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10:03am 19/05/2008
  weat to bed early My aunt pooped her head around the corner coffee is alredydony hot and fresh, and would Iike to get upI slepted well and woke up with some energy. Might be leftover Invigaration from yesterday exersize and streachinhg session, maybe it's a side effect of the oral of thAT THEY HAVE ME ON..

tody: Radiation at 1pm
psychologist at 4 PM
Sundry phonre calls
Hang with my sister and the kids visiting from Portland

Reading "Musicophilia" by Oliver Sacks

PICnI LAST sAT rOCKED!		  
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waiting for Blood and Platelette Transfusious   
02:05pm 08/05/2008
  there is no problem that a little blood can't solve. I'm waiting. Pass some this way.  
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CanI Jas A plan pLRASE!!!!!?????!!!!!!iv   
05:31pm 01/05/2008
  CHEMOMSHOUD HAVE ENDEDNLSASTMNIGHTNERD.MMTHEMIINJSURAJCE coMCCCCCHABGES PLANMAASNLAST MMINUIYT AND NOWMmaimamtyen IntA7 iSHOULDMBE t oppprrunity, but I somrtiredmofmttreatmenrtrs,snd kiving ib rhtrhisnhospoyyal desrtuoyijgbnynsencenofmrime. I WQNT TOMFOMHOME1  
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10:42pm 15/04/2008
  i'S NOW CALLEDD STEMCELL THEREapy BMT id way out of date they csnclone your own cells for the treatmment thry still have to killl theimunemsystem to makemit work. this will be coming for mtesooon.  
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sideeffects   
07:50pm 03/04/2008
  i'm out of stanford as of 5:30 PM. for the last month I've had a Foley Catheter, to deal with bladder weakness resulting from my the neuropathology just last night we removed it to test to see if things were back online and functionioning independently. worked for a little bit although it seems that having a tube in your penis for extended periods of time confuses you sence of if you are peeing or not. They warned me that things would get wacky, turns out that it may feel like you're going to go pee. but what is really about to happen is an epic fart with back fire. call the nurse and the laundry!... Then at 3 AM abdominal pain the like I've never felt before. Call the Crisis nurse for an emergency blader scan. find over 1L full of urine hiding out. danger to the body. Reinsert cathiter quickly. I WILL be shooting insolin for the short term till they get the chemo related steroids out of my system. No one ever said anything about diabedies as side effect.







































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This Friday, Revenant::Fallout Post-Apocalyptic Night!   
04:41pm 01/04/2008
  We've past the end of civilization as we know it, it's time to celebrate! Time to grab your survival gear, road warrior out that old leather jacket, and throw some spikes around your neck.

Survivors converge Friday @ 10 pm! @ the Blue Lagoon		  
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Cuz you have to be there.   
02:59pm 31/03/2008
  My brother and I just had a conversation that turned to the subject of the disintegration of the Gestalt moment. I've been managing a bit of pain lately both in and via body and mind. I now better grasp the futility of expecting the heavy value of of every detail I select for inclusion to be understood with in great depth by everyone else. can you dig it?a  
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The Week In Review   
09:55pm 30/03/2008
  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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hI   
07:38pm 30/03/2008
  Hey you. how it all going? I'm doing well all things considered. Liam suggested I write.  
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siseeffets   
11:42pm 24/03/2008
  received my new cathrater today. My Bladdder remains paralized fucking I'll leave it to your imagination of nwhat its like to get athoritorized, I'TS NOT AS BAD AS YOU MGHT THINJNK,

sOME OF THE THINGS CANCER CAN DO FOR YOU		  
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Ryan come visit   
10:47am 23/03/2008
  Beeen a while what's the atraight dope? Clubs family, HOME. work 831 5888=1740 calllor come visir!  
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WHt if it came withwordsa   
06:59pm 20/03/2008
  iN REPREAEBTATION OF MY tCECLLM LYMPHOMA i'M missing things and trying to filll in the gPAS. MORE WORDS, GOING SUREAL, SORRRY,


IIIIIIIIIIIt+()-+ttttt
iiiiiiiiiiiii&&TTTTT=====cAN i HAS yOUR t CELLLSMORN SOMW STRRONGD DRUGS. I HAS TERW wbcellasmND n reY TO GO! wHAT ABOUTBYOU?lETS NOT MTALK ABOUT STEM CELLSN YET, tHEY ARE A BIBIG MESS AND PRICY.		  
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coming back is hard work   
04:03pm 19/03/2008
  I've got doctors that are often there to answer questions, although they have been taken to task several times. I've got very little control or choice in my own life....therapists scheduled between various doctors, each one has a pretty iintence program for me. (This context leaves me feeling truly and totally incapacitated as an individual) been a long time since I've felt disabled Trips to the clinic to see my attending physicians have, get my Pic Line cleaned up, get blood drawn. (PT, OT apppointns hurrry up and get bettter!) Keeping things scheduled is a lot of work. You said scans would be Monday followed by chemo review! It tutns out that there is a lot that I don't remember from my last chemo review, and this is just a little disturbing to me. I remember saying yes to the principle, but I didn't understand the drugs, and one produced a medical emergency (perhaps it's better to miss those, doctor and family keepy it under control. Right, now I've got A variety of Physical, Occupationa(Today was hard workout with the OT. Now I've got twitchy legs w/ pain and I'm taking Vicodin and it's causeing Anxiety, I went with Vicodiin over Atavan to treat this one, Now waiting for the mellow to kickin.) I've got suppportive family around around me. I had a minibreak down over it all, The therepy, the fact of the disease, the pain with my my mom and aunt in the room. and they both, siad, "Take the pain meds. the process is hard. not your fault. you can only push so far so fast." therapists scheduled between, each one has a pretty iintence program for me. Each one reminds me how imcompacitated I am right now.

it all goes according to plan, thr good doctor will. MRI me early this coming work. Adjust my Chemo, Give me the Drugs and things willl go better that last time. I'm raeady to work what. This morning, I decided, that I need an outlet that I could understND, SO we're back to writing, Although not as cheerey this time.

I'v had some dreams with recuring elemets. Primarily related to an invasive medical procedure, but that was some time ago. I'd like to foster a cheery recurring dream. I've been working on it. But I go to sleep pretty dopped up these days. (Twitches) are back. I hope diner is soon.		  
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BIG TIME HELP!   
05:12pm 17/03/2008
  same rules regarding typing. I got a wheelchair. transfers are are a real bitch! any body out there with a whwele capable car as in a rack to transport the fucker. and skill in transfering a smsll body 5'8' 112 LBS. BETWEEEN. hELP IS NEEDED TO MAKE APPOINTMETNS. SEAN... 831 588-7043. tNK  
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awoke up early....   
05:20am 16/03/2008
  hry all was watchimg DVD alll night then woke up and all inspired. to be evpressive. I've found that I'VE lost all concept of keaboard usage. er're, going tomgo,mwithnyhis. Board. PRHAPS THR EAKFASTWIII RISE SOON,MAND THE DAY CAN GET GOING. i SLEEPT PTETTY ALL NIGHT, so avoided taking my 2 nd sleeping pill. I'm feelimg ptretty clearmheaded thidmmorning. I OUGHT Tobe qeting a new whele chairn today. SOMETHING SMALLER AND MORE MAmuverable, SOM Iget p;aces with help. getting tireed. taking it back tosleeep.

SEAN		  
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Whwere it's going   
10:49pm 11/03/2008
  It is true that i have been slow to update. And things have changed. My cancer took on a new lesss predictable characteristic requiring new lesses predictable treatment options. New chemicals that I am not going to list. one that seriously fucked me up. (serious neuropathology making it hard for me communicate, walk,) anyone who has a long stay in hospital will tell you how much it can fuck you up. the coming and going all the peepingat your Vital Signs. righnow I am on a well earned 3 day holiday from active treatment and resting at home. when I return, It's more testing and drug relevaluation. Right now it's LJ on the sofa and girl scout cookies thin mints and Samoas and minor hallucinations (color swabs.)  
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04:12pm 21/02/2008
  A short explanation of my absence. Reposted...


Thanks for checking in. Sick and alive. Hand cramps and vision problems.
Exhaustion but surprisingly good spirits.

Going to hospital for adjustment in my chemo and general treatment. A good
thing, but naturally a little scary. Will all work out.

..sean		  
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Learning more about how this all works.   
09:32pm 13/02/2008
  Doodeedoodeedoodoodoo... Pain. Let's be real about pain for a moment.

The pattern is that my lymphoma symptoms return at the end of my chemo cycle. I've had myself checked out, no infections found. My numbers (as of Tuesday) are great. Normal while cell count, good hemoglobin and hematocrit, great platelets. Cancer load in both my brain/spine and blood strea mare undetectable. Of course it is obvious that I still have cancer, but still undetectable levels are a positive sign.

Nothing that will interfere with my treatment. Just real a pain extending over my entire body. I've been taking Ibuprofen and Vicodin to minimize symptoms. It works in a hit or miss sort of way. mostly, I need to avoid my primary instinct, to curl up under a nice warm, fever raising blanket and sleep, sleep sleep.

So deal with it kido. This is what lymphoma is like. It's over next Wed as soon as the chemo hits your blood. I'm a junky for a *real* poison.

And FYI... before you get all the worried start replying, "shouldn't that stuff be gone after 2 rounds?" not necessarily .... A twisted advantage for me. I have a aggressive and acute form of lymphoma (strange advantage) plus a doctor I call any day of the week. This means that symptoms can pop up and can be positively identified as quickly as they show themselves. Now the easy way to address my current symptoms would be immediate Chemo, but you can't do Chemo early. Besides, the cancer will not kill in 7 days. In all likely hood, the cancer can't kill me at all. It's the blood stream invading infections that result when you have no immune system and don't go to the doctor that might kill someone like me, but not me because I am a serious bad ass, who does not lose, and knows what he's doing. I added an astonishing will to live to my resume back in December. :-)

It is bothersome to me that the symptoms return, but my doctor says that It's part of my individual cycle. We DO KNOW that the chemo works on my cancer, because within hours of administration, all my symptoms melt compared to what I walk in with. Some symptoms have not returned at all. The Doc says that my symptoms are simply not as severe as what he saw when I was diagnosed. Also, good blood counts can be supported over the course of my whole cycle. I was neutropenic only one or two days this month No troubling signs of mystery infection. Just a nice strong, manageable if painful pattern.

On the BIG plus side I get to thank a good friend for volunteering to give me pain relieving massages. Oh, I so cannot wait!

I'll look forward to Chemo next Wed. Until them, I've got Vicodin, a massage, to provide distraction and pain reduction.		  
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What a difference a day makes   
09:01pm 07/02/2008
  Hospital last night.... by the time I get there and they take my vitals, my fever is gone, never to return. I got out at 3 PM. A total waste of a day. Well, there was one bright spot. The doctor tells me that my spine and brain appear to be free of cancer cells. Woohoo!

After diner, my aunt and I worked on a new eye patch. We keep refining the design under the premise that the more work we put into it, the more likely I will repair and not need it. The problem with previous models was that they need to be tapped down to tightly and had no entertainment value. The current model has wire that molds to my nose for a snug fit. Here's is the result.



What do you think? The eye is attached by Velcro so I can swap it out with whatever. That thing on the top of my head is the Ommaya I was telling you about. A lot of people have stopped pretending not to stare. ;-)

Ophthalmologist tomorrow for an eye exam an a look at the results of my MRI. Then, perhaps a psychiatrist.		  
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Better luck next time, Neutropenic boy.   
12:00am 07/02/2008
  Back in the hospital. Haha (Nelson voice). I've had a low grade fever (99.x) over the last day. Not quite enough to trigger the neutropenic routine. I felt it coming on earlier this evening, but wondered how long I could let it ride. After diner though, I could just tell.

So here I am. They got me a room on the BMT (Bone Marrow Transplant) unit. Thankfully, there will be no such shenanigans for me this week! I'm just visiting. This place is great compared to the last few units I've been on. It's basically a cancer treatment unit like F-Ground, so the staffing is good, the teams are strong and communication with the patient is a priority. Of course, it's the hospital, so some things won't change. You still have to wait for things, but when it arrives, it's organized.

Here's the Neutropenic routine (bedtime version.) Dress and vital sign check. Update history. Blood culture (one draw from each arm = one stick + 1 draw from the PICC.) Blood panel. Urine sample. Stool sample (that's new.) Baseline EKG. Maybe a chest x-ray. Sleeping meds (1 mg Atavan + 10 MG Ambien.) My sleep meds at home are much lighter, but in the hospital, I like a little more. They used to give me just the Ambien, but I lend to wake up confused. Adding the Atavan, really chills me out and lets me sleep all night amidst he clicking, whirling, etc. I'm getting some experience with this all.

Tonight, they are injecting the Atavan, so I should be asleep real soon. Leave me a message on my cell phone if you need to contact me. Nighty-night.		  
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gobo23
 
 
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