Dr. Chowhan calls me and tells me that he spoke to Dr. Dean at the Cleveland clinic and they want me to get started with more Chemo. (ICE: ICE: Ifosfamide, carboplatin, etoposide). This would be 4 days in a roll with a 24 hour pump attached to my port. He said that I would have to start this on a Monday~why not any other day of the week is beyond me~so I can't get started until 11/27. Almost another full week after I see Dr. Dean in Cleveland. He didn't say anything to be about repeating the Bil. bone marrow taps. I hope I don't need them! Anyway, I guess my next post will be after I get back from my consult which will be right before Thanksgiving! Have a nice Thanksgiving you all!
Alan
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4 comments:
Hey Alan
I stumbled into you here from Sarah's blog and I just wanted to leave you a couple of thoughts of encouragement.
1) Like you said in a previous post, not all SCT reactions are the same. My SCT experience was extremely mild in comparison to our girl Sarah's. Granted, it wasn't the best time I've had, but I made it through and I didn't have too many bad side effects. I think the worst of it was a lingering pneumonia afterwards that kept putting me in the hospital. Make sure you walk around a lot when you're in the hospital! Don't be like me!
2) In another one of your earlier posts, you mentioned the percentages on the SCT doing the trick and the percentages on surviving and such. There's one thing you need to get through your head right now - to us SCT'ers, percentages mean nothing anymore. You had around a .22% chance of getting Hodgkin's in the first place. Less than one quarter of one percent. And of that one quarter of one percent, 20% might relapse. Do you see how small our numbers are getting here? As the statistical population shrinks, the effect of each member increases. Heck, we're at such a miniscule amount at this point to where if I keeled over tomorrow, I could probably change the stats to a 90% mortality rate all on my own! :) So don't let the numbers get to you - we're beyond numbers now.
3) You can do this. If you ever need advice or someone to talk to, stop on by my site and send me an email. I can't guarantee that I'll remember all I went through, but I'll do my best to help you out. Also, there's a link on my site and on Sarah's to a Hodgkin's message board we frequent. If you haven't stopped by yet, give it a look. There's a lot of friendly people there and a lot of support.
Take care, and kick some ass!
Alan,
Brian has some good points to ponder
!
See ya soon!
Cathy
Brian, thanks for the advice! Words of encouragement do help and I appreciate it!
I visited your web site and I'm glad you are doing well. Sounds like you've been through a lot.
Sarah has not updated her blog for sometime and I hope she is doing well! You really do get emotionally "drawn in" to one's personal and medical conditions.
I'm going to try my hardest to keep up and not let things get me down. I really want to keep posting in hopes that someone else might find value from what I will be going through really soon. I've gain a lot of information from Sarah.
I'm a big person when it comes to stats so your comments really made me feel much better but I thought there was a bunch of us out there, not the opposite. Thanks again!
Alan
Alan,
It's kind of tricky getting a good feel for how many of us are out there, as not many people write about how well and disease-free they are. You just get us complainers :) Plus, it's one of those kinds of things like when you get a new car and you start to notice that everyone is driving the same car. After a little bit, it seems like everyone's got cancer.
Sarah's been doing better, though still not great. She gave the forum an update at day +16. Being home has helped her out, but she's still having some issues with the GI tract and the radiation recall on her chest. She seems pretty cheery, though she always seems to be in a pretty good mood anyways. Looks like if she's not over the hump yet, she can at least see the top of the hump.
Take care and keep posting! The Hodge newbies need your experience :)
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