Monday, October 19, 2009

Another kind of boring post

Today is officially my 21st day in the hospital and I probably have at least another 2 weeks to go. Bleurgh.

This is the problem with blood cancers: the chemo is supposed to kill your immune system. No immune system means you can't fight off any infection and you are susceptible to everything. So the doctors keep you in the hospital while the immune system is down to keep you from catching whatever crazy virus is running around the community. That translates to about a month in the hospital per chemo session. I already had two weeks in the hospital under my belt before I started chemo, and now I'm one more week down, meaning I have two to three weeks left in here.

Anyone else ready to scream yet?

I had five days of chemo last week, finished on Friday evening. Chemotherapy kills fast-dividing cells, specifically cancer cells, but along the way it also kills off the mucosal linings of your mouth and gut, hair, etc. Right now the chemo is going to work and killing my healthy bone marrow cells and hopefully all those rogue leukemia cells in my gut. Not sure if this round is going to make me bald or not, some chemotherapy drugs are more hair-toxic than others. I know that one drug I got will not make my hair fall out because my hair grew back the last time I had it (yeah, I've done some hard drugs in my day). We aren't sure about the second drug I got, so I will just be surprised in a few days as to what happens. Hair generally falls out Day 14-21 after chemo. If it doesn't fall out this time around, it will definitely come out eventually, it's just a matter of when I get which drug.

Another fun side effect is that everything tastes funny. Everything. Try finding something to eat when nothing appeals to you, and even if you do want to eat something it doesn't taste like it should. Popsicles are my secret weapon. Icy goodness is always refreshing no matter what it tastes like.

Right now I am in the middle of what we call the "nadir," when I literally have no white blood cell count. I'm not even kidding, the lab this morning said I had about 100 WBCs per mm3. A normal person should have 4-10 thousand WBCs per mm3. So imagine you, as a normal person, and how easily you get sick with a normal white count. Now imagine if you didn't have any immune system at all! That is why they keep me in the hospital during this time, and they will let me out again when my white count is on the upswing and I have enough WBCs to protect me from the common cold. The bone marrow is amazingly resilient and will grow back after all the crazy chemo. I just have to be patient and wait for it to get moving and hope I have a boring couple of weeks without any infections.

Sorry for the two boring posts in a row. It's weird blogging for a group of people who are new to how the chemo works. My friends and family who have already been through Rounds 1 and 2 with me know how the chemo cycle works, that it's a short burst of chemo and then a whole lot of waiting around for things to happen, but of course most of you I'm sure have no experience with treatment for AML. The advantage is that I get short little bursts of chemotherapy with generally a pretty immediate response.

OK, ground work is laid, now we all know something about treatment for AML (acute myeloid leukemia - there are several different types of leukemia and no, I do not have "childhood leukemia," that is a different type). More interesting posts coming up, promise!

11 comments:

Monique said...

Mira.... Oh my gosh. I've been so busy with work and my own trivial medical issues lately that I hvent checked up on my favorite bloggers.

My apologies for getting back so late, but I keep sending nothing buy good thoughts and well wishes your way!! I hope you get to watch some baseball in your room :) can you believe there are only a few games left?!?

I'm glad to hear that you're taking everything relatively well and are so so so strong in the process. You really are a tremendously inspiring young woman!

I hope it gets better from here for you!! I'm praying for ya girlie :)

Rose said...

Wow that is dreadfully boring. Please tell me you are doing good reading and watching trashy DVDs. Sending you good thoughts from the Great White North!

shannon said...

Sending lots and lots of good thoughts and vibes your way!

Ksam said...

This post was actually really interesting to me - I spent quite a while working in a cancer unit during my dietetics training and it was my favorite rotation. The large majority of patients in other units didn't give a damn about what we wanted to say, so it was one of the only times where I really felt I was making a difference. On a side note, have you tried using plastic silverware? Since there are so many metals in the chemo, like you said, it leaves a metallic taste and that's just doubled if you use a regular fork or spoon. Adding citrus juices (lime, lemon, orange) to meats and sauces often helps hide it too. And of course there's always the boxed high-protein drinks - they're sort of gross, but at least they allow you to down a high amount of nutrients in a small quantity, which can be helpful when you don't feel like eating. Though since you've been through this twice already, I doubt any of this is new information to you! But the dietitian side of me couldn't help it, it's so important to keep your strength up right now. :)

PS. One question I had - how do you have internet there??

74WIXYgrad said...

I think this is interesting too. And it is encouraging to read a post from you as it shows that you have the strength aand outlook to update your blog.

I appreciate your positive attitude.

Leesa said...

Hey Mira...

It's not boring at all.. To me, it's very interesting.. I mean, to know the details of what you are experiencing and also to know what it is like.. people don't always talk about the details so I think it's good that you are keeping track of them on your blog and letting us know...
I remember once when I complemented you on your beautiful hair... and you told me about your hair (I think we were in Budapest) and you said that before the chemo it was always straight!
I am glad that popsicles are working.. Remember-- popsicles are a form of ice cream.. even if it's minus the "cream" part... at least its icy!!
Hang in there... I know you are probably very stir crazy from your hospital stay and I'm glad to hear that you are in good spirits, besides being bored!!
Take care!!!!
Leese

Mary Community Farm Kitchen said...

I'm holding out for your hair to grow back red this time (if it falls out).

au soleil levant said...

Monique - thanks for all of the good wishes. I hope things get better for you soon too!

Rose - unfortunately I got hooked into getting a terrible book that I wish I hadn't spent money on, and I'm mostly watching reruns of The Office and Seinfeld, sometimes The Nanny or Roseanne depending on how late I'm awake. I disappoint you at every turn!

Shannon - thanks!

Ksam - I have lots of interesting food stories to post, to stay turned. Thanks for the reminder about using citrus to improve flavor. Most of the problem is that there isn't much that appeals to me, and my mouth tastes like I've been sucking on iron rods for weeks on end. Gross. It's funny that all of the stuff on the hospital menu is low fat this and that, when of course the cancer patients actually need all the high fat foods! No (more) weight loss wanted here!

And as far as internet goes, most hospitals have some kind of internet connection available for petients and families. Here they actually have wireless and computers in all the rooms, and they really encourage patients to set up webpages to keep in touch with friends and family. I think it's wonderful. Most people are here for extended stays and the internet offers a small escape and a way to keep in touch.

Cliff - thanks!

Leesa - glad one person likes to hear all the dirt! Yeah, it's funny that my hair changed with chemo. I really hope it stays curly because I definitely don't want to go back to the days of having to straighten it every morning! I'm too lazy now!

Mary - I think that's excellent. Red is definitely better than the blonde I was hoping for last time. Or maybe a real nice shade of audburn? (do you get the reference to that quote?)

Zhu said...

It's not boring at all, it's actually very interesting. Well, I wish this weren't happening to you, obviously, but meanwhile I can't help being fascinated with how strong the body is. Medicine is actually kind of cool.

I know you'd rather be anywhere else (including Alaska and Northern Canada) than at the hospital. But stay strong and focus on the weird little things around you. I'm sure there must be some characters at the hospital, for example...

Two or three weeks will go by fast, don't worry. Sending good vibes to you!

Sinmi said...

hi mira,
i was an assistant last year in creil and though i dont have my own blog, i always found myself reading yours! despite the circumstances, i still continue to enjoy your posts. im in med school now and believe me, the boring classes do end at some point!

also, im going to guess that the reference to a nice shade of auburn is from anne of green gables.

good luck with everything and i am definitely thinking about you, even though we have never met :)

au soleil levant said...

Zhu - you are right, I would definitely rather be camping on the tundra than in here! I do hope the time will pass quickly...

Sinmi - thanks so much for the note. Excellent pickup on the Anne of Green Gables reference. Good luck with medical school, maybe I'll teach you something!