[6:32am]
Part of the reason that I can't get back to sleep is because I keep worrying about things. Yes, yes, I'm supposed to be on vacation, but that's never been able to stop me from scrutinize the countless permutations of possible future events. I think I'm quite adept at worrying. :P
So, what am I worrying about?
A bit of background first: When I lost all my hair, I didn't actually lose all of my hair. There are these "baby" hair follicles that don't seem to be effected by the chemo. These are the follicles with really thin and light blond hair. So thin and light, that you wouldn't notice that I actually had hair until you looked really hard.
So, of course, that leads right into the cancer that I'm worried about. And, yes, I know I am hypersensitive about it... but... I've noticed that some of my facial hair started to grow back. I'm getting a stubbly chin with those thick black hairs -- far different than those baby blond follicles. So, in a way, I was OK with the baby follicles not being killed -- they aren't normal hair. But these chin hairs, they are normal hair. I'm supposed to be losing hair, not gaining it!
I'm probably looking waaaaaaay too far into it. But that's what I do. If I had a pet-CT machine in my closet, I'd do a scan every day. Since I don't, then I speculate on whatever I can find.
Then there's the tumor itself. In the brief moments where I can feel it, it seems like I can feel it more recently. Of course, this can mean one of four things:
1:It's all in your head.
2:The tumor is growing.
3:The tumor is the same size, but somehow easier to move (and thus be detected by me).
4:See #1.
Regardless, my faith in ICE has gone down since I last wrote about it. I'm not as optimistic that everything can be done in two cycles. I mean, without a doubt, there still is a tumor there. It sure doesn't seem like a 50% reduction to me. Of course, that could all just be benign tissue. So many variables...
Four cycles *sigh*, I can handle that. At least that'll give us a chance to nag Stanford to do apheresis in tandem with ICE. I just want my re-birthday to come soon.
The other thing I was worrying about was finances and whatnot. First off, withdrawing next semester means that I will lose a semester of financial aid eligibility. So, somehow, when I return to school, I'll have to find the money somewhere. Plus, I've got a huge amount of credit card debt. If I can get rid of that interest somehow, then maybe I can start saving up for that semester without financial aid.
Ugh... then, in the Stanford BMT guide, it says to expect prescription costs of up to $10,000. Neupogen is expensive, I hear.
Of course, through all of this, I have that voice that continually reminds me that there is a possibility I wont even be here in a while. In which case, I feel compelled to rack up more debt and go to Galapagos! But it's true -- it's really hard to think about 20 year repayment plans at a time like this.
These are just some of the thoughts keeping me up.
Saturday, August 23, 2008
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7 comments:
Hey Weird Guy :p
Glad you're going to post your inane ramblings on a regular basis - I check in daily and get worried when you've not updated for a while!!
Your fears/worries are all completely natural - EVERYONE worries about finances and that only has to be multiplied in your situation. And from being on the forum for so long, I know that your fears about hair growth are totally normal - 'irrational' and 'rational' are hard to quanitify in 'normal' cicumstances, but in your situation they take on a whole world of their own.........take a deep breath, accept that you're bound to be anxious with a scan coming up next week (scanxiety) and then go play some more games, drink more beer and eat more meat :p
Hoping sleep improves and look forward to another post by Monday morning!! :)
Take care, Austin............and don't go mad on the old credit card debt - I fully expect you to still be around in 20 years when your credit card people are banging hard on your door!!.......Vx
Hey, don't forget, lots of people end up with a mediastinal mass that's just benign/scar tissue, even though it feels the same size. Fingers crossed that's all it is ... (and waiting impatiently for the pet scan).
That's a good way to look at it. I look forward to the creditors banging on my door in 20 years. :)
Fingers crossed.
The ICE took all your head hair, which the Stanford V was never able to do. Not only that, it cleared even your armpit hair. But instead of thinking about how powerful ICE seems to be by comparison, you worry because you see some fine hairs you did not see before. I think that shows how you are stressed and worried. Which is of course to be expected. As your doctor told you, only the PET/CT scan can make a quantitative measurement of response. He also made it clear that secondary symptoms of chemo have no known relation to the effectiveness of the chemo (yes I know there was a study which showed a small difference regarding amount of hair lost among breast cancer patients). One person can sail through chemo with minimal distress and get great results, and the converse is also possible.
On the other hand, having trouble sleeping is not good. I recall you have some Ativan, wouldn't that help you get to sleep?
It's been my belief that anyone with a mediastinal tumor that large and old is likely to need all the pretreatments, plus the BMT, and possibly even the post-BMT radiation to fully clear it. It just doesn't seem likely to me that you would have enough shrinkage after only two ICE. So I would think you should be prepared for that as being fairly likely. Of course, that is guesswork on my part too and I have had as much medical training as your cat.
It is the UNCERTAINTY of cancer treatment which is the most difficult thing for all of us right now. Thankfully, you know that you can withstand the current treatments with a fair amount of ease, and aside from back problems you are pain free. That is the present, and it is ok. I know you are someone who lives in the future a lot, but right now it might help you to anchor yourself more in the present. Regardless the scan results, you have a long course of treatment ahead of you. The video games, your family, and your loved one are all supporting you and each in their own way are trying to anchor you in the present. In the present, uncertainty is irrelevant, and so anxiety is eased. Philosophically speaking. Or to put it more simply, if we all give you our love and support and help you keep busy, you feel better and don't have to dwell on anxieties.
Of course you're worried - the uncertainty has got to be maddening. I hope your doctors can provide some reassurance. Maybe you should ask them about the hair growth, being able to feel the tumor, etc. It's better to ask and feel reassured than to feel silly about asking. *hugs*
Hi Austin,
Greg again..believe me, I know what it's like to worry..I am a BIG time natural worrier, and I know it's important to you to think through the worry, so feel free to vent here and, you know, get some feedback. I think there are some resources out there to maybe help counsel you on the money issues. My friend Lynn had breast cancer and I volunteered for the Relay for Life event, last year and we played music this year.
Any hoo..there were two nice ladies that worked in the American Cancer Society that offered to help Lynn..but she became withdrawn etc. I can ask them what things may be available for you if you'd like..? I'll leave it up to you..just let me know..they are very much into helping people.
Take care, Greg
Thanks y'all. Just revealing my moment of stress... and blogging certainly helps working through it.
Plus, I think I'm suitably distracted for now :P
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