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

My Surgery on Wednsay.

So today (Friday October 15th) I went to Oakland to take tests and to make sure that everything was set for my massive surgery on Wednesday. This is somewhat worrisome, not just because it’s a potentially ten hours long, but if anything goes wrong then I’m shit out of luck; do not pass go, do not collect $200.

So I thought I would explain to everyone what was going to happen in this operation.  So the majority of the operation is going to take place on the left half of my body. So I should be knocked out by eight in the morning. When they start what they have to do.

So I can’t say I know the order of what they have to do. The doctors are going to cut open my neck and take out the lymph nodes. They’re going to check them to see how advanced the cancer on them are.  They are then going to give me a tracheotomy. That’s where they poke a hole in my neck and put what is essentially a plastic straw in for me to breathe through.

The tongue is going to be a tad more complicated. So they are cut back and peel the skin and lips from the jaw. They’re going to pull out one or two of my bottom front teeth. They will then crack the jaw into two pieces so it will swing open and allow unfettered accesses to my tongue.

With the ease of reaching my tongue they will then go and cut out all the cancer. This is really important, if they miss just one cancer cell then the whole operation is for not. So after cutting approximately half my tongue what happens is somewhat up in the air. If can dental surgeon can make it he (or she) will come in and remove my wisdom teeth (which are very impacted). I the dental surgeon is not available then the two ENT surgeons will continue fixing my tongue by cutting some tissue off of my left wrist to replace the missing tongue. Then they will replace the wrist tissue with thigh tissue.

So that is my Wednesday in a nutshell.

Is you a-feared?

“…oh that’s horrible Noah, you must have been so scared.” “I know what it’s like to be that scared when you first find out; I remember what it is reminiscent of.” “Hasn’t it been so scary, were all praying for you.” “But don’t worry; everything will work out all right.”

Most letters to me begin with people telling me how sorry they are (to hear about the cancer). Then they go on to tell me how scared I must be, or how horrifying it must have been to find out. And almost always they conclude with how everything will be all right. Now don’t get me wrong. I appreciate the hell out of everyone who has written to me. The letters I have gotten have been torches of light in an otherwise bleak and cold tunnel. Indeed there have been some letters that were veritable bonfires of goodwill.

However from the first letter I received, to the most recent one, the first paragraph always tells me how frightened I must be. They never say what I should be terrified of? I assume it’s the possibility of death. But to be honest, death doesn’t scare me that much. I’m not going to search it out, or do something foolish, but I’m not scared of dying. Indeed it is guaranteed that I will die some day. So will you. So will all the soccer moms and teeny boppers who watch twighlight with a passion. And it doesn’t matter whether they follow team Edward or Jacob!

Something I learned when my brother died, by the way he died; that anyone, no matter how healthy they seem can die in the tick between the seconds. On the flip side since I’ve gotten the cancer I’ve been bombarded with stories of people who were told they had a month to live (or some such thing) and then lived for the next million billion years (slight exaggeration). So I guess that leads me to think it isn’t the size of the dog in the fight, it’s the size of the fight in the dog.

Or possibly death isn’t what I should have been scared of. Maybe it was the pain? However was already experiencing pain by the time I got diagnosed. Or at least what I thought at the time was pain. I didn’t know that much about cancer then (truth be told, it hasn’t been explained to me yet, so I still don’t know much more than I did then). Should I be afraid of the unknown? Could it be the lengthy procedures? Perhaps I should have been worried about the long periods of boredom  punctuated only by bouts of pain as my medication wears off to prove that time is actually passing and not just a figment of my imagination? Maybe the people who told me I must have been scared didn’t rightly know what I should have been scared of?

But at least everyone is sure that it’s all gonna be fine and work out. I’m actually also in this boat, so I can’t make too much fun of it. Of course I was also in the now sunken raft of “that thing on my tongue couldn’t be cancer.” But yeah, I’m going through surgery and that’s the big thing. Once that’s over, as long as no cancers cells are left on my tongue I’ll be good to go.

Well after the radiation. It’s going to be the radiation that both sucks and blows. Everything I hear is that the radiation is going to make life hell. There will be temporary problems. Permanent problems are also just short of assured. I guess the one thing I am afraid of is the radiation.

Oh, I couldn't give a shit about that!

Its an uncanny feeling when the doctors in ER know you. So as I said several days ago I've felt better. And the other night so it was two and a half hours after I had "eaten" my dinner and all of a sudden it hits me. I start coughing violently. I couldn't draw in any breath. I see I that earlier I pulled out my garbage in to spit into. It’s lined with a plastic bag, and has lot of tissue. I briefly think to myself “that’ll work” as I attempt to swallow while still coughing so hard I’m tearing.

I make it at just the last tick over the garbage. I hurl brutally into the receptacle.  I taste the chalky vanilla flavored shake mixed heavily with bile. Dark red specks are all around the inside of garbage can, but not mixed in with the throw up.  My mom rushes into the room asking what happened. I attempt to say paper towels, but it come out garbled. My mom hands me tissues and tells me she going to call the “advice nurse.”

She grabs her cell from the living room, and I assume tells my dad, and then comes into my room. She starts calling Kaiser and I shuffle into the bath room. I spit several times into the sink, the spittle being pink with dark red gobs in it. I rinse my mouth out several times. I then brush my teeth.

I get back to my room, and my mom is talking to the advice nurse. I type out answers for the nurse on my phone, which my mother relays to the nurse. Eventually it’s decided that the best course of action is to go to the Emergency Room.  So both my parents accompanied me to the ER. So when we got there it was surprisingly busy.

So I’m going to spare you the long story for the most part.  It was the same Doctor as I had seen the previous time I was at the ER (I tend to average about twice a week). So while he and my parents were talking about what possibly could have brought this around. I typed that it was because I was way too constipated.  But I didn’t have any of the symptoms of constipation (gas, bloating, pain, etc.). So I was paid no heed, something I find is happening more and more in most aspects of my life.

So after the doctor checked everyone else’s suggestions and found everything else more or less satisfactory, he yielded and sent me to get my gut x-rayed. When the x-rays showed up the doctor relented, saying I must know my body because what the x-rays showed was exactly what I’d been saying. So now, on top of everything else going on, I’ve got to un-constipate myself (and it’s not like I haven’t been taking prescription drugs for that).

So for once I found a moral in one of my stories. I guess the moral of this last story is that; well when it gets down to it, I’m full of shit.

Can't wait for the 20th

I 'm just sick and tired of this disease. It's caused all sorts of problems. Just want it to be over. Preferably in a way where I get super powers.

"Hows it going?" turned into a random rant.

I'm getting tired of the questions "How's it going?" or "How are you doing?" or any variation thereof.  It just seems somewhat redundant to ask me that. First off I can only verbally two ways mhmm (yes) or uh-huh (no). So with me being effectively muted by cancer of the mouth, I can't answer that.

So even if this is emailed to me I never know how to answer this. Should I go into a diatribe about how I actually am? Should I just say fine? Making the best of it? None of those are whole truths about how I am; particularly because I am alright in some ways and not fine in other ways. Such as am I in pain? Well I always have some pain, but recently the pain in my mouth has gotten literally unbearable. So I take several painkillers. Well now I am no longer in as much pain, but I can’t think in a straight line.

This has actually become a real problem of late. I’ll take my painkillers, but then I’ll be so out of it I can’t type (or vocalize) my problem. Beyond that when someone asks me a question I’ll often forget it right away. Of drift off to sleep half way through the answer. This becomes a real problem right after I’ve “eaten” (translation: pumped nutritional supplements into my body, often laced with painkillers). Because after I’ve eaten, I can’t lay down for at least a half an hour. So I’ll go online and just chat with friends.

So as I’m IMing (instant messaging) with various friends I’ll lose the ability to concentrate, type, and stay awake for a conversation. Ok well that was my random rant. Thanks for listening. Er… reading.

Welcome new readers. Thanks for staying old readers.

Welcome to all the new readers! So glad you decided t join us. Know that I won't hold back what I have to say because it "might insult" some people. I do try to write the way I'm feeling. Also I want your feed back. Use the comments section. Email me. Email me something that you'd like me to post. As I am against censorship I won't not post something just because it paints me in less than a positive light.

Thank you I hope you enjoy my blog, I hope it gives you something to think about and I'd like to think it'll help at least some of you, in some small way (even if it just kills five minutes to read at work).

Whats in a Name?

You may have not noticed but I changed the name of the blog. I have been thinking of changing it for a while.  The original name “Noah’s Big Battle” indicates just one encounter even if it is massive. And this is most definitely a series of battles. As well as gaining intelligence on the enemies. My big surgery on the twentieth will definitely be the definitive battle of the war. The radiation and chemo after would be the after sweeps clearing the area,’

So going with that logic I changed the name from “Noah’s Big Battle” to “Noah’s Personal War.” Moreover that name sounded true; at least at the outset.  After all cancer is a very private thing. Even those who know about it and know what it’s doing; they don’t know it on an intimate level. For a grouping of cells it certainly feels like a malicious evil army.

Although a personal battle would be me against this “other army” all by myself. And if there is one thing I’m not it’s me being alone. I have a whole contingent of family, friends, congregants of the temple I go to and well wishers.  I knew from the get go I knew I could count on my friends I knew that I could count on them. Even though my friend Mark just had his first son, Jake, I knew I could count on him. Many of my friends have written amazing and thought provoking letters. I was raised with the belief that friends were family that you choose.

Next would be family. I love my mother’s side of the family. And they love me. And I’ll talk in a future blog about their help; especially my grandparents. Now however I’ll talk about my father’s side of the family. I often joke that the family is so big and close that it’s not even a family anymore; it is its own institution. They’ve always been available to help out when ever my family has needed it. People are amazed at the closeness between my father and his cousins.

So for these reasons, and a couple more that I wasn’t able to get into, I took the personal out of the title. As you probably saw or now see. The name of the blog has changed from “Noah’s Big Battle” to the simple, yet seemingly more accurate “Noah’s War.”