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A Different Life
Topic Started: Sep 21 2012, 02:40 PM (557 Views)
Telosan
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The Foremost Intellectual Badass
So I've been meaning to post this for quite some time but keep putting it off for various reasons. First, I was trying to keep it a more private posting, but when I asked Nag, it appears that this forum can't do private threads without creating an entire subforum for my single thread, which is far too much effort. Second, every single time I would sit down to type this, someone else would post a long life story and I didn't want to detract from issue or jump on a sob story bandwagon. Anyway, whatever, here's the story.

Let's start with some background. I mentioned it on the forum before, though I don't recall when or where, but it should be known by quite a few of you that I wear hearing aids. These are intended to counter a 60% loss of hearing on both sides that is supposed to get progressively worse with time (personally, I'd like it to hurry up so I can get one of those cool cochlear implants and hear everything). The hearing loss is the result of nerve damage from either chemotherapy or radiation that I received between 6 months and 2 years of age to fight neuroblastoma of the liver. At the time, 1993-5, neuroblastoma was a relatively rare cancer and the treatments for it were crude, hence my hearing impairment, but it has since become easier to treat.

Now, closer to today, in 2009 I had an odd tumor removed from the intestines that was not neuroblasoma (from which I'm considered cured as it has never been seen again since 1995). This is actually after I joined the forum, I just never mentioned it because whenever I would say that I might be inactive for a time, I would always eventually find a way online. They determined that this tumor was Clear Cell Sarcoma. CCS is incredibly rare; so rare, in fact, that I am the 17th person in the world to ever be diagnosed with it. However, after 2009, we didn't see it again, even with monthly scans.

Skip to even closer to today, in February 2011 the scans revealed another, larger tumor, CCS again, but this time in the liver. This was also operated on in an annoying surgery that took 2/5th of my liver (liver grows back and is already normal size again) but when the surgeon was poking around, he found a few smaller ones that did not show up on the scans. He removed a bunch of these but left a few and advised that we search for a systemic solution. Unfortunately, a cancer with only 17+ diagnoses doesn't really have any special treatment options available, provided you can even find someone who knows what it is. After this surgery we explored clinical trials in the National Institute of Health and settled on an experimental drug that was supposed to boost the immune system's production capabilities as well as modify certain immune cells to target specific triggers present on tumor/cancer cells. The scans showed that this was working beautifully on the tumor we could see, which appeared to be necrotic on the interior with only the outside still active. This went on until Christmastime 2011 when the scans showed another tumor, this time in the lung, which immediately disqualified me from the study. My personal opinion is that I should still have received the drug because it was working perfectly for nearly a full year with no side effects, on the highest dose they've tried, which was double the highest approved for adults. Of course, no one listens to the patient, or me anyway.

Following that Christmas we went straight to surgery in the first week of January 2012 (mind you, all this time I've got college applications going on, January 1st and 2nd having been the deadline for the full list). Lost a bit of liver to take out the mostly dead tumor the drug was working on and poked a hole in my lung to take out the tumor that appeared there. After this, we had a long period of inactivity. While I was being screwed over by midyear reports to my colleges because my teachers were too lazy to grade anything I gave them during my absences, including midterm exams, my parents were arguing about what clinical trial to start next. Their decision is made all the more complicated by the fact that no trial will take someone without "measurable disease", meaning I needed a tumor visible on scans or they wouldn't give me their drug. My oncologist was starting to get worried by the inactivity and brought up the fact that being 18 now, I could make decisions and should be consulted.

So we had a meeting, at which all options were presented to me, including the oncologist's suggestion of Pazopanib, a drug that works by cutting off blood to tumors, essentially starving the cells. I said that sounded fine to me, especially since it's a known treatment of other cancers that mine has been compared to and its a pill rather than multi hour infusion. This was in April, when we decided to do another round of scans. The scans came up to reveal 4 tumors in the liver. While not good, my parents jumped at this chance to completely ignore the solution I already chose and resume clinical trial searching. In July they found a wonderful trial that requested updated scans first, so we did another run of scans.

This set of scans revealed 2 tumors in the left thigh/buttocks, 1 large tumor in the right thigh/buttocks (which explained a pain I'd been complaining of since May whenever I walked), 4 more tumors in the liver to add to the previous 4 from April, 2 tumor in the left lung, and 1 tumor in the right lung.

The number of tumors then disqualified me from that study and we decided to have a meeting again. At this meeting my parents brought up yet another clinical trial that uses Pazopanib and another drug (their test drug) that was supposed to act as an immunity booster and as a Pazopanib-specific effect amplifier. Mind you, I wanted to start Pazopanib 3-4 months prior to this, and you can get it without being on a clinical trial that you may or may not be disqualified from at any given moment.

I hate that clinical trial team. We sent them my records and they told us we could get in and they had 3 seats left for July. We rushed down to the facility in Bethesda, MD the next day for them to tell us that they filled the remaining seats. At home, they said a seat we be becoming available in the middle of August so they promised us we could have it, but my bloodwork was a bit unusual and I'd have to straighten that out first. My oncologist ordered blood transfusions and IV iron infusions, etc to put me a perfect bloodwork numbers and sent us down to MD. In the clinical trial facility, they checked bloodwork and all was fine and they were signing us into the study when WAIT we gave the seat away okay bye have a nice ride home. When we got home, my oncologist almost lost his job when he called down and started screaming at federal medical employees.

So we had another meeting to decide what to do next. All the options are presented to me and again I choose to just take the plain Pazopanib that I can get right from the oncologist's office. There's also a new suggestion the oncologist discovered since the previous meeting: Cryotherapy and Radio-Frequency Ablation. Both are non-invasive surgeries that involve poking a special needle into a specific tumor and freezing or burning the cells to death while the patient is under anesthesia and the entire procedure is CT guided. It seems PERFECT. They're understandably hesitant about the lung tumors as poking holes in balloon-like organs isn't really safe, but otherwise they can theoretically zap all the other 11 tumors. Except they refuse to do more than 1 at a time and I can't go under anesthesia 11 times in so short a period so this would become a multi-month-long ordeal. Still, I'll be giving them a shot while starting the Pazopanib now that I finally got everyone on the same page I've been on.

A scan 2 days ago reveals "new lesions in the lungs" but we haven't heard anything more detailed. This implies more than one and both lungs are affected, but I don't know yet. On Monday I have a blood transfusion and zapping the tumor on the right thigh. This is my highest priority tumor because, not only has it bothered me since May, it has gotten to the point that, yesterday, I couldn't walk anywhere since it would draw tears at the lightest amount of pressure on the leg.

So this is pretty much the explanation for all my absences or reduced activity in the period of time mentioned. I'd still find ways online, my small IC comments and OT posts are far easier to do from a phone than a laptop. Fortunately I can bring laptop most places and sometimes don't have an issue.

For future absences on a much happier note! While at my family reunion this summer, my mom's cousin heard about my interest in Venice and promised me that she would get me there we all thought she was crazy, interviewing me and having competitions to see who can think of the best charity name. Well, in all her craziness, she set this up in the middle of August and the Charity ended on September 16th and she got 20,000$. Other events and auction ideas of hers brings the total to about 30,000$. So the current plan is that, the last 2 weeks of October I'll tour Venice, Florence, and Rome. Venice is supposed to be the whole first week.

Special thanks to Tori, who started a donation pool on her other forum and Porcu who donated personally. Just a little shout-out to them.
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Menhad
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ET2(IDW)
I can't even imagine how much this all must suck.

If you need anything let me know, I can't promise I can do it, but I try my best to help.
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Rhadamanthus
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Legitimist

Good Lord, Telosan. Thank you for posting. Please don't ever feel that you have to justify your absences to us. Do the best you can for your health, and you will be in my thoughts.
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Hastine
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Universi enim hic sumus.
 *  *  *  *  *  *
Holy shit.

I prayed for you just now, dunno if you care... Either way, I really hope you get better. This must be hell. =/

Is there a specific link where I can donate to the charity?
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Porcu
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"Work is the curse of the drinking classes."

Here's the link, though it seems the fundraiser has ended.
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Rhadamanthus
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Legitimist

Telo, there is one forum activity that I must demand from you: after you take your trip to Italy, please tell us about it if you are able to do so!
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New Harumf
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Bloodthirsty Unicorn
Telo, I knew you had issues, but I had no idea . . .

Don't care if you want it or not, but I am praying for you.

Also, enjoy Italy - it's a shame we all can't go with you! :)
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Sedulius
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Field Marshal
Fantastic about Venice, Telo! You'll be able to see the city before it gets far too flooded. My favorite cities in Europe were pretty much Rome and then Venice (and then Amsterdam). Everyone should visit them, but so few seem to! You're in for a treat, good sir!
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Quaon
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A Prince Amoung Men-Shoot First and Ask Questions Later
Telo, you are a really decent dude and while I have not been all that active during your time here I've usually genuinely enjoyed your posts. You are also the only forum member I have met in person and while that day was kind of weird and awkward it was a charming weird and awkward and I genuinely enjoyed it and hope you did as well.

Fuck cancer man. Be strong. I got nothing else to say, except Italy is fucking fantastic and Rome is really one of the best cities in the world if not the best and I hope you enjoy the fuck out of it.
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Telosan
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The Foremost Intellectual Badass
Thanks to everyone, of course. I'm not really good at receiving sympathy and general tend to avoid it; partially why I delayed such a post.

And of course there will be pictures. I need to get some interior shots of my Senate Chambers, since google doesn't want to share. :P
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Telosan
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The Foremost Intellectual Badass
I suppose I will keep everyone updated as things happen. Do people mind, or prefer I don't?

Last week was told I've entered early stage liver failure, which is irreversible and inevitably leads to complete liver failure. This week bloodwork results show that my liver is working better than it has in the past 9 weeks, the data of which was used to determine that liver failure was occurring. Thus, I have no idea if I actually have liver failure, but it seems safest to assume so.
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Rhadamanthus
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Legitimist

Prepare for the worst but hope for the best, Telosan. You are in my thoughts.
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Menhad
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ET2(IDW)
I would prefer to know, you guys are a weird extended family to me.

Stay strong man, I believe in you.
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Allied States of Arv (ASA)
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Consortiums Ministrater
 *  *  *  *
I haven't been on NS long and I don't really know you but I wish you my best and that must really sucks, I know you must get that alot but hope you get better.
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Aelius
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Norman Warlord
:( I can't really think of much else to say that hasn't already been said, but I hope that you're able to improve and live what time you have to the fullest.
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Nag Ehgoeg
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The Devil's Advocate

Telosan
Oct 12 2012, 02:12 PM
I suppose I will keep everyone updated as things happen. Do people mind, or prefer I don't?
You're not shoving your personal life into people's faces dude, this is a thread you set up specifically to talk about you: if people don't want to read it, they won't read it. On the flip side, you have no obligation to tell us anything you don't want to tell us.

Post what you want to post. Don't post what you don't want to post.

I consider it a personal failure on my part that you felt you needed to ask that question, this forum is a safe place where you can tell us as much or as little as you want.

We're all on your side in this.
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New Harumf
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Bloodthirsty Unicorn
If you need a liver transplant I wouldn't be surprised if you couldn't find a lobe or two right here! We are a family. You never have to ask permission to say anything here. Get better - quickly.
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Sedulius
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Field Marshal
New Harumf
Oct 13 2012, 03:26 PM
If you need a liver transplant I wouldn't be surprised if you couldn't find a lobe or two right here! We are a family. You never have to ask permission to say anything here. Get better - quickly.
Ditto. I didn't think liver failure was irreversible. That being the case, you'll have to get a new one, and with all the complications you have other than your liver, you won't be high on the transplant list, and that's putting it nicely.

However, if someone were to volunteer to give you part of their liver, they can't stop them. I'd personally be willing to do this, but we'd have to have compatible blood types. Now, there'd have to be nothing wrong wrong with me, which all recent physicals say there is nothing wrong, but because I lived in Germany from 1993-1996, I'm not allowed to donate blood because of the Mad Cow Disease scare back then. So I don't know if I'd be allowed to help or not, but I will if I can.

I still have never found out my blood type. I think it's A+, but I don't remember. I'll have to find out when I get my next round of blood tests done. I might be able to find out if I can just get a hold of my old military medical records.

I know AB+ is the universal recipient, so if you have that you're lucky, and O- is the universal donor.
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Telosan
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The Foremost Intellectual Badass
Sed
Oct 14 2012, 07:30 AM
New Harumf
Oct 13 2012, 03:26 PM
If you need a liver transplant I wouldn't be surprised if you couldn't find a lobe or two right here! We are a family. You never have to ask permission to say anything here. Get better - quickly.
Ditto. I didn't think liver failure was irreversible. That being the case, you'll have to get a new one, and with all the complications you have other than your liver, you won't be high on the transplant list, and that's putting it nicely.
They've already said from the get-go that my name will never appear on a list to receive a liver. In their, likely correct, perspective, it would be a waste of a valuable organ to transplant one into someone who is already dealing with various other tumors which could easily relocate into the new organ; not that that would need to happen for it to be wasted if one of the other tumors kills me anyway. Plus, a transplant isn't an easy thing. The long, long recovery would put me down for a great portion of time, during which I would continue to weaken and further tumor treatment would be impossible while waiting for the new liver to take. Then there's the issue of constant medication for life to keep the new liver from acting up at any point and, given that everything goes through the liver, my other medications would mess it up.

Blood donations are fine though, but they have to come from direct family members, for reasons I can't remember. Something about rejecting even acceptable blood types... I don't know.

Cheery news all around, eh? :dry:

Also, yes, I'm doing fine with all this news. Everyone else insists I'm in denial or showing off some sort of male bravado by pretending to be nonchalant about the entire thing, but truly, and I haven't been able to convince anyone aside from my mother, I'm fine with the news and only care one way or another because of the ripples it would/is/has made.
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Rhadamanthus
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Legitimist

Male bravado is vastly underrated.
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Tristan da Cunha
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Science and Industry
Hang on for about 10 year and see if they can grow you a liver in a petri dish, using your own genetic material.
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flumes
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CLEVELAND ROCKS!
I'm thinking about you Telo. As for that male bravado, I hear you. I have never been able to convince anyone that I am fine when I really am... People never really seem to get how tough other people can be.

I do not think anyone will mind, but I am sorry for the bump here. My activity on this board has been pathetic lately.
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Telosan
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The Foremost Intellectual Badass
So due to great difficulty sleeping, (i.e. not at all) on top of my multi week long run of constantly interrupted nights, my doctors have FINALLY relented to giving me a sleep med! Yay! Let me relay the results through my perspective first:

Tuesday night I didn't sleep the slightest second and can remember, with glances to the clock, the exact time cars passed the house. That day,of course, I was more tired than usual and with effort managed to convince them to prescribe something for sleep. We picked it up at the local Walgreens and the day tiringly went on. That night I took one pill at 10 and tried to sleep. Around 1130, my doubts of the pill actually working settling in, I finally fell asleep.

What Happened
 
On Wednesday, mom woke me up for breakfast and I complied as I usually do. Since this is her day off, we both usually go back upstairs to our rooms; her's to sleep and mine to play on the interwebs. There I sat, with the occasional interruptions, for most of the day. I went back downstairs again sometime early-mid afternoon to sit with tablet and book(s) in the living room. Laying face up on the couch, my PAACT nurse (RNs who visit the houses of certain patients to check equipment and such.) did what she needed with the pic line in my arm and left. I changed to sitting up and (running time together here) my brother joined us in the living room, followed later by mom's fiance. At one point I was suddenly on the floor and everyone was rushing to pick me up and after being certain I was fine, returned to the couch. Dinner happens, bedtime.


Good story, right?

Well here's what really happened:

What Happened
 
On Wednesday, mom woke me up for breakfast and I complied as I usually do. After which we both went upstairs to our rooms; her's to sleep and mine to play on the interwebs. My brother, at school by this time starts texting me repeatedy.

Are you up? Is mom up?! Answer asap

Emergency! Hello!?

Answer...

[TELO] ANSWER

Annoyed by the texts, I called. No answer (hes in school) so I hang up.

Why'd you call... I said text.

HELLO?! you just called now answer text


Skeeping pill. All bltzurry and xantbsee

Tell mom to check her phone NOW

& tell her to actually respond

SF as still sleepinh

Wake her up! Its emergency

Give me mommenr

Hurry. Phones nearly dead

Shed reading

K... tell her to answer.

So I wake my mom and she goes through my brothers messages. He's trying to fake being sick to come home and has managed to convince the school nurse that he needs to go home. So she leaves to go pick him up but forces me to sit on the bed until she comes back because she doesn't want me falling anywhere. She brings him home and retrieves me from upstairs to sit on the couch. I closed my eyes for a bit and some time later the nurse arrives and goes right through what she has to do but, rather than leaving immediately, she stayed almost an hour. Usually she, my mom, and I will talk for a while on various topics of the week. I just fell asleep moments into into it. In that time, nurse left, mom took brother to doctor and her fiance came home. They woke me up for dinner, to see what I wanted and after translating my mumbles into pasta sat me back on the couch. I fell back to sleep and shortly thereafter off the couch, which scared the crap out of everyone in the room. I stayed mostly awake from then, had dinner and watched TV with mom and fiance. Then off to bed.


See the difference there?! Those are some kickass sleeping meds. They're only letting me take half doses now.
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New Harumf
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Bloodthirsty Unicorn
What the hell meds are they! They sound like something I could use some nights!!
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Nag Ehgoeg
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The Devil's Advocate

They need to put me on some of those.
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