Eureka!

Finally...a drug combo that works! I spent the first day and night after chemo sleeping, but that's way better than heaving over a bucket in the bathroom!

So my new daily medication routine is this:

Every morning, Days 1-2: 1 scoop glutamine (amino acid to prevent neuropathy and help maintain good gut health) mixed in soy milk, 5 pills predinsone (part of the chemo treatment), 1 pill Granisetron (Kytril, for nausea), 1/2 pill Lorazepan (Ativan, for nausea and anxiety), 1 pill Aprepitan (Emend, for nausea), 1 Vitamin D supplement (for good general treatment outcomes), 1 Magnesium Hydrochloride tablet (for constipation) crushed into my cereal milk.

Every morning, Days 3-5: same as Days 1-2 but no Emend, and Kytril and Ativan only as needed

Every morning, Days 6-10: same as Days 3-5 but no prednisone and Ativan only as needed

Every morning, Days 10-22: same as Days 6-10 but no Ativan

Every evening: 3 mg melatonin (for reflux)

Also, as needed: ginger tea, crystallized ginger, hot water bottle (an experiment, seems to help soothe my stomach), propping my bed horizontally

I'm still suffering from almost continuous reflux, which is contributory to nausea but not the same thing. I'd like to know more about upright GERD, as the symptoms seem to be worse first thing in the morning when I get out of bed. It's weird because I would have thought that my stomach would be empty by then. But I always burp a few times and experience reflux anyway.

Supplements

A friend who survived breast cancer recommended taking glutamine preventively for neuropathy. It seems like it could also work for alleviating my digestive issues, which are persisting now through this cycle (Cycle 4) mostly in the form of burping and reflux. http://en.wikipedia.org/wiki/Glutamine. Surprisingly, this wiki article didn't even mention neuropathy. But maybe I'll end up with muscles like Linda Hamilton in Terminator 2, since it's used by bodybuilders to build muscle. And I'll be chuffed if it helps with my memory, since I've had problems with memory all my life.

My nutritionist friend told me that melatonin might help generally against garden-variety reflux and might even have some effect against cancer: http://en.wikipedia.org/wiki/Melatonin. I take 3 mg now before I sleep. It's super-easy to take. The pills are tiny and they melt under my tongue.

I also went to an acupuncturist. She poked some needles in my stomach, gave me 3 bags of round pellets that resemble cat food, and charged me 89 euros. I'm supposed to take 13 pellets at each meal. They are very hard to swallow, and keep getting stuck in my windpipe. I was only able to stick to this for one day; then I lost interest in complying, especially as I didn't notice any dramatic difference in my stomach problems. The acupuncturist also told me that I have a 'cold' disorder, which means that I should only eat hot foods and drink hot drinks. Also, she thinks that I don't ingest enough protein or iron.

The last new treatment add-on is an ayurvedic masseuse. She comes to my apartment once a week and charges about 35 euros for the hour. She doesn't claim that she can do anything about my cancer or side effects, but it's a good way to relax and even meditate a bit.

Wallowing

Today I have this unstoppable need to wallow in my misery. I feel like crap. I can't figure out how to escape this nausea. I worked this morning, because I knew that if I lay down and tried to rest, I would just feel more nauseous. But work was just a series of crises. Everyone is stressed. One person is on vacation. One person just came back from vacation. Things broke down over the weekend. Things are urgently due today that relied on the things that broke down over the weekend. So on top of the nausea, I started to feel anxious. And in the end, I just FUCK IT. I dumped it all on my poor colleague. I said I'd check back in later.

I've always been relatively optimistic. Mostly during this whole ordeal, I've been still there for my friends for their problems. Still doing most of things I like to do. I've been careful to not make any promises I can't keep, and I've been mostly successful in keeping the promises I've made. I feel as though I've been handling it all more or less gracefully.

But today...today...I just have this feeling that I can't take much more of this. Maybe a part of me knew all along this day might come. Which is why I never distributed this blog address to my friends and family. Especially because so many of them are overseas, I think they would only feel helpless when confronted with the negative feelings that are bound to surface from time to time. For them, I try to stay positive in my emails. But for my own sanity, once in a while, I really need to vent my frustrations and my fears.

At this moment, my biggest fear is that I won't be able to go on. It was just during this cycle that I started to have anticipatory nausea. I have about an inch of all-bran cereal left in my cereal box -- a cereal that I used to love. But every time I take it out to finish it off, I am overwhelmed by nausea. The smell of that bran reminds me too much of the brown bagel I ate on my first day of chemo this cycle -- the one that I threw up a few hours later. I had to look away from the carry bag I brought to the chemo room when I yanked out my laptop cable. Even writing about this is starting to make me anxious and nauseous.

I don't feel at all supported by my doctor in this battle. He's happy that the chemo drugs are working; I'm certain that my next full CT scan will show a big improvement. And I should be happy about it too. But instead, I'm having fantasies about not showing up for my 5th chemo treatment. I want to buy a ticket to the French riviera instead. I want to sit on a beach drinking Kir Royal and watching surfers roll in on the waves.

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.

* * * * * * * * * * * * * * * * * * *
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.

Treatment Against Nausea

Nausea's usually one of the worst side effects of chemo, although it seems to affect everyone to a different degree and some not at all. I read that younger women are typically more affected.

The good news is that an array of powerful medications are available for fighting nausea, so if one combination doesn't work, then others can be tried until the right one is found. But in addition to that, there are a lot of other natural ways to fight nausea:

1) Sea bands, which use acupressure and can be found in any drug store in the U.S. I did indeed notice a difference when I put these on, but not enough to give up my anti-emetics.

2) Ginger: candied or raw or cut up into tea with some lemon & honey or in ginger beer (make sure the ingredients list real ginger, rather than ginger flavoring)

3) Marijuana: the indica variety (as opposed to sativa) is supposed to work wonders against nausea, appetite, and vomiting. A friend of a friend, who found the side effects of anti-nausea medications too debilitating, smoked 30-45 minutes before every chemo treatment and as often as needed afterwards. I tried smoking a few tokes around Day 10 after my first chemotherapy, but I didn't like the feeling of lightheadness and dizziness that went along with being high. It reminded me too much of my first few days after chemo.

4) Eating: eat many small meals per day instead of three large meals, eat bland foods, chew slowly, drink lots of water

5) Eating, Part II: make sure you eat, even if you have no interest in eating. Otherwise, the nausea will just get worse.

6) Pills: if the pill taste increases the nausea, try crushing them in food (usually meds that are not slow-release meds may be crushed) or enclosing them in gelcaps you can buy at the pharmacy.

I'm still looking for my nausea magic bullet. I still feel extremely nauseous and vomit-prone on Day 1 of chemo and then progressively less nauseous until Day 10. But my anti-nausea drug regimen -- taking granisetron (kytrol) during Days 1-3 and metoclopram preventively from Days 4-7 -- in addition to following the tips above, have helped a lot.

Fighting Nausea

I'm never hungry anymore, but I think about food all the time.

It's like I'm the worried parent and the sick kid at the same time. I know I have to keep my weight up, so I (the worried parent) plot what I'm going to make for myself (the sick kid) that won't trigger extreme nausea. Planning and preparing the food has become a necessary chore, like brushing my teeth. Usually, once I start eating, the food tastes good. Sometimes it stings a little; they warned me about mouth sores at the hospital. I still need to make an appointment with the cancer-specialized dental hygienist about that.

After a few vomiting episodes over the weekend, despite the strong anti-nausea medication I was taking, I wised up and searched the internet for articles on nausea. It turns out that it's better to eat smaller meals more frequently, eat slowly, not mix hot and cold foods, eat blander foods, and drink ice water. In general, cold food is better than hot. These tips helped a lot.

The nurse at the hospital had also emphasized that I had to be careful not to get trapped in the downward spiral of not eating because of nausea, as that just leads to more nausea, when the stomach continues to contract in expectation of food. She was right. A few times, when I was feeling most nauseous, I forced myself to eat just a small amount of food and felt instantly better.

My staple foods, for the moment, are blueberries and raspberries with muesli mix and soy milk in the morning. A mango later in the morning. Rice porridge with a few add-ins for flavor. I managed to work in some leftover Thai food, although it made me sick the other day, and it was all right. I do worry that, after 6 months of this, I'll never be able to enjoy a blueberry again. But I suppose that's a small price to pay for the honor of calling myself a cancer survivor.

Day 5 of the First Chemo Cycle

The magic of Day 5. This afternoon I forced down my last pills of this cycle and told myself I was "a good girl" since no one else was around to witness the heroic act.

I still feel queasy and tired. I slept almost 12 hours last night. The weird taste in my mouth, like an extra thin layer of alien mucous coating my tongue and cheeks and teeth, is still there. I feel fragile, but that could be a result of staying in bed for almost 3 days and losing 2 kilos.

I had a not-so-ambitious list of things to do, and then proceeded to do even less than what was on the list. I managed to walk to the mail box to send my DVDs back to DVDPost (decided that I could and should watch the ending of Sweeney Todd after my 6 months of treatment are up). I also managed to walk a bit further to the pharmacist, to ask if they had gelcaps to hide the bitter flavor of prednisolone that I dreaded taking every day. The woman and the man behind the desk looked at each other and laughed. I somewhat expected the reaction, but it still hurt. I'll readily admit that the Dutch are tougher than we Americans. If I want easy-to-swallow, nice-tasting medicine, I always look for American brands. Still, I can't help feeling that the Dutch who take the attitude of 'grin and bear it' suffer unnecessarily more than they need to. The chemo treatment is bad enough; I'm going to do everything I can to make it more bearable.

On the way back from that unsuccessful mission, I passed a bakery which smelled delicious. But when I went inside, I found the sights and smells overwhelming and backed out again. Then I tried the chocolaterie. Thankfully, the strong chocolate smell still smelled good and didn't make me queasier. I was thinking that chocolate might be a way to fatten me up again. Ironic: I spent the whole past year trying in vain to lose a few pounds, but I found that the 'accomplishment' of this goal in just a few days time so alarming that I'm now set on trying to reverse the trend. Unfortunately, in my light-headed state, I had managed to leave the apartment without my wallet. So the chocolates are still in the store, but I'll go back shortly to pick them up.

Tonight I have a ticket to see Ojos de Brujos, a ticket that I bought months ago. I plan to go, although I'm not convinced it's a wise idea. I seem to be unusually sensitive to sights and sounds and smells. Usually I like to have background noise, such as iTunes or the television, as I clean up around the apartment or fix a meal. But in the last 2 days, I've preferred quiet indoors. It's nice to hear the birds outside and the shouts of the kids in the neighborhood playing in the park. I noticed on my walk today that some trees have sprouted green. Spring is really here at last.

Sweeney Todd

Very bad choice of a movie to get 1 day after chemo. I may never eat a meat pie again.