After two weeks of having guests come over and visiting me I come with some rules..., well not rules, more guidelines about coming to see me. Hoping these help facilitate a better experience for you. If not, then hopefully it will give you insight into how I am doing.
Rule the First: I am not here to entertain you.
So don't expect me to. I will be happy to converse with you.Watch TV with you. Possibly even play a board game with you. We can do things together and that is fine. But if your board I am not going to go out of my way to be more entertaining. This also means if I need to sleep, I'm going to go to bed. I get drained easily and you must respect that if I need to lie down, I am going to lie down.
Rule the Second: You must be paiteint when I speak, For I must type to Converse
This seems obvious but you'd be surprised. Especially when I'm in a room with several people or multiple conversations going on. I can only type so fast, so often by the time I finish a thought the conversation has moved, often is drastic and mind boggling ways.
Rule the Third: Don't Hide your Emotions:
Your here to celebrate my life with me.But also to morn the years I wont be able to groove with you. So if you need to cry that's fine. If you want to smile and joke, thats right up my ally. If your angry and want to punch me, tha'ts assault, and I'd prefer you didn't. But we can discuss where that anger comes from and what its really about...
Also don't be embarrassed about asking questions. I'm not embarrassed about answering them. Any thing I can do to help I'll do. No subject is off limits. And I promise to answer honestly.
Rule the Fourth: Don't mind my things; ie noises, coughing, feeding, flem, spitting and meds
In polite society we try not to cough or sneeze around others.We discretely fix blemishes and blow our noses. We eat in small bites chew small bits and don't talk with our mouth full. Now I've never been in "polite society" but I often try to be polite. I am now cursed to fail at that. Noises abound from the whole in my neck. Sounds man is not meant to hear nor make. From the neck hole also comes coughs that produce copious amounts of Flem and mucus.The pain I have when I swallow means I often have an abundance of saliva. So I often go and run to the bath room to spit. When that is unavailable I spit in the living room trash can. If I'm outside I spit on the ground. Also, sometimes I close my eyes when we are talking or if a group is talking. This has nothing to do with how tired I am. It helps me focus. It helps me really get to know what people are saying. Closing my eyes has almost nothing to do with how tired I am.
Rule the Sixth: You Don't Need to Bring me Gifts
Fairly self explanatory. You can (as long as it isn't a book). And I'll try to enjoy it as long as I can. But since that won't be too long, you may want to save your money. No their is one key exception to that, I am still waiting for art to come in. Tattoos were the ONE thing he said I could still do. That being said I don't think I'd make it to the tattoo shop, but letters and self made Art really make me feel tons better.
Now I'm sure these guidelines don't cover everything. I'm sure I could have added more or less. But no matter what I put down something would be missing. All I really want to say is Thank You those who've come to visit me, Thank You to those who've wrote to me, and Thank You for reading my Blog. I hope to see or here from you soon.
Monday, February 28
Wednesday, February 23
FAQ and S
I've been trying to write this for days. Sickness and tiredness have taken there toll on me. As have seeing so many people everyday (although it's been great seeing so many people). Just saying sorry it took so long. Ok well I promised to give out a frequently asked questions with the last post. Well I haven't gotten many questions. So we will include statements. So this is a FAQS; Frequently Asked Questions and Statements!
Q) Who is your nasty friend?
A) I'm not telling, except to that person if he asks. I'll give you that much of a clue. I've also learned since then of some heavy stuff going around him, so I don't want to burden him with guilt. And I understand that this may be his reaction to seeing mortality in me.
Q) Noah are you looking for books? You should read *blank* book. Noah read this.
A) I'm not sure how I feel about books now. I've always loved to read so I've spent a lot of time reading. But being on my last few legs now, I almost feel that reading is a waste of time. However that is kind of a cop out answer. I waste time with TV, and that is much less beatifically than reading. It may also have to do with all the religious, holistic, new agy stuff people want me to read. Its not really my cup of tea. And I'm not even feeling like reading books that are my cup of tea. So I guess I'm saying don't need to be offered books to read. As I'm not really doing more than glancing at books I have.
Q)How can I help? What can I do?
A) If you are in or near San Francisco try to visit me. If you aren't near SF send me an email, although I'm notoriously bad at writing back to you. If your feeling like you have some extra money you can mail me a card, snail mail style. That's really all I want and need. Well that you can do. If someone is a doctor and feels like removing this trake, I would be ever so grateful. My parents may want some break time so if you know them feel free to call to watch me and let them go out or stay in and sleep.
Q) How are you feeling?
A) Alright. If you want me to get more specific I will, but I'm always gonna be alright because I know that a week from now I'll be worse and a week from then I'll be worse and so on until a week from then I'll be dead. I hate to be candid like that, but its only going to get worse from here.
Q) Why do you hate the tracheotomy so much?
A) I don't know, I just do. Its annoying. I'm always coughing up Flem. It is hard to disguise if I want to go out. It makes talking, which is possible just painful, impossible. It makes drinking impossible. I cant turn my head as much as I could before. It screams to everyone that this guy has a problem, which is not the business of strangers on the street. Because of that I stay indoors slightly more than I would have otherwise. And the flemy discharge gets all over my chest and neck, often when I am sleeping. I hate the Trake more than the cancer, and that is saying quite a lot, because the cancer brings me new and exotic pains almost daily.
Q) Are you angry/sad/depressed/etc.?
A) I'd like to think that I'm not angry or sad or depressed. But I'm can't. Every now and again when I scratch the surface I find anger and sadness. Mostly because I was a capable self-sufficient man, and now what can I do. Getting out of bed is almost an ordeal. Going to the bathroom is an ordeal (generally one that should be celebrated). I had energy and could lift things that needed lifting, and I had focus and could write "whatever" and generally get an A in school. I guess this is dying, it hurts like living, but my body is turning out the lights one at a time to close the factory (and tell me that that is not depression right there). On the flip side I'm very open about talking about my illness or this process. I am not scared of dying (yet; I may be in denial). Almost no questions have come about that, but I'm open none the less. I think the most important this is that I don't let the anger, the sadness, the denial, and the depression get in the way of the happiness.
Q) What do you want done around your death? Anything that we can do to honor your memory?
A) Well as I'm dieing in my final hours I would love to have all my loved ones around. I will probably be unconscious and don't know how realistic that is. When asked what I wanted to happen to my body after death I replied "Taxidermy." Something tells me that isn't gonna happen. I have a feeling that I'm going to be cremated. That is fine with me. Although I wonder about my tattoos. It feels like a waist, I hope they can remove that skin, cure it, and put it in frames.
As too honoring my memory. I mostly want people to be happy and smile. So I say plant a tree or do a good deed, and smile in my name. Donate time to a good cause if you can't donate money. Indeed that might be more important than donating money, I don't know. I didn't volunteer as much as I'd have liked too.
Q) Whats going on with that art tattoo thing?
A) Well I got three pieces of art. I am hoping more might be coming soon so I can get it all done into a sleeve around my arm. Hopefully soon, Doctor said I could get a tattoo but don't know how long it will be where I can stand it. And if someone doesn't want to do a picture or something like that, that's fine; write an entry to my blog, and I'll post it. You could write a poem, or how your feeling or how I treated you in life or something like this.
Q) Who is your nasty friend?
A) I'm not telling, except to that person if he asks. I'll give you that much of a clue. I've also learned since then of some heavy stuff going around him, so I don't want to burden him with guilt. And I understand that this may be his reaction to seeing mortality in me.
Q) Noah are you looking for books? You should read *blank* book. Noah read this.
A) I'm not sure how I feel about books now. I've always loved to read so I've spent a lot of time reading. But being on my last few legs now, I almost feel that reading is a waste of time. However that is kind of a cop out answer. I waste time with TV, and that is much less beatifically than reading. It may also have to do with all the religious, holistic, new agy stuff people want me to read. Its not really my cup of tea. And I'm not even feeling like reading books that are my cup of tea. So I guess I'm saying don't need to be offered books to read. As I'm not really doing more than glancing at books I have.
Q)How can I help? What can I do?
A) If you are in or near San Francisco try to visit me. If you aren't near SF send me an email, although I'm notoriously bad at writing back to you. If your feeling like you have some extra money you can mail me a card, snail mail style. That's really all I want and need. Well that you can do. If someone is a doctor and feels like removing this trake, I would be ever so grateful. My parents may want some break time so if you know them feel free to call to watch me and let them go out or stay in and sleep.
Q) How are you feeling?
A) Alright. If you want me to get more specific I will, but I'm always gonna be alright because I know that a week from now I'll be worse and a week from then I'll be worse and so on until a week from then I'll be dead. I hate to be candid like that, but its only going to get worse from here.
Q) Why do you hate the tracheotomy so much?
A) I don't know, I just do. Its annoying. I'm always coughing up Flem. It is hard to disguise if I want to go out. It makes talking, which is possible just painful, impossible. It makes drinking impossible. I cant turn my head as much as I could before. It screams to everyone that this guy has a problem, which is not the business of strangers on the street. Because of that I stay indoors slightly more than I would have otherwise. And the flemy discharge gets all over my chest and neck, often when I am sleeping. I hate the Trake more than the cancer, and that is saying quite a lot, because the cancer brings me new and exotic pains almost daily.
Q) Are you angry/sad/depressed/etc.?
A) I'd like to think that I'm not angry or sad or depressed. But I'm can't. Every now and again when I scratch the surface I find anger and sadness. Mostly because I was a capable self-sufficient man, and now what can I do. Getting out of bed is almost an ordeal. Going to the bathroom is an ordeal (generally one that should be celebrated). I had energy and could lift things that needed lifting, and I had focus and could write "whatever" and generally get an A in school. I guess this is dying, it hurts like living, but my body is turning out the lights one at a time to close the factory (and tell me that that is not depression right there). On the flip side I'm very open about talking about my illness or this process. I am not scared of dying (yet; I may be in denial). Almost no questions have come about that, but I'm open none the less. I think the most important this is that I don't let the anger, the sadness, the denial, and the depression get in the way of the happiness.
Q) What do you want done around your death? Anything that we can do to honor your memory?
A) Well as I'm dieing in my final hours I would love to have all my loved ones around. I will probably be unconscious and don't know how realistic that is. When asked what I wanted to happen to my body after death I replied "Taxidermy." Something tells me that isn't gonna happen. I have a feeling that I'm going to be cremated. That is fine with me. Although I wonder about my tattoos. It feels like a waist, I hope they can remove that skin, cure it, and put it in frames.
As too honoring my memory. I mostly want people to be happy and smile. So I say plant a tree or do a good deed, and smile in my name. Donate time to a good cause if you can't donate money. Indeed that might be more important than donating money, I don't know. I didn't volunteer as much as I'd have liked too.
Q) Whats going on with that art tattoo thing?
A) Well I got three pieces of art. I am hoping more might be coming soon so I can get it all done into a sleeve around my arm. Hopefully soon, Doctor said I could get a tattoo but don't know how long it will be where I can stand it. And if someone doesn't want to do a picture or something like that, that's fine; write an entry to my blog, and I'll post it. You could write a poem, or how your feeling or how I treated you in life or something like this.
Tuesday, February 15
Letter to my World
This is a letter I wrote last night. It started out as a blog, then got converted into a letter to some select people, and the intent to still post as a blog. As I state, feel free to email me anything at Fadingwildcard@gmail.com, or post on the comment link. I'll probably take all the questions and do a FAQ for my next blog, so keep questions and comments a 'coming. With out further ado;
Hey everybody,
Noah here. Some of you I haven't seen in a while. Others I've seen just the other day. Either way I do want to hang with you sometime soon. For those that don't know, in september of 2010 I was diagnosed with cancer on my tongue. It sucked, and I got it removed through an exhaustive surgery. The treatment had a few bumps but it was going cool..., until I was diagnosed with a really nasty case of pneumonia. I didn't really know at the time, but it came very close to killing me. I was in the hospital 2 weeks and then fought hard to get out. Then two days later I was brought back in an ambulance. Boy howdy was I embarrassed. It ended up that all and all I spent 5 weeks in the hospital for pneumonia. But I got out and was stronger than ever, and with 2 months past the first surgery I was ready to finally start my radiation treatment. But the doc wanted me to put on some weight before I started radiation, because I had lost something like forty pound. So for two weeks life was was a great big pig out. Eating whatever I could chew and getting all my favorite foods (that were easy to chew)! It was awesome, except for the hard time chewing. And I brought my weight up to 125. Unfortunately my mouth started hurting again. And I found out, much to my chagrin, that the cancer was back. Not only was it back, but it had expanded and grafted onto my jawbone.
So fast foreword a bit. My Rabbi, parents and I meet with the surgery doctor. He outlines a surgery that I talk about in my blog. I was initially against it, wanting to go strait to hospice. But I am convinced that the surgery is the best choice all around. So I was on the surgery table just last week and they didn't do it. It turns out the tumor has grown to big. Which is why I wrote this email to all. For those that don't know, I am terminally ill.
Now I'm more or less accepting of that. It kinda bums me out that I will go in a few months, if not a few weeks. Barring any miracle mind you. Which I'm hoping for, just not betting on. Now I'm not asking for much. I don't have energy, and am not really allowed to go on trips. Basically I just want to see and spend time with friends until I go. Celebrate my life as opposed to morning my death. I don't think thats a lot to ask.
So I am sending this out not to bum anybody out. Lots people have drifted closer since they learned of my illnesses, but some friends seemed to drift far away, and in one case has become rather nasty. For all these people, close and far, let me know how i can get closer to you. Even if it's just by chatting online. I set up this email account for that. If you want to read my blog it www.noahvscancer.blogspot.com. And if you have any questions at all I welcome them. Feel free to ask anything and even tell me anything. If you don't want to deal with my problems or hear them at all, just email me that, and I'll take you off this list.
So now I'm starting to ramble. Just to help out my email is fadingwildcard@gmail.com. I really welcome seeing most of you, and I hope to hear from all of you. Lots of love,
--Noah Nacamulli
Hey everybody,
Noah here. Some of you I haven't seen in a while. Others I've seen just the other day. Either way I do want to hang with you sometime soon. For those that don't know, in september of 2010 I was diagnosed with cancer on my tongue. It sucked, and I got it removed through an exhaustive surgery. The treatment had a few bumps but it was going cool..., until I was diagnosed with a really nasty case of pneumonia. I didn't really know at the time, but it came very close to killing me. I was in the hospital 2 weeks and then fought hard to get out. Then two days later I was brought back in an ambulance. Boy howdy was I embarrassed. It ended up that all and all I spent 5 weeks in the hospital for pneumonia. But I got out and was stronger than ever, and with 2 months past the first surgery I was ready to finally start my radiation treatment. But the doc wanted me to put on some weight before I started radiation, because I had lost something like forty pound. So for two weeks life was was a great big pig out. Eating whatever I could chew and getting all my favorite foods (that were easy to chew)! It was awesome, except for the hard time chewing. And I brought my weight up to 125. Unfortunately my mouth started hurting again. And I found out, much to my chagrin, that the cancer was back. Not only was it back, but it had expanded and grafted onto my jawbone.
So fast foreword a bit. My Rabbi, parents and I meet with the surgery doctor. He outlines a surgery that I talk about in my blog. I was initially against it, wanting to go strait to hospice. But I am convinced that the surgery is the best choice all around. So I was on the surgery table just last week and they didn't do it. It turns out the tumor has grown to big. Which is why I wrote this email to all. For those that don't know, I am terminally ill.
Now I'm more or less accepting of that. It kinda bums me out that I will go in a few months, if not a few weeks. Barring any miracle mind you. Which I'm hoping for, just not betting on. Now I'm not asking for much. I don't have energy, and am not really allowed to go on trips. Basically I just want to see and spend time with friends until I go. Celebrate my life as opposed to morning my death. I don't think thats a lot to ask.
So I am sending this out not to bum anybody out. Lots people have drifted closer since they learned of my illnesses, but some friends seemed to drift far away, and in one case has become rather nasty. For all these people, close and far, let me know how i can get closer to you. Even if it's just by chatting online. I set up this email account for that. If you want to read my blog it www.noahvscancer.blogspot.com. And if you have any questions at all I welcome them. Feel free to ask anything and even tell me anything. If you don't want to deal with my problems or hear them at all, just email me that, and I'll take you off this list.
So now I'm starting to ramble. Just to help out my email is fadingwildcard@gmail.com. I really welcome seeing most of you, and I hope to hear from all of you. Lots of love,
--Noah Nacamulli
Saturday, February 12
No news is goodnews
So I went, against my better judgment, on the advice of my advisers and generals for one last battle. It was a gigantic surrender on my part. The cancer has won the war. Good effort for anything you put towards the effort, every little prayer for me and my family.
On the one hand they found this out before the docs started cutting into my face. On the flip side they said I'd die of chocking on myself in a matter of days. I would have preferred to have been able to make the dissension to get a tracheotomy on my own. Personally I'd rather die.
And I will die. Not immediately, once I get home. Depending on how much work has to go into trake care I may stay a month up or wait til the lord decides he needs me up there (despite my lack of faith) and calls me up in about 4 months from now.
Honestly I am ready for the end. I was really hoping it would come with surgery. I'm still in immense amount of pain and the hospital hasn't done anything to help. But I'm tiered and grumpy. I'll retry to write something tomorrow. Lots of Love ,
-Your Favorite Dead Guy ,
--Noah
On the one hand they found this out before the docs started cutting into my face. On the flip side they said I'd die of chocking on myself in a matter of days. I would have preferred to have been able to make the dissension to get a tracheotomy on my own. Personally I'd rather die.
And I will die. Not immediately, once I get home. Depending on how much work has to go into trake care I may stay a month up or wait til the lord decides he needs me up there (despite my lack of faith) and calls me up in about 4 months from now.
Honestly I am ready for the end. I was really hoping it would come with surgery. I'm still in immense amount of pain and the hospital hasn't done anything to help. But I'm tiered and grumpy. I'll retry to write something tomorrow. Lots of Love ,
-Your Favorite Dead Guy ,
--Noah
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