Wow. Lots of questions. I spent most of the day writing answers.
Here you go.
FROM SIS #1
1. Describe what is involved with the actual transplant day. (I keep getting people asking about "the operation." (not). Oh and the smell. (Tho of course, all I could smell was the inside of the mask).
No operation. My brother's cells were frozen. But basically it was like having a blood transfusion. The cells were the color of strawberry margarita. They split them into six small bags and hooked them up. They made me suck on a peppermint to get rid of the metallic taste that you get. And all I really had was this horrible tickle in the back of my throat that made me cough like crazy.
The smell, apparently, comes from what the preservative they use to store the cells. Some say it smells like creamed corn or tomato soup. Others say garlic. I can't smell it, but all the nurses know that you've had a transplant by the smell.
After that I took a snooze.
2. What is the question you get asked the most often?
"How are you feeling today?" is probably tied with "Is there anything that I can help out with?"
3. What is some things involved with the transplant stuff that would surprise people? What surprised you, if anything?
If your donor has a different blood type, when your cells engraft, your blood type changes to theirs. Radiation makes you sterile (hey, if I want more, I'll adopt). When you are discharged you will have months of appointments near daily. It's like a full time job.
I was surprised at how painful the mouth sores are. It's like when you bite the inside of your cheek except that it's all on the inside of your mouth. That and my lips are numb.
FROM DAWN @ LAWBRAT
"What is your favorite color?"
I like them all. But yes. Pink.
FROM NIKKI @ SWLF
1. What's your favorite color
2. How many different medicines do you take each day.
3. Of those how many go through your oh so cool triple CVS line (that my friends is the device implanted right under her collar bone where she received her stem cells)
4. Do you hate being weighed every day
5. Could you get Sis #1 to do a dance video for us.
6. Did you unpack yet.
1. My favorite color is rainbow.
2. I honestly don't even know anymore how many medicines I take. When I was out of the hospital, I took 17 different medications every day.
3. I don't know what goes in my line. Right now there are 9 bags of stuff hanging on my IV tower. I do know that one is fluids. And one of the other ones is called Tacrolimus, an anti-rejection drug.
4. I hate being weighed every day. I am one of those people that just don't ever really weigh myself. When I go to the doctor, I used to ask that they just tell me if I gained or lost weight. Mostly I hate it because they weigh you at 4am. They do this to ensure that you didn't gain some crazy amount of weight overnight and that you aren't retaining fluids. The doctors round early, so they weigh you early. Since they take vitals every four hours, they just weigh you at the 4am check.
5. I would love Sis #1 to do a dance video. She's hilarious. Although she would never do that in a milliondy bazilliondy years. Wonder if peer pressure would work?
6. Yes. I'm unpacked. Sis #1 came in and did a white tornado on my room. If you are going to be in a hospital room, this would be it. It's actually a really nice room. Especially now that I have my own art gallery.
FROM THE SARCASTIC JOURNALIST @ SHENUTS
Do suckers help for the mouth sores???
I would say my big question is if you have met any truly bitchy/catty/bad/ people while there, or are most of them nice??
Also, is there anything that I can bring you?
I'm not sure about the suckers. I would think that it would irritate them as the inside of your mouth is really raw.
I haven't met any bitchy people here. I did have one smartass nurse that kind of worked my nerves, but generally everyone could not be any nicer. I have noticed that there are many employees at MD Anderson that have been here for a long time - one nurse has been here 30 years. That is really important to me because it means that they like their jobs. And that they are good at them. I know that most of the people here are some of the most compassionate people in the world. You would have to be to work with cancer patients and deal with some of the horrors here. I may complain a bit about them, but they really do care about you and want you to beat your cancer.
As far as bringing me anything, just bring me some pics of your cute little kids. Since I'm on dial up, I don't look at many photos.
FROM TRACI
Goofy or Pluto??!!!
I don't remember which one, but it's the one that doesn't talk.
FROM M_D
- What is your favorite song? By whom?
- If you could create a new species of animal, using any parts of any animal, what would you create and what would it look like?
-Can bunnies physically hop backwards?
"I Belong to You" by Lenny Kravitz
I don't know about new species, but I would love to create a dog that doesn't get too smelly and doesn't have the desire to roll around in poop right after you give it a bath.
Don't know about the bunnies, but that would be really funny looking.
FROM ECLECTIC @ ECLECTIC AND MULTI
My question: Do you read to Zoe over the phone or does she read to you?
Did you sleep well and are you having a good morning??
Zoez isn't into the phone. Usually when I call it's "himommybyemommygoingtoplaynow." But I miss reading to her the most.
Unfortunately I did not sleep well. I have a rash now, which looks like a sunburn, from the radiation. They had to give me Benadryl because it itched. I don't sleep well on medication.
I started off having kind of a crap morning as I was in some major pain. Two Darvon later and I'm having a better day. I have to say though that I truly hate pain meds. I want to remain coherent. They offered me morphine, but I'm afraid of that.
FROM MARTHA @ MOSQUITO
What is wedding soup?
If your mouth sores were animals what kind of animals would they be? And what would you do to/with them?
Wedding soup is this delicious soup with meatballs (like chicken or something) from the Grotto restaurant on Westheimer and 610. It's got lots of veggies in it and a broth that isn't too salty. It just makes you feel great when you eat it. They serve it with lots of yummy fresh bread too.
If my mouth sores were animals, they would be rat bastards. And I think I'd make them get this chemo so they could feel what it's like to have the inside of their mouths basically peel off.
FROM AMG
Do they let you wear shoes on your walks?
Are you visualizing your Bro's cells moving into their new place and expanding, dividing and growing to fill in the empty spaces in the same way that you are visualizing unpacking your stuff when you get to your new apartment?
I didn't really even bring any shoes. Mostly genie slippers and my trusty moon/stars slippers Paige gave me with Round One of my chemo. I miss my high heels as they make me well over 6 foot when I wear them. But because I have such low counts all the time, I haven't worn them in months. I don't wear them because I'd be afraid I'd feel weak or something and pull a falling off your shoe move. Not good on the ankles.
I haven't really visualized those cells yet, but you've motivated me to think on that tonight. Other than the rash and the mouth sores, I feel pretty strong. Bro #1 is a strong dude, so I know it's from him. Makes it easier to get well when you don't feel weak.
FROM PHILOSOPHICAL KAREN @ KB PHILOSOPHY
When you're at home and doing your own cleaning, what brand of toilet cleaner do you use?
Heh. When I *was* at my apartment, I had scrimped and saved on my budget so I could get a weekly housekeeper to do that for me. Although our toilet is always clean. When I did it myself, I used this lysol product. My pottie is so sparkly.
FROM GRACE AND LISABETH @ SWLF
Do you like bubble gum?
Hi Grace! Yes. I like bubble gum. But I usually only chew sugar free. I like the kind that you can blow big bubbles with. Usually grape, orange or regular flavor. I think the kind was Hubba Bubba.
When I was your age, we used to go to the minor league baseball games with my dad when we lived in Alaska. We'd get these foot long bubble gum sticks. We used to eat the whole stick. I probably would choke now if I ever tried that.
Oh I can ask this question if Shoshie was for sale and the price was a dollar would you buy her?
Absolutely. I'd even buy her for $1.25 if I had to.
FROM KRISTIN @ ISLAYGIRL
can shoshie come and tutor me?
Sure. I just bought her for a dollar.
Posted by debutaunt at March 1, 2006 03:09 PM