just to be clear

I am not out of the hospital. And probably never will be (okay, that’s just how it feels). I can go out for a couple days, like I did for the new treatment, but that’s it. My release date is like a dream, something phantasmal, but to be fair, I just can’t go home. I can’t eat. I need an IV drip to survive. They need to set up a private doctor for this and part of that is a consultation. Finding this doctor and setting up the consultation has been a continual nightmare. So that’s where I am now. 

Another just to be clear, but this goes a long ways back. I talked about the angels, but only had nicknames for the female angels giving the impression they’re all femme type. This is not true and a disservice to all the male angels, including my nurse last night. He helped get me through that long night when he could do nothing about the lack of powerful medicine available. Along with megane nurse he might be one of the arch angels of the hospital.

It has started

My first treatment with alternative medicine. I’m not sure what to think except I hope it works. The thought of having a lifespan instead of a death sentence is very appealing. You know it is a lot harder to face death when it’s weeks away instead of a year. It is scary harder. So yeah, everything into this and the doctor’s confidence. 

But first, let me tell you about the place. For one I came in a wheel chair, and they had no ramp. Not a confidence booster. The nurses were already out in full force and helped me climbed the steps so that helped some. They were extremely nice, considerate. Inside, it was a small little clinic with a number of bed for IV treatments. They were occupied often, people were coming in and out of the clinic. The doctor herself greeted me in English, though most of the procedural talk continued in Japanese. The gist of it was my main treatment was going to be this vaccine and a vitamin C IV drip till we can get to the real cancer killer. For yesterday, I took the the vitamin C drip and are waiting for the vaccine which might come in by Friday. It went smoothly, the bed was comfortable and I basically slept through the whole thing.

Troubling but I guess necessary aspects. My life beyond will be a healthy one, eating Japanese food and little fattening foods. Well, I guess that’s to be expected, but one of my motivations is just to have these fattening foods. Not all the time, but sometimes, oh God do I want the fattening. My image of continued life is me eating a Whopper again, pasta again, cookies again. The doctor was quite insistent, all of this stuff was poison and I’ll be living with cancer all my life that there is no getting around that. 

Just as long as I live.

my back

Is getting like before, in other words it is starting to hurt round the clock and all the ice pads won’t help it. I can’t even seem to lie on my side all that much. The solution is getting the hell out of here. That’s all I can think of. 

Damn it I was given four weeks to live four weeks ago, come on, I need out. Sorry, I’m writing this with the pain in my back driving me crazy, I can’t seem to write about anything else or with any kind of patience and understanding.

I am weak, I do very poorly with pain.

I solved

Friday and Saturday today. Whoops, we solved. My brother mother and I. On the recent front it was talking with my mom that led to the breakthrough. It was a lot of me throwing ideas at her, but that wasn’t all. She would keep asking me how does this advance his character, keeping me on track, is it intrinsic to the story or just an add on? She had me compare him to the original version, the one my brother is now doing in comic form and got the little quester out of the second. Oh it was great. With Saturday it was really all my brother. By the way, just to keep things straight, we’re talking about the second version of Friday and the first of Saturday. And for Saturday, man, there was no way I could up with what my brother did in a day. In day. Or I don't know, less? I had been working on it for months. Basic idea: a series of encounters that would force our heroes to work together to solve it. See, I thought I’d need some epic scale thing, like they were going in to fight the evil empire but that was all wrong. Instead it becomes a personal journey into greater and greater strangeness.

So anyway, all this means I’ve been super up, mind going like crazy all day, so yay, chance to worry about the crash. And I am worried, I’ll be honest with you. Hoping some work on the DB itself will tire myself out enough to at least feel sleepy. 

At least it’s given me something better to write about on the Diaries too. Otherwise my life here is contained in those little lozenges to the rhythm of the IV drip. Drip drip drip. Not a great beat, let me tell you. Oh yeah, it’s also punctuated by the screaming pain of those IV needles so they can get my drip drip drip party started. No no, the Dark Backwards is much better, if I can only stay in it for as long as possible. And if possible…

Complete it?

Damn it, I want to live so much. 

Today, not so much

I mean blood tests that took forever to get right, the news I wouldn’t be going home today, then to make everything perfect, another round of blood tests that took even longer. Whew. You know, the initial prick isn’t usually all that bad, but when they swirl that needle all around under your skin to find the vein, my feeling is closer to pain-pain-pain! And stop it. But the worst feeling is the hopelessness, like I’m never going to see that beautiful red sliding out of my body.

Fun fun fun.

I was also depressed for moments like these. I mean after my mom and wife and Francois have all gone home it’s night, the start of the night with hours of sleepless tossing and turning ahead of me. Today going to try to widdle them away a little with writing like this and my first foray in a long time into the Dark Backwards. I have an idea for a second draft to go with my brother’s comic version that’s makes me excited to live. And terrified at what I have to lose…

It was a good day

Though most of it involved me getting my head no higher up than my pillows. They’re big pillows, and lots if that helps. There was a nice dreamy haze I floated in and out of this afternoon.

Wish I could catch a ride on that dreamy haze now, though I did have some good ol knock out moments of sleep. Enough to nearly get me into 2:00.

Of course I’m talking about my outing home and coming back. “Outing home,” I like that. Since my outing home I’ve been wide awake. Always before sleepy-headed, barely went through a conversation with an eye open at max and everything was too hard to do. Ergo blog problems. I’m starting to come back now, it’s getting a little easier now.

In fact I feel down right healthy. Well, from the head up maybe. Still piss into a diaper, still can hardly use my legs, still with a persistent low grade fever. But it’s the feeling, that genki-healthy feeling.

Like I’m not going to die in another month.

How

Hard is it for me to write now? This is not a rhetorical question, I want to find out. Pretty much this latest surge of cancer has been clobbering the hell out of me and to do anything causes exhaustion. Too much concentration wears me out, but today I’ve been finding out that’s not the case at least with sitting up and talking. And now I’m writing again, easy stuff to be sure, not dredging the dark backwards of me own memories for details on my day and stuff, but—but I did this after after going through chrome and safari, usually enough to exhaust me on their own. So am I getting better? About three weeks into four weeks left to live and I’m getting better? My wife would say it’s the new supplements she’s giving me. Right now, I’m not going to disagree.

X-ray, bed

They brought an x-ray machine to my bed today. I didn’t even know such a thing was even possible. And what does it mean? Save me the trouble? Worried about all those tubes in me? Honestly don’t know.

That was not today, nor was yesterday… when I went home. I cant tell you the happiness even though I spent a good deal of my first night spitting up.  But in the end I was able to sleep in my bed. I want to die in that bed, some twenty years later at least. 

sorry

Haven’t written much lately, I’m sorry for that. It’s actually pretty hard: fevers, hiccups, bad typing…. Also to be honest, I don’t have the same energy I did last time I was here. Everything feels too overwhelming to do. But still, a case could be made for not trying hard enough, ergo the sorry. See if I can do better?

water

Is nearly the sum total of my cravings. Oh how I want more and more, cold cold water, straight out of the fridge.

Oh yeah, I also want to go home. But water, pretty damn immediate that craving. But I would onlylimit myself to a few gulps an hour. Hmm, seems like a good time for one now… oh that was good.

"Drive"

Today was our drive day; instead we went to the park. I’m not complaining. Think maybe my wife’s arms should, I mean all that pushing of the wheelchair. Good thing Im not what I was. 

But the park was nice and I got to hold a baby. Let me ‘splain. 

I was going to meet one of my former coworkers today but I didn’t know when. As it turned out she appeared the same time as we were leaving. Problem? No! We talked a little inside, she couldn’t stay long as she had her baby and mother in the car. But see, since we went to the park she was able to see us and drop by with the baby. She let me hold her. Such life, such a grip! If you’re looking for blessings and miracles, there you go.

Beard change

So my wife took this kind of shaver where you can vary your shaving thickness and took it to my beard. No mirror around but I can feel the results. Where once I had an unmanageable rat’s nest parked on my chin, now I have a beard.

Now I have a fever that’s pretty bad. Hard to get rid of these guys. I guess I should sweat it out with the covers I have and… liquid!

And it worked, still have time to go. In the meantime there was vomit and hiccups… the vomit seems to have passed now. Now there’s the sweat and fever worries should my clothes turn cold, which so far they haven’t.

milk

It seems as if I am getting it pumped into my stomach now. That’s a new experience. The day is just beginning…

The bag exploding with diarrhea, that wasn’t too pleasant, and yet, once it was changed, laying there waiting to get my clothes changed kind of was. 

Later… less with the nails. Okay, writing is suddenly more possible if not still clumsy. Finally. So in just a bit o time I’m going to have my first try of ice cream in a while and the first fitting of solid food down my throat. This will be a big one for me…

It is six hours later and the jury’s still out on that one. It was stuck. It got loosened, but will I see a regular flow? This is the question that sticks (sorry)

It must be Christmas

It’s a second post! That I started. Without knowing what I was going to write about…

There’s a lot I can of course. My mother meeting the Yuuaz Nurse or the family meeting the BMN, seeing the things and people I write about and my readers collide. I can write about the freedom of not having the tube in my nose and the phantom tube I sometimes feel. Or what it’s like simply not eating and knowing you’re never really going to again. Yeessh. Or writing about refrigerator trouble because it looks like the card’s time has run out, or how I’m tired of this position but it’s hard to change it. Little quibbling things. 

Or maybe how much better life is when you’re not hiccuping through it. That’s a good one, but I won’t tackle this one too much in my superstition only to say, grateful for all the non-hiccup time so far.

Today stuff

Could be a typhoon, don’t hear anyone talking about it yet, the clouds aren’t moving particularly fast. I don’t think I could take a typhoon, maybe nobody will come. I’m getting spoiled, but the truth is I am also getting soft in the writing. I think my wife is right, my fingernails are too long. One of the reasons I’m having trouble hitting the keys right. These sentences aren’t flowing out of me anymore. Complain, complain, but I feel less of a person when I’m not writing.

My wife isn’t coming today, she’s too busy this day and too sleepy, I’m not objecting. But if my mom can’t come over due to the typhoon, I’m not going to be feeling good let me tell you. Again, not that I’m objecting, don’t want my mom all alone out there in a typhoon, are you kidding?

I’m grateful so much that she is here, that she has taken pressure off my wife. Well, even if she doesnt come my brother will be calling or skyping so what the hell am I complaining about?

needles and tubes

I’m losing all these details, like needles in the rain. What? A lot of needle details today. Yeech. And then I had my operation. It went very smoothly. It was all a sweet-sweet blur of people looking into screens and talking and then it was over and I had the tube out of my nose and a persistence of no hiccups! Also apparently no fever either which was really stopping from writing this blog.

Now it seems to be my fingers that wont work this keyboard properly. But I just wanted to say it was amazing to have my family there to support me, it made all the difference. Now they are gone but my mother is staying longer so the support will continue in many ways. And let's just leave it at that. 

Thank you

I don’t know what else to say now. Except thanks to the many people who have written by email or Facebook expressing support, love, prayers, etc. I am extremely grateful my family is here, they have made this all bearable, easier. Their timing was hideously perfect (sorry for the adverb adjective pair) and I couldn’t have been luckier to have them. Sorry, I don’t really have anything else right now. Still not exactly bursting with sunshine here. It’s all about reconciling myself to what is going to come. And all of that becomes pretty hard to think about when it comes to my wife.

So I'm going to die

In a blog called Cancer Diaries this is really shocking, news, huh? Well, I mean I did think I’d get more time. Certainly hoped. My liver seemed ready to oblige. My stomach however was not. Something called pertinnitous, but I know that’s the not the right spelling of it. Guess it’s the force driving all my nausea and hiccuping and what not. And now it’s going to claim the rest of me.

Fuck.

But it’s been a couple hours at least I’ve had a chance to talk to commiserate to laugh and cry… it’s not like I’m ready for this, but I don’t feel as bleak. For all those who read this and for all those who care I feel more sorry to do this to you. Please, blame my stomach…

Impressions

Of how I felt getting the news about an hour or so ago. In one word:

BLACK

It spells out this sentence in my heart as the doctor was spelling it out before me:

“You have one month to live, maybe three.”

safdweirnvieur8r23rkv!!!

Askfnksfweijwelkkej,f.dfnekhrijet;jq@9u3bjnfjlkfvdgkjdgijaioeutiugnkk;;ijoui4orgkndfgoerqut9iwoiitt44tojgmkgmtoiotoiwejkgd

Too many things

To write about, but I’ll try to get some things down. Like I’m back in the B-side part of town, with the Angels and the Bully Moms. I have a million and a half tubes running in me, transporting anti-vomit medicine, calories, proteins, antibiotics, my piss, my stomach nastiness and I’m sure I’m missing something in there. I’ve got these massage pads attached to my lower legs which are hooked up by tubes to the machine that powers them, I like them. 

I’m a long ways from normal, but I can feel my strength, I mean the stuff I’ve been working on for the past month or so. Physically I was able to walk to the observation room today, but I got too dizzy towards the end and had to turn back. Still, it means I haven’t slipped back to my chemo days of weakness. Well, I mean as bad as things got, it’s pretty pretty hard to lose a month plus in a few days. And yes, I'm still hiccuping, but not as fiercely or as constantly. 

Things of note: my wife saw the insides of my stomach after the operation was done. The flaps of skin were on all sides of it and Y-sensei was pointing out why they couldn’t proceed.

Without the pain medication IV dripped into me, the smallest wrong move knocks a bit of pain down the corners and crinkles of my body.

I haven’t vomited the green stuff in over 24 hours. This is majorly great. 

The corridor that connects all the operation rooms is a scary place. It’s lined by these huge metals doors that make me think of meat lockers. Like where the mob might stash a body or two.

The operation rooms themselves have become very familiar places though. You would think this counts as a very not good thing, but at least I'm not intimidated by the room when I'm wheeled in. When I got in this one, Y-sensei and a couple other doctors were squatting there, waiting. A doctor’s life is waiting too? I didn’t even think of that before.

A brief message

Because I am just starting to use the computer again. But right now I owe you all the news. First I had to have surgery and when that news came it wasn’t bad, believe me. Before surgery I was feeling so bad the option of doing nothing seemed nothing short of insane. I needed a way around that obstruction, I needed a way to relieve that hellish pressure on my stomach. Unfortunately I still do. That’s the bad news. The operation wasn’t a success. They are going to do another procedure this week or next, involving another tube and more drainage. I’m just taking it a step at a time, just see what happens. 

The other thing: my family is here now! I put that in exclamation points, because I can’t tell you how much they improved my mood. I was so depressed before but now it all feels more manageable. As I said to them before, this is terrible timing for us if you look at it one way, another way is that this is the best timing possible. It’s nice to have your family around you in a crisis (though I know it is not the same for all people and all families, I am lucky I know), hell, it’s necessary. They help out my wife, they augment her, and I know I am not alone. So the bleakness is gone, as if it never were. 

Now if we could do something permanent like about those damn hiccups.