He's back, and sicker than ever! I mean better than ever... yo, dawg.

Hey there,

Noah here (obviously). Long time no see. It's 6:06 right now, and some nurse (actually she's been hella nice, she's a rather rotund African lady named Ester) just woke me up by taking blood samples. I probably have gotten a total of under ten hours shut eye in the last three days. With that I offer a friendly groan “Uggghhh.” I was just informed that I’d be feed in half an hour. Of course “feeding” is some high caloric tofu based vanilla tasting protein shake that is pumped directly into my stomach one can at a time (supposed to have six cans a day). I asked if we could do it now and was rejected. So I have half an hour to kill. Well, with me being up now, I figure I’ll add to the long neglected blog.

So how come it has taken me so long to add an article or two. Just about twenty days overdue, give or take a day. Unfortunately I have no excuses. I’ve been in the hospital, but that has been so boring you’d think I’d be writing hundreds of pages if for nothing else then to kill time. So laziness has been a factor. I can’t say I didn’t have anything to write about. There was Radiation prep and chemo prep (both ruined by my hospital stay). I have had more than a little bit of pain, it was rather distracting, which is why I was in the hospital.

Well I was actually in the hospital for pneumonia. Yeah I wasn't feeling too good for two to three days. In addition to that I almost went to the ER several times. On the second day I had such a high fever I couldn’t stop shaking. I was severely dehydrated and could barely stand. The third morning my mom went out to get a working thermometer and she saw I had a fever of over 103. So we took a fun drive to the Emergency Room. Being a “cancer” patient got me my own room in the ER. The room was hella cold. And they kept taking off my clothes (my mom went to the cafeteria) to listen to this or to feel that (nothing obscene). I believe I took an x-ray, and they found pneumonia. (in the right lung).

So it got really painful, then for the most part better. Eventually (after fourteen days) I was doing more non-pneumonia exercises and stuff testing my swallowing abilities then I was devoting to the pneumonia. Basically a doc would come in, talk for 5 minutes, listen to my breathing, feel my stomach and chest, and tell me we were going to continue with antibiotics and leave. I watched a whole mess of television. Avatar the Last Airbender is a good show, for a completely American “Anime.”

So on the thirteenth day I was so distraught about them saying I was going to stay for another week , after the doctors saying continually that I’d be getting out soon, that my dad went and got some answers to questions I didn’t know I had. I found out that they couldn’t hold me against my will, so once I found that out I let them know I’d be leaving the following day (the fourteenth). That was a debacle in and of itself. But two days later I wasn’t feeling well and, now I’m back in the hospital.

So that’s what’s been going on. I’ll try to keep everyone more informed in the future.

--Noah

P.S. If any artists are working on that peice of art for my arm, please send me an E-Mail (or text message) to let me know. And the size of a cell phone is a ruff estimate. I'm just trying to make it so that all these symbols will fit on my are.

Grilled Cheese Sandwhichs and Tomato Soup

I miss food. I am constantly assaulted with the aroma of cooked goodies. Everywhere I see people eating. So I don't miss food. I am surrounded by food (I bet lots of people in third world nations had that problem). I miss eating.

Before "the cancer" I ate. It was my favorite activity... well it was in the top five. It was what I did with friends, an excuse to see old friends, and a way to bond with new friends. It was something that I could pick up quickly at a little store and eat on my way, or sit down and relax savoring each bite.I could simultaneously be picky and open minded! I enjoyed fine expensive foods; however sometimes nothing hit home like a good ol' hotdog. And San Francisco is the city to be a foodie. You can find most any kind of cuisine here. New York was good, especially for hours open, but I couldn't find as much variety as San Francisco (I could find no pho). In fact I often find myself day dreaming about foods.

So of course I got tongue cancer. I often lament to myself this is the most torturous of cancers that I could get. Now I don't know how painful or embarrassing other cancers are. I know that others tend to be more life threatening. But if I had testicular cancer I might not have any balls, but I could still eat. I'm not sure how that works with colon cancer. Because after eating I tend to use my colon.

However I now can drink. Sort of.Non-alcoholic. As I only have half my tongue I swallow differently. So as I drink I am relearning to swallow. At least that's the plan. Its a lot harder than I thought it would be. And in two or three weeks I've got to start chemo and radiation. The chemo is going to make it even harder to eat, and the radiation will probably change my sense of taste, or possibly even remove it entirely. So I want to get back to eating as fast as possible.

Calling All Artists

Hey all. I just woke up. 3:15 am. God in heaven and earth it’s hard to sleep with this trake installed in me. I wonder, since I have a piece of technology in me, am I technically a cyborg. Indeed I have 2 pieces of tech inside me; a tube that allows food to be directly inserted for digestion (albeit a specific type of food)h I have a trake, and while it is a rather horrible experience, allows me to breath without the use of my mouth or neck.

I also have artwork on my body. Now this is completely unnecessary and narcissistic. It serves no purpose and indeed I got just because I like how it looks and I feel like it adds to me. But that is hardly the point I am attempting to convey. This brings me to my point.

My trake is coming off soon. I dare to hope it will be off this Thursday. It’ll come off and soon enough I’ll start radiation. And everything I thought was horrible up to this point will be pleasant compared to the radiation; from what I have heard about radiation. I may get chemotherapy which is even worse (but I probably won’t get it since my lymph nodes were clear). So since I will be going through a horrible ordeal I’m going to ask a favor from all the artists who read my blog (that’s right, I’m milking it).

I want a small piece of art; less than the size of a cell phone. It can be anything you like. I’d prefer it to be something represents me and my ordeal to you. What you think of. Also it’d if at all possible be tasteful (I hope you don’t think I’m completely loutish and uncouth). Now what I’d like to do is take all this art that is sent to me and try to put it together. Then get that put on my right arm as a tattoo as soon as the radiation and chemo treatments are over.

Now I’m not doing this as a celebration. It also won’t be obtained as a reminder of the situation. I honestly don’t think I’ll ever forget I have half a tongue. It will be purchased as a (hopefully) finite end of that journey. A year after the radiation is the greatest chance of relapse to cancer. The following two years there is a lesser chance of relapse. The following years as long as I don’t smoke at all, chew tobacco, chew a certain south American beetle (the name escapes me), or have a drink more than once in a blue moon I shouldn’t relapse. Of course I was told I shouldn’t have gotten it at all, but that’s neither here nor there.

As usual I digress. Please if it isn’t too much to ask do this little piece of homework. It doesn’t need to be grand. However I would prefer more than stick figures. Also no giant cocks. I hate censorship, especially of art and free speech, but I’m not going to put a dick on my arm (what was that about me not being boorish). It can be colored but that might not be the best idea (as colors change when applied to human skin.

Time for second surgery. Hoping it doesn't hurt too much.

Can't sleep, clowns will eat me.

Its almost two in the morning and I have to be up in about five hours. I'm rather tired and my body feels like it wants to sleep. In fact I am doing that sleepy head bob, where I inadvertently close my eyes and as my head starts to fall forward I jerk it up. I need sleep. However my mind is racing. And falling asleep will be easy, but not restful. The hole in my throat makes keeps me half awake anyway. I'm letting you know this just in case my subsequent ramble makes no sense at all.


So I've been feeling guilty about the cancer. People keep telling me to milk it. Especially my pop; in regards to milking him for what I want that he can afford. However I know cancer is life threatening and all, but I kinda felt like I got "cancer light." I mean it was just a growth on my tongue. Slightly larger then a cold sore. Sure it was painful. And it kept getting more and more painful, but it wasn't like colon cancer or lung cancer or testicular cancer. It hadn't even spread to the limphnodes yet. We thought it did, but after removing them we found out it didn't.

So it was painful, but at no point and time did I feel like my life was in danger. As a matter of fact the after effects of the surgery are worse than the cancer was, so far at least. The cancer was physically painful. The after effects of the operation are also physically painful, although at this point much less, but I feel the over all quality of life has gone down.

I can't shave (well I can shave, but not in any style I like). When I leave the house I either have to have my trake tube showing, or wear a bandanna around my neck. That would work in Texas or Wyoming. But San Francisco isn't too keen on cowboys. Plus it really doesn't go with any of my outfits. And while  moral support from people has been terrific my social life has significantly gone down the drain. The vast majority of my social interaction has been with my parents. And I can tell they're tired of me being grumpy (I really am trying not to be a Scrooge).

With the exception of several people, almost no one seems to want to see me. And with my speech almost incomprehensible its not like I can call people up to say hi (I do text though). I guess I'm just kinda sad that some people whom I thought were close as, if not closer than, family seem to have all but cut me off. Oh they'll say hi online, answer text messages and make a token appearance once or twice in a blue moon. Maybe I remind people of frailty of the human condition. Which is probably harder on my twenty something friends who still want to feel invincibility of youth. But still, it just brings me to almost leper status.

Now I'm not talking about everyone, or anyone particular person(s). And I know I'm not the center of everyone's universe. It would just be nice if I didn't feel like I had to beg to see certain friends. I will admit that there have been some friends who have been more than awesome about seeing me at every chance they have. Kudos to them.

So this blog isn't meant to hurt anyones feelings, make anyone feel guilty, or accuse anyone of wrong doing. It's just a way of trying to release my feelings (which is rather hard for me). So as always I hope everyone is doing awesome. If people like spaghetti and garlic bread (or just want to see me) Shar ZaHav is throwing a dinner in my honor this Friday (I think). If you're interested in going just send me an email for the info (send it to fadingwildcard@gmail.com). You don't have to be Jewish. You don't have to eat (but there will be food).

Alright, well I'm glad to have gotten that all off my chest. Sorry if it was all poorly written, I'm not going to edit this post 'cause I want to go to sleep. It's going to be a long morning tomorrow (probably today when you're reading this). Oh, and for what its worth, surgery again Tuesday. So yet another super happy fun time (due to super happy fun time drugs, along with (please god in which I don't believe in) removal of my trake!

Remeber its not the fall that hurts, its the sudden stop at the end.

Bravery

I've been going over all the letters and emails sent to me and slowly a theme became apparent. A number of people seem to think the same thing about me. Apparently somewhere along the way someone decided to call me "Brave." Now maybe I got my wires crossed but I don't know that I'm brave. Please note I’m not trying to disparage anyone who attempted to honor me with the honor or belief of myself being brave.

Bravery, as I understand it, is not a lack of fear. Fear is good. It’s one of the reasons our species has been kept around. Everyone is afraid of something. Many somethings in fact, in varying degrees. Bravery is standing up to a fear despite the fact that you’re afraid.

As I believe I said before I’m not especially afraid of death. And while I don’t necessarily like it, I’m not afraid of pain. So to say I’m courageous is somewhat incorrect. I didn't see something I was afraid of and then stand up to it. I was in pain (and supposedly dying) and was told this was the only way to get out of pain (and not die as quickly). This was neither brave nor cowardice. It was simply an act of self preservation. And a way for me to have a better quality of life (by no longer being pain).


Some have also called me a hero. This term makes me somewhat uneasy. Once again I did nothing to deserve the title. A hero is someone who puts themselves at some risk (not necessarily physical) to help someone else, or others. I wish I deserved the tittle of  hero. No part of what I've done makes me heroic, as much as I'd want to believe otherwise.

Out of hospital. I have a hole in my throat and am unable to take a proper shower, but at least I'm out of the hospital.

No more draines for that matter.

No more stiches!

Back

Kinda here again. Actually well enough to go online today.Operation seemed to go well. Recovery however, is stagnent and improves too little. It is a torturous affair (though it has gotten better) that makes me regret almost ever waking minute going through with it.

I can barely breath, and the bit I do is through a hole in my neck. This is by far the worst part, albeit the least painful part. I have swollen wounds crisscrossing my mouth, neck and chest. My left arm is in a cast, as if it was broken, making it useless, and typing very hard. Really regretting this.

Although the nurses have been great, as have been parents.

Ready for the operation. Now all thats left to worry about is waking up in a "28 Days Later" senario.

Thank Everyone

Boy howdy. It’s almost time for me to have that operation. I would have to say that I am slightly nervous. Super ready to have the cancerous growth removed. On the flip side of that I will lose at least half my tongue. Not entirely sure how I feel about that. My goal in school was to go back to being a teacher. However while I will be able to talk again, I’ll never be able to fully talk correctly again. I will always have, at the very least, a speech impediment; although my worries were not what I wanted to write about.

 Since the operation is tomorrow, and I’ll be in the hospital for over a week, I wanted to say thank you. I wasn’t too sure how to go about this though. See I want to thank everyone. If you’ve read my blog thank you. If you know me at all you know that I tend to hold my feeling close to my chest. So it has been an unique experience to be able to just put my thoughts out there into the ether that is the internet and allow anyone to see it.

If you were able to give me something, be it a letter, money, good wishes, or even just some positive energy I’ve got to say thank you. I loved getting the letters that I have (both electronic and physical). I know that for the most part I haven’t responded to them, and I apologize. But they have made this process that much more manageable.  So thank you for the letters.

For those who gave me money thank you so much. It has and will make paying for all this, well possible. And I know that right now money is hard to come by. So if you were unable it’s completely understandable. But yeah, just seeing how many people have come out to give me what they gave was more than I thought possible. I never imagined I had so many people backing me up. It Is just an awesome feeling to have so many people in my court.

And if you’ve been able to break off so time to see me that was most definitely appreciated. I know I haven’t been the easiest person to hang around with. Especially with my inability to talk along with my varying levels of grumpiness due too the pain in my mouth. I have had some great times with friends and family and think that was just awesome.

So I’ve just got to say thank you. Everyone has been just fabulous. You’re support is a major reason as to why I am still kicking.

Love,

 --Noah Nacamulli