the most affecting. I had to cry when I saw how grateful the heroes of 9-11 were to finally be heard and not have to fight the stupid health insurers anymore. I can't believe how messed up things are in America these days.

I followed up with Corpse Bride, a fun movie. And now, I'll finish up with either Tropic Thunder or In Bruges. Probably the former, as I hear that there's at least one scene in In Bruges that's incredibly disturbing to watch. Movie time...

Fun Stuff I Am Doing During Chemo

It's not all just heaving over a beige plastic bucket, wishing that I wasn't retasting the shoarma I ate 5 hours ago.

Since April 3, Day 1 of Cycle 1 (D1C1), I:

- saw Ojos de Brujos at Paradiso (D5C1)

- had a drink at the AmstelHaven and then a tea at the Amstel Hotel (D8C1)

- went to an Chinese Hot Pot Dinner Party (D17C1)

- ate Dutch food with my mother and brother at Moeder's restaurant where, after 10 minutes of avid searching, we finally located the framed photo of my mother that we donated the last time she visited Amsterdam about a year ago (D20C1)

- walked all over town decked out in orange on Queen's Day (D7C2)

- danced during my friend Joel's Drum & Bass DJ set at Greenhouse Effect and then attempted to banter with very drunk Dutchmen at my first ever houseboat party (D7C2)

- went for a drive to Oude Kerk for a super-delicious brunch of chicken club sandwich and Dutch appeltaart with whipped cream, followed by a walk around Amsterdamse Bos (D10C2)

- attended a dinner cooked by my friend Sandrine, who is a fabulous French cook and hostess (D16C2)

- picnicked in Saphartipark, where alas -- a @#%&ing dog peed on my bicycle (D17C2)

- biked to the Hole in the Wall pub for a friend's birthday drinks, watched Yankee Come Home at Boom Chicago, and then went back to the pub to catch up on the results of 2009's Eurovision song contest (D2C3)

- saw one of the most amazing taiko drum groups in the world, Yamato, perform at the Carre (D4C3)

- drank a mint tea at the Blue Teahouse and then played ping pong at OT301 (D5C3)

- went to a barbeque and then played a Mario driving game on the Wii (D6C3)

- saw the always-educational-and-inspiring annual World Press Photo exhibit (D10C3)

- biked 45 minutes each way to see Star Trek in IMAX (D10C3)

Promisingly, I'm getting out of the apartment more with each cycle!

Also, I restarted my lapsed membership to the public library and have started biking there every weekend to borrow DVDs. So far, I've watched the whole first season of 30 Rock, Shortbus, Mamma Mia, Darjeeling Express, In Her Shoes, Step Up, and Fletch (again). This in addition to: The Changeling, Australia, Mystery Alaska, Legends of the Fall (again), and Finding Nemo (again).

I also tried meditation a few times, following a Gaiam DVD I borrowed from my friend Sarah.

Also thanks to Sarah, who's a voracious reader and shares my taste in books, I read the first two books of the Twilight Series, The Time Traveler's Wife, Water for Elephants, and a Short History of Tractors in Ukrainian.

Now I'm reading a Renate Dorrestein book in Dutch I bought on Queen's Day for 50 euro cents as well as Brilliant Orange: the Neurotic Genius of Dutch Football, which I bought using a gift certificate I got from my friend Marta for my birthday.

I've had four visitors from the States.

My mom brought me Wii Fit and got me hooked on sudokus. In return, I made her watch Tokyo Zombie, which is probably the only non-Oscar-nominated movie that my mom has ever watched. I think I got the better end of the deal.

My brother Eric somehow managed to stuff Wii Rock Band, which includes a drum set and guitar, into his suitcases and lug them over here from California. So I'm learning how to play the drums and guitar now, or at least distinguish primary colors from one another under pressure.

My friend Lois gave me a book called 'The Healing Power of Chocolate' and brought me dark-chocolate covered pistachios from Trader Joe's, which prompted a whole series of emails with my nutritionist friend and eventually resulted in my sampling different brands and formulations of dark chocolate on a regular basis (so far Toblerone is coming out ahead).

I'm proud to say that I introduced my brother Ed to the diabolical genius of Joss Whedon. We watched the entire season of Firefly while he was here. I also introduced him to moth.org and This American Life. We both learned how to play Odin's Ravens together, but he won easily. While I like board games more, he seems to be better at them; so unfair!

Looking back, I guess I managed to still do a lot during my first three chemo cycles. And the list didn't even include the approximately 30 hours a week I've been working from home! Not too bad for someone with a serious illness. Although I have to admit that I've had more mandatory free time than usual, due to the fact that most of the Dutch holidays come one after the other in April and May, instead of being spread out through the year. Besides Easter weekend and Queen's Day, we had two days off last week for Ascension Day. In a normal year, I'd be spending these long weekends traveling.

This coming weekend is Pinksteren weekend, and every single one of my friends will be out of town. In fact, most of them will be away on the same sailing trip visiting the islands in the north of Holland, a trip that I wanted to do but in the end I had to back out because, at the time that they were organizing the trip, there were too many uncertainties about how I would react to my chemo treatments. Trapped on a boat, there was too much risk that I could get an infection and not find my way to a hospital or that I would be already be horribly nauseous. So I'll have to entertain myself, which is not usually so hard to do.

These two days (Days 11 and 12) are usually the best days of my chemo cycle. I've been meaning to go to the supermarket for a few days, so I've been forced to get creative in the kitchen, without my usual stockpile of favorite foods. Then it was pouring rain all day, and I was getting obsessive about my current work project, so I thought maybe I would skip the trip again. But finally the sun came out, and in Holland these days it doesn't get dark until past 10pm, and happily I confirmed online that my nearest Albert Heijn would be open 'til 10. I was so excited in the supermarket about having fresh produce again, I was actually humming to myself, and I had to remind myself that I only live less than 5 minutes away by bike; there was no need to buy 15 different fruits and vegetables! As I was cycling home with my treasures, the thought popped into my head spontaneously that I am really so lucky and happy just to be alive. Every extra day that I'm on this earth is another chance to appreciate all the amazing things life has to offer, whether it's big or small. In the past 24 hours: my first taste of cherries this summer, thunder and rain drumming against my window while I snuggle into my warm bed, the view of the sun setting over the canals and old houses of Amsterdam, chatting with my neighbors, feeling the stretch of my limbs and the wind on my face as I biked.

Stephen Jay Gould, Marijuana, and Statistics are Not Destiny

I'd read some essays by Stephen Jay Gould when I was in college. I never knew he was a cancer survivor. This from Wikipedia:

"In July 1982, Gould was diagnosed with abdominal mesothelioma. He later published a column in Discover magazine, titled The Median Isn't the Message, in which he discusses his discovery that mesothelioma patients had only a median lifespan of eight months after diagnosis. He then describes the research he uncovered behind this number, and his relief upon the realization that statistics are not destiny. After his diagnosis and receiving an experimental treatment, Gould continued to live for nearly twenty years. His column became a source of comfort for many cancer patients."

"It was during his bout with abdominal mesothelioma that Gould became a user of marijuana to alleviate the nausea associated with his cancer treatments. Although Gould maintained, "I am something of a Puritan" with respect to any substances that would alter or dull his mental state—not drinking alcohol or using drugs in a recreational sense—he attributed value to the medicinal use of marijuana in helping him to face the painful side effects of his treatment and keep a more positive attitude (Grinspoon 1993). Ultimately, he recognized an important role to the maintenance of spirit through adversity, and that use of marijuana had an important effect on this aspect of his treatments, though he disliked the mental blurring."

"Stephen Jay Gould died May 20, 2002, from a metastatic adenocarcinoma of the lung (a form of lung cancer, which had spread to his brain). This cancer was completely unrelated to his abdominal mesothelioma, from which he had fully recovered almost twenty years earlier."

Treatment Against Nausea

Here's the advice I've collected on the internet against GERD so far:

Avoid anything carbonated or effervescent. [Note: There is a lot of contradictory information out there about carbonation. My doctor recommended that I try original Coke. But both days that I actually drank a Coke (Day 1 and Day 7), I vomited. I've also been recommended to drink ginger ale and ginger beer for nausea.]

Eat bland food.

Avoid dairy products, sugar, fat, and spices.

Prop up the head of the bed 6 inches, or sleep in a recliner.

Cut HALF a banana, mash it, and eat it, chewing slowly.

Sip room temperature water to dilute the acid.

Wear loose-fitting clothes.

Avoid lying down for 3 hours after a meal.

Avoid citrus fruits such as oranges, lemons, grapefruits, tomatoes, and cranberries.

Avoid caffeine in all forms.

Don’t overeat.

Yesterday, I had eaten a late lunch of Dutch pancakes with bacon, apple, and syrup along with a Coca-Cola. We then biked to a cafe outside of town where I shared an apple pie with whipped cream and a Bitter Lemon. At dinner, I had a mango juice and shoarma smothered with a mix of garlic sauce, hot sauce, and mild salsa. At the bar afterwards, I had a bottle of cranberry juice.

In other words, I had broken almost every rule above and am now paying the price. When I came home, I felt awful. I vomited around 2am, and again around 4am, and didn't feel better even after that, though I had nothing left in my stomach to eject. I spent almost all day today collapsed on the couch marathoning 30 Rock episodes, it's almost midnight, and I still feel nauseous. I'm actually afraid to lie down.

I feel like I'm Bill Murray in Groundhog Day, doomed to repeat the same day again and again, until I figure out how to do it right. Now I am in Cycle 3 of 8 and I've figure out how to manage or eliminate constipation, mouth sores, neuropathy, and hair loss. But I'm still struggling with nausea and vomiting.

So far, I've tried all of the following, with no noticeable improvement and some uncomfortable side effects:

Granisetron (Kytril), only prescribed for the first 3 days and hasn't stopped me from vomiting on the first day of each cycle
Zantac (H2-receptor antagonist)
Maalox (antacid)
Pantecta (a PPI), strong side effect of heart palpitations
metoclopramide, strong side effect of dizziness and drowsiness
sativa marijuana, strong side effect of dizziness
original Coke
ginger beer
HCl Plus

My doctor thinks the problem is GERD. For a brief while, I thought the problem was not enough stomach acid. But now I'm wondering whether the problem is dyspepsia -- simple indigestion. I don't have heartburn and only once in a while do I taste stomach acid in my throat, but that's always due to burping. Burping is my biggest symptom and that seems to be caused primarily by excess gas in the stomach, not a weakness of the muscle that separates the stomach from the esophagus.

According to Wikipedia, clinical trials show that antacids and H2-receptor antagonists like Zantac have little to no effectiveness against dyspepsia when compared to placebo. Also very interestingly, metoclopramide, which my doctor prescribed, has also been shown to be ineffective.

The same Wiki article stated that a herbal remedy called Iberogast and PPIs have been proven to work. So next I'll try the Iberogast and ask my doctor to prescribe another PPI besides Pantecta.

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UPDATE: well, I tried the Iberogast. A little bottle sells here for about 15 euros, and I'm supposed to take 20 drops three times a day. The taste is somewhat awful, and I didn't notice a difference after taking it once. I stopped taking it, because the burping has gotten somewhat more tolerable now that I'm on Day 11 of this cycle. I saw today that another blogger (Carrie's NHL Blog) wrote that nausea wasn't a big problem for her: "Zofran, Compazine and Ativan work great and, when I just need a little something, I take 500 mg – 1000 mg of ginger." So I plan to do some further investigation of this option before my next consult.

Day-by-Day Breakdown, Chemo Cycle III

Day 1: vomiting approximately 8 hours after leaving the hospital

Day 2: nausea in the morning, fatigue, slight cough, hyperactivity leading to sleeplessness (side effect of prednisolon), very slight neuropathy in my right thumb

Day 3: same as Day 2

Day 4: same as Day 2 plus extreme dizziness and drowsiness after taking metoclopramide in the morning

Day 5-6: same as Day 2 plus burping (note that the only anti-nausea meds I took on these days was Maalox)

Day 7: same as Day 2 plus heavy burping, vomited twice in the middle of the night (note that I made the mistake of eating shoarma with hot sauce and ran out of Maalox)

Day 8: same as Day 2 plus burping and nausea (took 2 Zantac pills)

Day 9: nausea, burping, fatigue, slight cough

Day 10: nausea, burping, fatigue

Day 11: burping

Day 12: burping

I really need to find a good solution for the nausea and burping!

Treatment Against Peripheral Neuropathy

Two weeks ago, I experienced a little bit of peripheral neuropathy (tingling in hands and feet, fingernails and toenails turning black). My right thumb seemed to suffer the worst and alternated throughout the days between numbness and tingling.

I read that it's best to address neuropathic symptoms as soon as they are noticed; otherwise, more serious side effects can develop. But there is not so much information available on the web on how exactly to go about tackling the problem.

Other survivors have highly recommended taking 10 grams of glutamine daily, acupuncture, and (to a far lesser extent) professional massage or acupressure. Unfortunately, alternative treatments are not covered by my insurance policy. In some ways, this is a relief for me, because then I'd have to mount a campaign to persuade my not-so-holistically inclined doctor to refer me to one of these specialists. I don't think I have the energy for that.

In the meantime, as this particular side effect is not too bad at the moment, I tried self-massaging my hands several times a day using a combination of techniques from these videos:

Self-Massage for Hands
Ten Step Hand Reflexology Self-Treatment

Note that the Expert Village series also includes self-massage for the neck, tired eyes, bottom of feet and heels, feet in high heels, after-meal relief, arms, back, and lower back. Also, if self-massage doesn't appeal, one website recommended asking a partner or friend to learn massage and have them perform it on you (one way to test whether they really mean what they say when they say: "let me know if there's anything I can do!"). I quite liked that idea, but the nice thing about self-massage is that I can do it every day, several times a day, whenever I want.

The hand self-massaging feels good (I do it almost subconsciously now, when I'm waiting in line at the pharmacy, for example), but didn't produce any noticeable reduction of my existing neuropathic symptoms.

But yesterday, I massaged my entire body using a powerful electric massager I bought years ago from Sharper Image, focusing on the palm of my hand and all around my thumb. This not only provided instant relief, but even hours later, my thumb neuropathy has virtually disappeared.

I've also noticed recently that if I wear warm mittens and socks to bed, I don't wake up with tingling in my feet or hands. It makes sense to me that the blood should circulate better if it's kept warm, so I might try wearing my mittens around the house as well.

It could be that the neuropathic symptoms are simply waning as more days pass after my last chemo treatment. I'll have to see whether these techniques will continue to work when I plunge into Chemo Round 3, which begins next Friday.

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UPDATE: now it's Day 8 of my third chemo cycle, and I have (so far) less neuropathy than I did during Cycle 2 at the same time point. I use my massager on both hands and arms whenever I feel tingling in my right thumb, so approximately 2-3 times a day. So far, I haven't developed neuropathy anywhere else.

Treatment Against Cough

I've had this @#$%ing cold since the week of March 1.

I can't get rid of it, because every time it's about to go away, I enter into the phase of my chemo cycle where my white blood cell count heads south and then of course my cold viruses figure the parents are out of the house and it's time to PARTY!

As I figure that I'm going to end up with terrible cold symptoms every 3 weeks until September, I've been doing my best to alleviate the cough and congestion via these techinques, gathered primarily from web research:

1) alternating peppermint tea with a tea made from ginger, lemon, honey, and a couple of shakes of cayenne pepper

2) a few drops of eucalyptus oil in a steaming hot shower

3) wearing a hat, gloves, and socks around the apartment

4) dosing with Nyquil (though I'm going to switch to prescription codeine as soon as I can) at night so that I can quiet the cough enough to sleep

5) drinking liters of water and barley tea

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UPDATE: it's now Day 10 of Cycle 3 -- no more cough!!! It's a miracle! I'm now just crossing my fingers that it won't come back on Day 13, which is when my cough usually got much worse during my first two cycles.