Masking Tapeworm ([info]gobo23) wrote,
@ 2008-03-30 21:55:00
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The Week In Review
Please be patient with repaet info in this post It'slate and I am done edititing for the night. c my cancer symptoms were back in full force and my treatment was under review. Fevers were High 101.7and were not responding to regular fever reducerrs the skin sores had returned, spreadingsthe first round of chemo was called CHOP and worked like like a charm. eliminated all symptoms twice but it did look like it was going to work a third time I got there on apppt day to get my drugs and they said "no come back on wed." SO I did. The new meeting started poorly and late the first doc not just a messenger. and a poorly informed on at rgat that. he basically told me that the disease was aggressive and I was losing. they had the MRIS and good idea of how rhe ensue the disease through the brain. The next next DOC came in in soon AND was afull AND TALEBTED onchologist and WHO WAS Amuch better INFORMED of thE hopefull what where the the treatment came why it was a good risk how it waould effect me. The upshot I IS THAT im 36 in pretty good enough shapepe sm that the proposws treatment was not simply a re formulation of CHOP. It was the result of highly successfully clinical trial it was a drug protocyocol for teatment of children's imumne systems with dosages reduced to address the needs of an ad adult am with axadifferent a brain and immune function. No guarantee of success but constant monitoring of symptoms and especially Vmy cancer symptoms were back in full force and my treatment was under review. Fevers were High and were not responding to regular treatment the skin sores had returned, the first round round was called CHOP and worked like like a charm. eliminated all symptoms twice but it did look like it was going to work a third time I got there om apppt day to get my drugs and they said "no come back on wed." SO I did. The meeting started poorly amd late the first doc not just a messenger. and a poorly. he basically told me that the disease was aggressive and I was losing. they had the MRIS and good idea of how rhe ensue the disease through the brain. The next next DOC came in This one was a afull onchologist and much better grasp of thr informationand and hopefull what where the the treatment came why it was a good risk how it waould effect me. The upshot Ism that the proposws treatment was not simply a re formulation of CHOP. It was the result of highly sucessfull clinicaltrial it was a drug protocyocol for teatment of children's imumne systems with dosasages reduced ACAto address the needs of an ad adult am with and adifferent a brain and immune hunction. No guarantee of success but constant monitoring of symptoms and especially the neurological ones that were causing so may problems. especially the paralysis and other chemo side effects slight Memory Problems deue tonpainmeds like the pIN KILLERS LIKE the pain killler and antianxiety drugs like Atavavan and memory problems pain killlersing becausy caegivers keeep asking what day it is ant where ai am and aIi am somACetimes wrong.







that were causing so may of problems.



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even more than the side-effects
[info]ashenphoenix
2008-03-31 07:29 am UTC (link)
sometimes the docs can make you crazy! I'm glad it sounds like there's at least one oncologist that knows what they're doing to you. Hope the evil side effects of the pain killers go away when you're off them - it's scary enough to get neuro symptoms from meds *without* already worrying if they're due to the meds or the cancer!
as always, thinking of you and wishing for the best!

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[info]drragonmaker
2008-03-31 08:45 am UTC (link)
*telehugs*
I hope the new treatment works better for you. You have an absolutely awesome attitude about all this.
Keep eating, even if the chemo makes stuff taste funny. It'll keep your body strong enough to handle all this stuff. That's one of the best things you can do for yourself.
Getting someone to take notes on stuff for you might help with the memory problems. A lot of people have memory issues from being stuck in the hospital for a few days (no regular sleep schedule, lots of drugs....), even if they don't have anything else going on. Taking a calendar with you and crossing off the days might help. I can try to find one of those nice German art photo calendars for you if you like :)
I want to say that I think you're a really awesome, creative person and I sincerely appreciate everything you've done for the goth scene in SC. The Box and Fate were often the highlights of my week/month when I was in Cali.
Wish I could give you more than virtual hugs and advice you've probably heard already.

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[info]lizzstar
2008-03-31 01:36 pm UTC (link)
Hey,
Im so glad Laura and Chris went to see you. I had to work and I was sad. I did find out from them that your Aunt lives a block or two from the los altos location of my work :) I usually have a break on mon or tues from 1pm to 3pm. If you would like some company, Im near by and would love to see you! So write back or gimme a call :)
Lizz 408 449 0587

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[info]hektikat
2008-03-31 02:29 pm UTC (link)
Hon, it was very very good to see you last night! I hope my masturbation stories weren't too over the top. It was good to see you smile, and I'll admit, to see your brother blush, tee hee. I'll try to be better behaved next time, um, for the sake of the other patient sharing your room. Sorry, dude. No holds barred when it comes to you. I must share my essence with you :)

We are so about to have a swiss cheese love fest, be forewarned.

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[info]coatcheckgirl
2008-03-31 05:53 pm UTC (link)
Aw Sean, I'm sorry to hear about all of your trials. Thanks for taking the energy and time to let everyone know how you're doing. I wish there were things to say in this situation that weren't big honking cliches but there is a lot of love out there for you.

I hope that someone can get you some stony brownies or something to help increase your appetite - my dad couldn't eat anything with the chemo, then I rolled him a joint and he went to get a hamburger and a milkshake. I'd offer to help myself but I'm incapacitated at the mo as well.

xxoo

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[info]gobo23
2008-03-31 11:13 pm UTC (link)
Thamks for the recognision!

I'm planninng getting a permit for the whole medihemp thing. got buy off from my relelevent care givers. all will be inline soon.

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Cool....
[info]gebbeth
2008-04-01 03:39 am UTC (link)
Cool.... glad to hear you have a good oncologist now and one who researched and found something that is better and on the cutting edge, and NOT just a reformulation. And glad that they are constantly monitoring the symptoms.

And 2nd on thank you for taking the time and energy to let us know how you are doing.

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