Life after transplant (take 2)
I think that I have mentioned before that my fingernails started to peel, just like the skin on the palms of my hands and the soles of my feet. It is getting to the point that they are getting sore and THAT is because I can't stop picking at them - UGH!!! The peeling itself does not hurt, but when you tear the nail away, like I do, then it tends to hurt...bad, bad!! Here is a pic of what the suckers look like - eewww!!!
Another post-transplant issue that I have mentioned before is that it is taking FOREVER for my hair to come back. I finally started noticing that my eyebrow was growing....yes I said eyebrow, as in singular! My right eyebrow started coming back like crazy last week, leaving the left one in the dust! I took a picture a few days after I noticed it and at that point, it appeared that I had about an eyebrow and a half...LMAO - here is that picture.
And....drum roll please...My hair on my head FINALLY started to grow the other day! Woo Hoo!! It took 64 days post-transplant for me to get peach fuzz with some dark hair and, of course, grey sparklers to grow in. It isn't much, but it is a start and I will take it! I cannot wait until the day when I leave the house hat and/or beanie-free! Summer is coming and I do not want to be wearing hats when it is 110 degrees outside, that's for damn sure! Here is the pic of my itsy-bitsy-teeny-weenie little bit of hair growth...hehehehe
Okay - so it barely looks like a 5 O'clock shadow, but I am over the moon about it! HA!
I have a friend on Facebook that I met through another friend and she too is getting ready to have a transplant. She mentioned that she felt that the doctors were not giving her all the information that she needed...soooo, leave it to me to spill all the gory details. There are two things that I feel strongly about: 1. I think they should prepare you for everything, whether or not it is going to specifically happen to you or not..I feel that you should know. I did not know a LOT and was not ready for a LOT. 2. Everyone is different and just because I say all the things that happened to me, it does NOT mean that it happens to everyone. Some people can have all of it, some of it or even none of it. But, I think being prepared would have made me not so irritated when some things did happen to me. So, I sent her an email that gave her the nitty gritty...some of it is TMI - but you know me, when have I ever held back (well, you may read a certain personal tid bit here that I never mentioned out of sheer embarrassment, but I don't care anymore - it is what happened!) LOL....Here you go....
Okay, so the first thing you want to do is get your doctor/transplant coordinator to get to work on getting you approved for Kepivance. This is the medicine that helps to cut down (but will not prevent) on the mouth sores that you are likely going to get. My coordinator fought with my insurance company for a month before getting it approved. The insurance will say that it is a experimental drug, but it is NOT, it is an FDA approved drug that is for preventative reasons. FIGHT for this drug and fight hard, you will need it. I finally got approved and ended up being allergic to it - go figure! When you get it, you have to have it administered via IV for 3 days before you are admitted and then you have it for 3 days after transplant. I asked my nurse if a lot of people get this drug (because it was 24K for 6 vials) and she said no, most people don't fight the insurance company for it and their sores are worse. I have a pain in the ass HMO and was able to get approved. Okay - now that that is out of the way, here is the nitty gritty of the hospital stay. It will depend on the regimen that they put you on, I had 4 days of TBI (total body irradiation) and then two high doses of chemo, one of etoposide and one of cytoxan...then they did the transplant. It took me 2 days to start feeling tired and on day 3 I threw up...not too bad. I developed rashes on my arms, legs and head that stuck around for about a week and a half I think. You will get diarrhea..and this may be TMI, but whatever you do - DON'T FART!! hahahaha You will shit yourself! Trust me...I did it three times - you would have thought I would have learned after the first one! UGH!!! LMAO Once this starts, they will probably have you crap in a cup so they can test you for C-Diff infection...this is nice and mortifying. Every time you pee, you have to pee in a hat thing so they can measure it. I would just dump mine and write it down every time and tell them. The mouth sores start about a week and a half in and, for me, were the worst part. Not only do they form in your mouth, but they go down your throat. They gave morphine drip plus a pump if I needed it - and I used that sucker! I guess the worst part about the sores is that they have you take pills like 4 times a day and it is hard to swallow...and water hurt my throat. My savior was drinking ensure..I didn't eat for 2 weeks but I drank 4 of these a day and used it to take my pills, which helped A LOT...so if you get the sores (not everyone does) then try the Ensure - it is a great help. Hmmmm what else...Oh, you will be made to take a bath every day and they prepare it for you with antibacterial soap. Then they give you this powder called Nystatin that they tell you to put on your arm pits and groin to reduce infection in your "folds" LOL..I used it like twice in the time I was there...I'm a big rebel...haha Once you have the transplant, you are going to be really really tired so just sleep. BUT, you want to get up and walk at least once a day in order to keep your strength. They would let me out of my room to walk the unit as long as I wore a mask...they actually made me get up and walk. When they do the transplant, you will smell a funky smell that people say is like vegetable soup...warn your visitors because you will smell like this for about 2-3 days. You won't smell it, but they will. Your counts will probably bottom out about 2 days after transplant and then start to rise. They will probably give you neupogen shots for a few days after to boost your WBC's...oh you will have to also do these for about 10 days before you go in. I did mine myself at home, it is pretty easy - tiny little needle in the belly that doesn't hurt at all. I ended up being in the hospital for 20 days and the day of discharge, I cried my friggin eyes out all day long...I was so scared to leave that I didn't know what to do. It took me a couple of days to get over that. They had me come back the next day to be checked and then 3 days later and on the 4th day, they took out my pheresis catheter (the one they will install for your harvesting and use for everything after that) and I was able to leave the hotel by the hospital and come home. Now I go every few weeks to be checked and I am going well. There are after effects that I believe are more related to all the radiation. My nail beds swelled up and now my fingernails are peeling off. The skin on my entire body peeled, even the bottom of my feet and palms of my hands. My feet are still peeling (along with my nails) and they are pretty sensitive. My hair just now started growing - 60 days post transplant. I finally have peach fuzz and some "real hair" mixed in. Lastly (I think) is that I lost my taste buds completely and it took about 5 weeks for my taste to come back. This was something that no one told me and pissed me off...not that I could have prevented it, but I could have been prepared at least - ya know? Now....REMEMBER that everyone is different....you may get all of this, some of this or none of this....This is just the stuff that happened to me. I wish I had someone tell me ahead of time so I was ready. If you have any questions AT ALL...let me know and I will do my best to help. I don't know if you read my blog at all, but I did type it when I was in the hospital and went through the whole transplant process. Here is the link to that entry http://no-surrender-take2.blogspot.com/2011_01_01_archive.html
I don't want to scare you with any of this, I just want you to be prepared. It will go by so fast, you wont believe how quickly 3 weeks can fly. Don't be scared, it really isn't that bad. We have been through lots of crap with chemo, this is just a little longer stay in the hospital and it is our chance to start over...clean slate! You got this mama!!!
Ohhhhh brother, I just re-read that to myself and cannot believe I am posting this stuff. BUT, she (and everyone else getting a transplant) needs to know not to fart, it is just not pretty! LMAO!!! Yes, I am actually laughing right now as I type this junk!
Anyhow, I think that is just about where I am with post-transplant stuff. I did have a low-grade fever last night, went to bed early and feel much better today. I think my head keeps telling my body that I can do a lot more than I can and it is time to just RELAX for a while....so, I guess I will - blah! I see the doctor on Friday, so I will let you all know how my counts look and how I am doing then :o)
Light the Night...
As you all know, I am gung-ho on this Light the Night stuff. I needed something meaningful to help me pass my time and Light the Night was just the ticket. Anyone who reads this knows that we started Team Joni last September and had a short 6 weeks to raise money. We made a phenomenal $4300+ bucks!! Now, I thought that was pretty good, until Monday when I found out that it is pretty damn great! I found out that we actually came in 3rd place in the top fundraising family and friends team! We even got a trophy...how cool is that!!!
This years goal is to raise $10,000 and we are well on our way with already raising $1005.00. On April 10th we are going to have a bake sale at the Run-Through-Redlands, hopefully that will generate some money to add to our team goal. I do not have our booth number yet, but I will post it as soon as I have it. BIG THANK YOU to Allison Waymire for organizing all of the bakers - we couldn't have done it without her, and them! I will also post all of their names as soon as I have them, so we can thank them properly :o)
OMG - a wasp just came flying into the livingroom...eeeekkkk!!! I'm allergic! WHEW, don't worry, I got him with a broom and wasp killer! Go me!
That's it for now...my fingers hurt from all this typing!
xoxo - Joni
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