links

A fantastic downloadable NPR interview about cancer:
http://www.npr.org/templates/story/story.php?storyId=112563650

Some other good resources:
Cancer is Hilarious blog: http://cancerisnotfunny.blogspot.com/

The Email I Sent to My Friends on October 8

Dear Friends,

I just got my PET/CT scan results from the hospital -- and they were NEGATIVE!!! Which is, of course, really positive. ;-) That means that I don't require any further treatment. No more pills, no more nausea, and I'm finally allowed to leave Holland for a vacation! I just need to go back to the hospital every 3 months for a blood test to make sure that I stay in remission.

Thanks again to you all for the many ways you have shown your encouragement and support. The emails, the Skype chats, the gifts, and the visits were all very much appreciated. Because of these, I can truly say that there were at least as many high points during my treatment as there were low ones!

It's celebration time now, although with the bad cold I have at the moment, I might have to postpone doing anything fun until the weekend. You guys in the Bay Area, this is also a heads up that I've actually managed to arrange a visit back for the first 2 weeks of December. I've had the plane tickets for a while now, but I didn't want to announce my trip until I knew for sure that I wouldn't have to cancel it. I'll send out a separate email soon with some details.

Love,
Me

Over the Hump

I've just passed the halfway mark with my treatments (5 chemos down, 3 to go!). Had a full CT scan last week, which showed that the cancer has not spread and the tumor has shrunk from 8.5 cm to 4.7 cm. To be honest, I was secretly hoping that the doctor would pronounce that a miracle had occurred and that I could stop treatment immediately (or at least use the word "impressive" the way he did after Round 1), so I was just a teensy little bit disappointed. But he said the progress was just as expected and told me to "keep up the good work".

I'm also a little worried that less than half the tumor is gone. I feel as though maybe I could have made up that .2 cm difference by eating less sugar and eating more leafy green vegetables. Looking back on the past few months, I remember cheating quite a bit -- with decadent chocolate cake at L'Angoletto's and garlic ice cream at the Garlic Queen and hot chocolate with real whipped cream and even a shot of sweet liquor in Nijmegen, not to mention many many bars of dark chocolate and sweetened drinks.

The majority of my friends advise me to not deprive myself: it's bad enough that I have cancer. I should try to at least indulge in small pleasures. But in the back of mind there is that nagging thought that this is only a few months of my life. If I can get rid of all the cancer cells via more discipline, then I can enjoy myself later. I really want to avoid radiation therapy if I can. If eliminating sugar from my diet will help me do that, then I should be willing to do that for just 3 more months.

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.

New Things to Try for GERD

Well, I've tried the doctor's ways. Two different kinds of PPIs + metoclopramide, both of which didn't help the nausea and had horrible side effects. I'm still taking the kytril, even though I'm not sure it does anything at all.

Still more research on the net this morning. I think I've probably spent more than 20 hours so far reading up on GERD. Mostly the stories are heartbreaking. There are people who've suffered from GERD for more than 10 years, people who vomit after every meal, people who've had surgery without any relief, people who can't enjoy food at all, people who can't sleep, people who have constant pain and coughing. And it sounds like they've tried everything.

I was almost going to give into this GERD thing, just accept that I'm going to be vomiting occasionally and burping constantly 'til the end of treatment. But reading these accounts has made me even more determined that I have to do something about this right now, before it becomes a chronic condition. It's also made me realize that drugs, even if if they helped in the short-term, are not a long-term solution. The internet is rife with accounts of people who were on PPIs for a while and then they eventually stopped working.

There were a few new treatments I read about. They seemed mostly targeted at relieving heartburn, but I might try them anyway: slippery elm, aloe vera juice, acupuncture, dried papaya spears, chewing non-mint-flavored gum, abdominal exercise to strengthen muscles. I also really need to figure out how to sleep more vertically. I don't have the kind of bed where the head can be raised, and my GERD is not so bad that I'm willing to buy one. But I can add more pillows than the two I'm already using.

The list of foods to avoid are numerous. The ones that will be the hardest for me to give up are chocolate, onions, caffeine, garlic, black pepper.

I also did some reading on the mechanism behind GERD, because no one seems to be able explain how chemotherapy can cause GERD. Not my doctors, not any of the articles I've read so far on the internet. In general, it sounds like it is either caused by the weakening of the esophagal sphincter muscle. However, I also read, interestingly, that normal people may experience as much reflux as GERD patients, but that there is less acid and the level of reflux is generally lower. And this might be mitigated by swallowing and saliva. During chemo, I definitely have noticed that I'm less prone to generating saliva. Dry mouth is a common symptom, I think because the chemo drugs attack the rapidly-dividing mucosa cells of the mouth. I'm also less prone to swallowing, because my saliva tastes so strange to me. Maybe this is the root cause of the GERD.

I have yet to read a satisfying explanation of why some people burp more because of chemo and how burping is related to GERD.