many hospitals say that the first thing a juvenile cancer patient asks for in the hospital is a movie. the problem is, there is often little to no funding to provide entertainment extras.
kidflicks is a terrific organization that provides a movie library of 100 dvd's per hospital. if you have kids and they have "outgrown" their dvd's, or if you're just in the holiday spirit and want to give, purchase a dvd and send it to:
Kid Flicks/Barta
11755 Wilshire Blvd.
Los Angeles, CA 90025 #1450
provide your name and return address so they can send you a thank you/receipt.
i know one of my greatest refuges during this time has been to plop down and forget everything in front of a movie. let's make the same opportunity available to some of our sick kiddos.
more info is available on their website, http://kidflicks.org
Tuesday, December 11, 2007
Thursday, December 6, 2007
Cancer Is Super Sexy
had my 6th treatment yesterday, which was pretty normal, as treatments go. i'm now one of the sick ones who can eat lunch while getting filled with radioactive fluid and blood. yay!
one of the yard supervisors at my work knows that i go directly to treatments on wednesdays, so she packed me a little lunch of lasagna (i love the school's lasagna, i swear) and a chinese chicken salad to take with me. so multicultural. and since they've been sticking my feet instead of my arms, i'm able to eat more easily.
the doctors also came in and talked to me a little bit. since i submit my food logs nightly via e-mail, they've had an up to date record of my nutrition, not to mention how often the food does NOT get digested.
most food i eat leaves my system from one end or another within an hour, so calorically and nutritionally, i am deficient. (i think mentally, too, but they said they weren't "THOSE" kinds of doctors. psh.)
so, despite my pleasantly plump appearance, and the fact that people see me eating pretty normally on a regular basis, i am malnourished. my anemia has not gotten any better, i'm getting two bags of blood a week. and i need to up the calories.
here is a clip of what the doctors sent me in an e-mail last night:
"Foods that might be good to eat are things like ice cream, instant breakfast, protein shakes, whole milk, peanut butter sandwiches, etc. These are things that pack the most calories for the punch, so you may absorb more calories before the food is purged. Also, iron rich foods such as dark leafy greens, lean red meat, and certain folate rich fruits (see attached list for more specifics.)"
they don't want me on an iron supplement because it may cause my digestive system to go the other way on me, and as much as i hate a constant running tap, i'd hate it even more if i were shut down.
also, they think that my body is rejecting the radiation treatment judging by how bad my shakes are getting. i guess it's good that my body recognizes that it's not normal to glow, but if it gets much worse, they may end my treatments early to avoid me ending up in the hospital. they're pretty confident that it wouldn't affect my overall status if they did that, so after next week's treatment we'll reconvene.
one of the yard supervisors at my work knows that i go directly to treatments on wednesdays, so she packed me a little lunch of lasagna (i love the school's lasagna, i swear) and a chinese chicken salad to take with me. so multicultural. and since they've been sticking my feet instead of my arms, i'm able to eat more easily.
the doctors also came in and talked to me a little bit. since i submit my food logs nightly via e-mail, they've had an up to date record of my nutrition, not to mention how often the food does NOT get digested.
most food i eat leaves my system from one end or another within an hour, so calorically and nutritionally, i am deficient. (i think mentally, too, but they said they weren't "THOSE" kinds of doctors. psh.)
so, despite my pleasantly plump appearance, and the fact that people see me eating pretty normally on a regular basis, i am malnourished. my anemia has not gotten any better, i'm getting two bags of blood a week. and i need to up the calories.
here is a clip of what the doctors sent me in an e-mail last night:
"Foods that might be good to eat are things like ice cream, instant breakfast, protein shakes, whole milk, peanut butter sandwiches, etc. These are things that pack the most calories for the punch, so you may absorb more calories before the food is purged. Also, iron rich foods such as dark leafy greens, lean red meat, and certain folate rich fruits (see attached list for more specifics.)"
they don't want me on an iron supplement because it may cause my digestive system to go the other way on me, and as much as i hate a constant running tap, i'd hate it even more if i were shut down.
also, they think that my body is rejecting the radiation treatment judging by how bad my shakes are getting. i guess it's good that my body recognizes that it's not normal to glow, but if it gets much worse, they may end my treatments early to avoid me ending up in the hospital. they're pretty confident that it wouldn't affect my overall status if they did that, so after next week's treatment we'll reconvene.
Thursday, November 29, 2007
Fun Quotes
I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss
My veins are filled, once a week with a Neapolitan carpet cleaner distilled from the Adriatic and I am as bald as an egg. However I still get around and am mean to cats. ~John Cheever, letter to Philip Roth, 10 May 1982, published in The Letters of John Cheever, 1989, concerning his cancer and its treatment
Well even before she was diagnosed with the cancer, I would have said that she was a lot tougher than me and most guys would probably say that about their wives and it's probably true in most cases.
Brett Favre (tee hee, brettfavre.)
Everyone needs to be proactive and know the various warning signs of cancer. Early detection and research to make detection easier at earlier stages, along with the treatments needs, is still a must. I salute all those winning the battle.
Dennis Franz
It costs a lot of money to look this cheap.
Dolly Parton
I feel like I'm fighting a battle when I didn't start a war.
Dolly Parton
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss
My veins are filled, once a week with a Neapolitan carpet cleaner distilled from the Adriatic and I am as bald as an egg. However I still get around and am mean to cats. ~John Cheever, letter to Philip Roth, 10 May 1982, published in The Letters of John Cheever, 1989, concerning his cancer and its treatment
Well even before she was diagnosed with the cancer, I would have said that she was a lot tougher than me and most guys would probably say that about their wives and it's probably true in most cases.
Brett Favre (tee hee, brettfavre.)
Everyone needs to be proactive and know the various warning signs of cancer. Early detection and research to make detection easier at earlier stages, along with the treatments needs, is still a must. I salute all those winning the battle.
Dennis Franz
It costs a lot of money to look this cheap.
Dolly Parton
I feel like I'm fighting a battle when I didn't start a war.
Dolly Parton
Insensitive
had my second transfusion yesterday, 2 bags of blood this time. i have one doctor who wants to put me on procrit, but the fda just came out with something saying that cancer related anemia drugs are more harm than good for a cancer patient.
i was told going into this that there would be a point where i would hit a wall. and i think i've hit it. not only physically, although i feel seasick nearly all of the time and a little over half of what i eat usually pays me back within an hour of consumption.
i'm also losing my hair, the bald patches are getting larger and it's all sort of...thinning.
if i thought i could afford a nice wig, i'd probably cut my hair and invest in one, but so far i've been able to get by with a collection of bandanas, scarves, and beanies.
the problem is, my coworkers can't seem to stop themselves from making fun of said headwear. now, i know i work at an elementary school and none of the staff really ever acts their age, but i don't appreciate being told that i look like a thug, or that dude from the simpsons, or whatever other pleasant metaphor they can dig up on a minutes notice. and they all laugh so snidely afterwards, congratulating themselves on their big joke.
the thing is, my cancer is (and has been) no secret. these people know what i'm going through. and though the fact that i'm an adult and should be able to ignore it has been brought up, it's not easy to be that thick skinned when i'm already going through so much.
i struggle with just how vain i am about my hair. i KNOW it's just hair. i KNOW it will grow back. but each time i look in the mirror and see what this disease has done to my body, i have a total "elephant man" moment and want to isolate myself.
i don't like having to cover my head whenever i go out. and it would be nice if some people could look into themselves and figure out a way to be supportive rather than insensitive.
i was told going into this that there would be a point where i would hit a wall. and i think i've hit it. not only physically, although i feel seasick nearly all of the time and a little over half of what i eat usually pays me back within an hour of consumption.
i'm also losing my hair, the bald patches are getting larger and it's all sort of...thinning.
if i thought i could afford a nice wig, i'd probably cut my hair and invest in one, but so far i've been able to get by with a collection of bandanas, scarves, and beanies.
the problem is, my coworkers can't seem to stop themselves from making fun of said headwear. now, i know i work at an elementary school and none of the staff really ever acts their age, but i don't appreciate being told that i look like a thug, or that dude from the simpsons, or whatever other pleasant metaphor they can dig up on a minutes notice. and they all laugh so snidely afterwards, congratulating themselves on their big joke.
the thing is, my cancer is (and has been) no secret. these people know what i'm going through. and though the fact that i'm an adult and should be able to ignore it has been brought up, it's not easy to be that thick skinned when i'm already going through so much.
i struggle with just how vain i am about my hair. i KNOW it's just hair. i KNOW it will grow back. but each time i look in the mirror and see what this disease has done to my body, i have a total "elephant man" moment and want to isolate myself.
i don't like having to cover my head whenever i go out. and it would be nice if some people could look into themselves and figure out a way to be supportive rather than insensitive.
Monday, November 12, 2007
Sunday, November 11, 2007
How Ya Doing?
i think one of the hardest questions to answer right now is "how are you doing". there are so many responses:
cancerful!
bald!
ever see the pepto bismol commercials?
and of course, the standard answer: tired.
i am very, very tired. all the time.
i began losing hair last week, and noticed it first when i saw a sinkful of this:
thanks, i was using that. TO COVER MY HEAD WITH. this week, i lost some more and i'm left with two bald patches, both in the same spot on the opposite sides of my head:
and to top it off, this week i caught a cold from the little boogers i teach, who have been passing around this virus literally all year long amongst themselves. it makes me a little cranky because, you know, i'm supposed to be taking care of my health and all, and this really sucks. not only am i tired from radiation, i'm tired from a cold.
that's it. i'm wiping all of them down with lysol wipes.
also, i am allergic to the adhesive on band aids and medical tape. it makes for some good times:
they had ghetto-rigged an ace bandage for me, but it bugged me so much i decided just to deal with the bandaid burns. my stepmom bought me some aloe vera gel to use on it, so it's not so bad.
my dad has been really good with checking in with me to see how i'm feeling, and he's noticing things on his own. such as the fact that my appetite comes and goes, or he'll see when i'm tired and suggest i go lay down. little things that aren't pushy, but suggestive.
it's not so bad, i have this long weekend (woooooot! veterans day!) to recover from this cold and then it'll be a short week with the kiddos. then a normal weekend, then an EXTREMELY short week with the kiddos and then it's thanksgiving, followed by the festival of rahnaukkah.
because, you know, instead of one day of presents, i have eight crazy nights.
sometimes i feel really alone as i go through things, because as well meaning as people are, they can still say some hurtful things or notice things that don't make me feel too pretty ("is that a new bald spot?").
but i do have a great support system.
cancerful!
bald!
ever see the pepto bismol commercials?
and of course, the standard answer: tired.
i am very, very tired. all the time.
i began losing hair last week, and noticed it first when i saw a sinkful of this:
thanks, i was using that. TO COVER MY HEAD WITH. this week, i lost some more and i'm left with two bald patches, both in the same spot on the opposite sides of my head:
and to top it off, this week i caught a cold from the little boogers i teach, who have been passing around this virus literally all year long amongst themselves. it makes me a little cranky because, you know, i'm supposed to be taking care of my health and all, and this really sucks. not only am i tired from radiation, i'm tired from a cold.
that's it. i'm wiping all of them down with lysol wipes.
also, i am allergic to the adhesive on band aids and medical tape. it makes for some good times:
they had ghetto-rigged an ace bandage for me, but it bugged me so much i decided just to deal with the bandaid burns. my stepmom bought me some aloe vera gel to use on it, so it's not so bad.
my dad has been really good with checking in with me to see how i'm feeling, and he's noticing things on his own. such as the fact that my appetite comes and goes, or he'll see when i'm tired and suggest i go lay down. little things that aren't pushy, but suggestive.
it's not so bad, i have this long weekend (woooooot! veterans day!) to recover from this cold and then it'll be a short week with the kiddos. then a normal weekend, then an EXTREMELY short week with the kiddos and then it's thanksgiving, followed by the festival of rahnaukkah.
because, you know, instead of one day of presents, i have eight crazy nights.
sometimes i feel really alone as i go through things, because as well meaning as people are, they can still say some hurtful things or notice things that don't make me feel too pretty ("is that a new bald spot?").
but i do have a great support system.
Friday, November 2, 2007
A List of Sorts...
things that were in my purse before radiation:
-wallet
-keys
-checkbook
-extra chapstick
-glucose tablets
-hair thingies
-big ol' pile of spare change
things that are in my purse post-radiation:
-all of the above
-pepto tablets
-tums
-band aids for the iv spot
-wee little bottle of listerine
-crystallized ginger
-peppermint teabags
i need a larger handbag...
-wallet
-keys
-checkbook
-extra chapstick
-glucose tablets
-hair thingies
-big ol' pile of spare change
things that are in my purse post-radiation:
-all of the above
-pepto tablets
-tums
-band aids for the iv spot
-wee little bottle of listerine
-crystallized ginger
-peppermint teabags
i need a larger handbag...
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