We finally had good news yesterday. I'm in the trial, I'm getting the drug, and I start on Monday. To prep I've started taking all the recommended supplements, which is a new thing and quite a pain in the ass.
Here's what I need to take daily for the next six months:
glutamine powder - 5g 2-3 times per day
alpha lipoic acid - pill once a day
l carnatine - pill twice a day
claritin - pill once a day
tea tree oil - apply to nail beds on fingers and toes at least twice a day
The glutamine is the hardest - it's a flavorless powder and so I need to stir it into things. I tried smoothies, but something about it turned the smoothie into gloppy pudding. The flavor was fine, but if I'm feeling nauseated there's no way I'm getting that texture down. I played around with the other ingredients and it just got grosser every time. I've found that it goes great stirred into creamy vegetable soups so I stocked up on a few of the boxed ones at Trader Joe's, and asked Elise to make some of her curried carrot soup which is an old favorite of mine for my freezer. But I can't eat soup three times a day.
So I've been experimenting with stirring it into yogurt. Nonfat was disgusting. Like eating sand. Lowfat seems to be OK though, there's enough slip that it still feels gritty on my teeth, but not on my tongue. It's livable.
Tonight I'm going to try making a batch of sugar-free pudding using low fat milk with it mixed in. I'm hoping that it will just disappear into that, and I can make little dessert cups for myself.
Why all the glutamine? Neuropathy (loss of feeling and/or pins-and-needles sensation) in fingers and toes is a standard side effect of taxol. And it can be permanent. This is one of those they-don't-know-why-it-works, but they know it does kind of things. Ideas for other things I can stir this stuff into would be greatly appreciated.
The other two pills are supposed to help with digestive and nausea issues. The claritin is because (shockingly, I know!) I'll be pumping poison directly into my body and am likely to have a histamine reaction to it. They give you benedryl and steroids in the mix too, but advise staying on claritin to help keep reactions down across the board.
Tea tree oil because I'm very likely to lose my finger and toe nails. It's an antibacterial and antifungal oil. I've actually been using it for years - waaaaaaay before anybody else I knew had heard of it we were using it in electrology school as an after treatment to prevent inflammation and infection, and it's the best zit killer I know. It has a very strong, distinctive smell. I've learned to like it over the years, but a lot of people don't. Anyway, if it helps me keep my nails longer, I'm all in favor. As the surgeon pointed out - it's going to be really difficult to do things like button up a shirt if I don't have them. I suggest not googling taxol and fingernails.
Other stuff I've been told to keep on hand - a thermometer (anything over 100 degrees is an extremely high fever for the next six months, and possible cause for hospitalization), a 10-day supply of antibiotics to be carried 24/7 in case I do get that fever. Stuff to make you poop as well as stuff to make you stop, because apparently this is going to entirely change my system but there's no way to predict in which direction. Two different anti-nausea medications, a light one if I want to try to stay awake, a heavier one if I just need to sleep it off. And a numbing skin cream to put on top of my port before they stick me. And valium. And vicodin.
I bought one of those days-of-the-week pill boxes that has multiple compartments for each day and a pill cutter to carry in my purse. I am a walking pharmaceutical nightmare.
I've been told to expect to be at Stanford from 9am to at least 7pm on Monday. I'm actually taking part in two different studies. The first just consists of a blood draw that they will do along with everything else - they are trying to match protein markers in blood to different symptoms they can see in x-rays, PET scans, and MRIs, in the hopes that they can develop blood tests for cancer sooner. Then there's this six hour thing I need to do as a one-off to start the study - which involves drawing blood several times over those six hours and I think another ultrasound. Then I'll get my first actual chemo treatment, which should take about four hours. And then they give me the magic pill and watch me take it. And then I get to go home.
Mostly it's going to be time spent sitting in reasonably comfortable recliners while people push things in or pull things out through the port in my chest. Note to self: wear a v-neck. Bob's coming with me and we'll both bring our laptops. They have good wi-fi throughout the hospital and clinics. He's got essays to write for school, and I can work if I feel like it, or watch trashy television on itunes, or take a nap. We'll see how it goes.
Here's what I need to take daily for the next six months:
glutamine powder - 5g 2-3 times per day
alpha lipoic acid - pill once a day
l carnatine - pill twice a day
claritin - pill once a day
tea tree oil - apply to nail beds on fingers and toes at least twice a day
The glutamine is the hardest - it's a flavorless powder and so I need to stir it into things. I tried smoothies, but something about it turned the smoothie into gloppy pudding. The flavor was fine, but if I'm feeling nauseated there's no way I'm getting that texture down. I played around with the other ingredients and it just got grosser every time. I've found that it goes great stirred into creamy vegetable soups so I stocked up on a few of the boxed ones at Trader Joe's, and asked Elise to make some of her curried carrot soup which is an old favorite of mine for my freezer. But I can't eat soup three times a day.
So I've been experimenting with stirring it into yogurt. Nonfat was disgusting. Like eating sand. Lowfat seems to be OK though, there's enough slip that it still feels gritty on my teeth, but not on my tongue. It's livable.
Tonight I'm going to try making a batch of sugar-free pudding using low fat milk with it mixed in. I'm hoping that it will just disappear into that, and I can make little dessert cups for myself.
Why all the glutamine? Neuropathy (loss of feeling and/or pins-and-needles sensation) in fingers and toes is a standard side effect of taxol. And it can be permanent. This is one of those they-don't-know-why-it-works, but they know it does kind of things. Ideas for other things I can stir this stuff into would be greatly appreciated.
The other two pills are supposed to help with digestive and nausea issues. The claritin is because (shockingly, I know!) I'll be pumping poison directly into my body and am likely to have a histamine reaction to it. They give you benedryl and steroids in the mix too, but advise staying on claritin to help keep reactions down across the board.
Tea tree oil because I'm very likely to lose my finger and toe nails. It's an antibacterial and antifungal oil. I've actually been using it for years - waaaaaaay before anybody else I knew had heard of it we were using it in electrology school as an after treatment to prevent inflammation and infection, and it's the best zit killer I know. It has a very strong, distinctive smell. I've learned to like it over the years, but a lot of people don't. Anyway, if it helps me keep my nails longer, I'm all in favor. As the surgeon pointed out - it's going to be really difficult to do things like button up a shirt if I don't have them. I suggest not googling taxol and fingernails.
Other stuff I've been told to keep on hand - a thermometer (anything over 100 degrees is an extremely high fever for the next six months, and possible cause for hospitalization), a 10-day supply of antibiotics to be carried 24/7 in case I do get that fever. Stuff to make you poop as well as stuff to make you stop, because apparently this is going to entirely change my system but there's no way to predict in which direction. Two different anti-nausea medications, a light one if I want to try to stay awake, a heavier one if I just need to sleep it off. And a numbing skin cream to put on top of my port before they stick me. And valium. And vicodin.
I bought one of those days-of-the-week pill boxes that has multiple compartments for each day and a pill cutter to carry in my purse. I am a walking pharmaceutical nightmare.
I've been told to expect to be at Stanford from 9am to at least 7pm on Monday. I'm actually taking part in two different studies. The first just consists of a blood draw that they will do along with everything else - they are trying to match protein markers in blood to different symptoms they can see in x-rays, PET scans, and MRIs, in the hopes that they can develop blood tests for cancer sooner. Then there's this six hour thing I need to do as a one-off to start the study - which involves drawing blood several times over those six hours and I think another ultrasound. Then I'll get my first actual chemo treatment, which should take about four hours. And then they give me the magic pill and watch me take it. And then I get to go home.
Mostly it's going to be time spent sitting in reasonably comfortable recliners while people push things in or pull things out through the port in my chest. Note to self: wear a v-neck. Bob's coming with me and we'll both bring our laptops. They have good wi-fi throughout the hospital and clinics. He's got essays to write for school, and I can work if I feel like it, or watch trashy television on itunes, or take a nap. We'll see how it goes.
When I was living in San Jose, I was going to an acupuncturist who thought a lot of my problems (my migraines weren't really a problem then, I started going because my menstrual cramps were out of control and lasting like 4 days) were because I was so underweight, so she had me take this like, medical food supplement. It was a gross tasteless powder and had like a zillion calories. She suggested I buy the chocolate chai mix from Trader Joe's, and mix the powder with that and hot water and drink it like a tea. The hot water made the powder texture undetectable, and it tasted amazing!
ReplyDeleteGood call, I'll try this. :)
ReplyDelete