I am closing up these days and don’t think that will change till I get the high-caloric bag back and operate on something like 1000 calories again. As it is I’m operating on 400. You can probably see that’s not enough. It’s taking me everything to write this. God I’m going to miss you guys but hopefully I’ll be back.

water!

Practically all I want these days. That taste has replaced the Whopper as my ultimate crave. Hey, luckily I can have it, but smaller than the real gulp-sized amounts I want to throw down my throat. This is what I did today. Throw it down my throat. I’m not supposed to do that. But the worst of it seems to be I throw up a little water and my tube runs faster with the water. Oh yeah I also got my vitamin C IV drip for the third time at this place. Results? Beat me. Don’t feel any genkier, any bit healthier, I’m just exhausted from all the everything that is not sleep. But my wife, eep, I think the stress of all this work before her work, today it really got to her. Didn’t help we were late in getting back, didn’t help I fell again because I didn’t follow instructions properly. After helping me to my bedroom door, she gave me my small popsicle, my water, and cellphone and hurried to work. Some people might think it cruel, I think this is the flip side to all the things she does, many which are in the background to what I see everyday. She came back from work to help me back up, and that’s why I’m writing right now, then she returned, because there’s a lot she has to complete. That’s where she is right now.

And the biggest insult is I’m thinking of giving up. Everything exhausts me, I don’t think about my story much any more (Jake!), the substance I dream about consuming is water rather than a Whopper as I think I might have said, and I fear going up and down those stairs. I mean I came up here to die, basically, before all this hope stuff set in. But then again, I’m writing this blog post I couldn’t have done in the hospital.

That’s got to count for something, right?

Not a furlough, not a what-if, not an imaginary story. I was finally released from the hospital into the hands of nurses and IV drips (which won’t be as round the clock) and a flight of stairs I fell on as I reached the top. Got nothing for legs (hold on let me see if I can do this one exercise thing… yes, I did thank you very much so I’m better), but maybe the decline isn’t a trend, just this afternoon. I’m already down enough. I think as any of you who read this know, haven’t had much energy lately, and then there’s the bad back which I made worse sitting up to blog. You have seen the results. Now that I’m home I promise… okay okay, I don’t know what’s going to happen now that I am home. And the only reason I'm home, sitting up in my chair and not still on the floor is my wife, obviously. Not going to forget her again. You know she's the one that changes the bags of my IV drip, injects other medicines into a little tube I have that goes into my stomach, and helps move me around so I'm not virtually paralyzed. So... Keep up the blog as long as I can as I head for a miracle cure or the end of my time. Hoping for the former even as the prevalent exhaustion whispers into my ears for the other side. 

Hope after all this absence you’re still with me.

Home

For another furlough and everything thanks to my wife. Really I got to start giving her more credit, like the way she transfers everything from my hospital room to my bedroom, and we’re talking my computer my clothes, water bottles, pads, my man pampers, the way she negotiates with them and handles the paper work. Then leaving she wheels my wheel chair, folds it into the car and yeah, drives me home. Me? I sit on the bed, I sit in the car seat. I make an effort to get up, which I am usually not successful on my own. Oh yeah, she also helped me piss into a piss bottle so I wouldn’t piss into pants. But I did climb up the stairs with her pushing me all the way. Some of that was my muscle effort.

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.

The latest

Maybe there won’t be a need for an operation. If liquid can get through. I guess Monday they will pour water down my nose tube, if it passes through the small intestine then we probably won’t need an operation. But then they have to work on feeding me in increments of soft to hard food and Jesus how long is that going to take? Soon enough they’ll find another reason to keep me longer. I am tired of hospital life, tired of being away from my wife. What if this is it for me? Hospital life until I die?

Yes, more self-pity. But then again, I still have the single room.

Hospital, again

Now with new tubes in me. You can’t imagine the excitement.

It started yesterday when I kept on vomiting a heap of green stuff into a plastic bag. Actually it started the night before, felt sick after eating, even swallowed back a bit of vomit, but the real vomitous surge did not hit till yesterday and it kept on hitting till I vomited the last (maybe) of Wednesday night’s meal, the last damn thing I ate. Yesterday was bad. I had to get off Skype with my brother basically to start the vomiting parade. Then I went to lie down until the nausea hit again with the complementary pressure in my gut. Then I would sit up and burp and spit and vomit a little but the nausea wouldn’t go away. It never went away until I gave in and vomited massively till I was left sweating and shaking. This is how it went time after time. My wife and I kind of knew I’d end up in the hospital today. My wife really wanted to go last night, she was so worried. I was too nauseas to be worried. All I thought about was ending the damn thing (ending what?). 

A side note and very sad thing about my character… if I had to choose between that nauseas/vomitous state and death I’d probably choose death. If had… let’s hope it doesn’t come to that.

Anyway, today. Got my blood test and despite my fears that because of my dehydration the blood wouldn’t flow (this has happened before) one little prick was all it took. Then after that we went downstairs for my draining. It was in the X-ray room. The idea was they were going to find the spot, mark it, and begin the stabbing. It didn’t go like that. He took one look at the X-ray ordered a CAT scan to find out more about this obstruction. 

Obstruction, what?

Well, first I had to get the CAT scan, or rather get my power port poked to empty the medicine into me that will turn up the heat on my insides and what do you know, she got it on the first try. Then I was CAT scanned, returned to the second floor (did I mention because I was too weak to weak the long corridors, my wife toted me around in a wheel chair again, that means she was pushing me back and forth and up and down so many times) where after a bit of a wait, Y-sensei told me there was an obstruction and it was probably from the cancer. And if that wasn’t fun enough, here’s the procedure for relieving the pressure and getting rid of all that bad shite in my guts (gall bladder and apparently my lower intestine, it was all a whirlwind of examination and procedure): they were going to stick a tube down my nose until it reached my lower intestine. What? Say that again? No, don't say that again, don't ever say that again. Can we go back to the original plan now?

Of course, it hurt, was terribly uncomfortable and remains that way now. Will remain that way until the operation that will do something to my intestines that will help me in some sort of way. Seriously that’s about all I know about it, that, and it will be a real operation with general anesthetic. Right, my operation, they kind of just tacked on that bit of information. Things are so wrong with me that sticking a tube down my nose isn't enough? Well, general anesthetic. Yay. Put on the mask and I go out. Double yay. Because let me tell you, it is no fun being awake when they jam a tube up your nostrils. Yeah, both of them, the first one was too narrow hurt too much. I mean there was the local anesthetic of some kind of jelly, but no… just no. I don't even want to think about it. It was like they were trying to crack into me... The second nostril went smoother, but that’s not to say it was a smooth ride: it hurt often but not in that crack me open sense, and of course the discomfort, the remaining bit of it being the tube in my throat. Still in my throat. Persistently in my throat.

So let’s recap: until yesterday I was pretty healthy and Friday was going to be another hospital day, albeit with the stabbing and the draining, but only on an outpatient basis. I was getting ready to see my family who are coming to visit and planning the few places we would go to. Today I am lying in a hospital bed with a tube coming out of my nose (it empties into a bag I have stashed at the bottom of the IV stand, very much like my old shit bag of yore), that is also making me very uncomfortable in the throat. I am going to be here for God knows how long with an operation that can’t come too soon (that’s when they will remove all this malarky), and now they are floating the very real possibility of cancer being involved in my guts again. I am worn out, alone, afraid.

Time for some self-pity. I am in a single person room (only one available, will have to pay for it, 5,000 yen a day), my wife left for work hours ago, the isolation is complete. What better thing to do right now?   

Cancer boundaries

You know, it’s easy to forget sometimes. It’s easy to forget when I start to live in my room much like my life before. I am limited in what I can do physically, and even when it gets cool enough to get out and walk more, it still won’t be all that different than my previous existence. Walking to Yuuaz, walking to Gusto... Though I really crave doing that. But that's another story I hope to get to, the appreciation of doing the little things I did before. Anyway, about those days, the days when it all blurred together and I could hardly appreciate each one as it came. I think that’s why it’s good sometimes to think of those cancer boundaries the doctors set. Even if I transcend them all, melt those tumors down and live a normal life I am still going to die. You know, someday. I think before I acted like I was going to be immortal, like I had all the time in the world to waste. Made it easy to want to lose myself and just forget the world around, hell, my body around me. Brain in a jar. I guess with all the writing I do it’s easy to wonder how much is different now. The difference will be in the finishing of it. So I guess when things get note-taxingly blurry in the Dark Backwards it becomes easy to lose sight of that as well. And then what do I have that’s different than before?

My cancer?

No, that’s where we started with this. But it’s where I have to go sometimes (today?) to remind myself, to renew myself. So what does that mean for today? What exactly should I do?

Don’t forget your people. Get out there and connect. Hell, what about setting that laptop on your legs when you take the bed after dinner? Stop watching so much TV. 

That's it, that’s the thing. A thing at least, a very big thing. See, when I lie down or stretch out my legs after eating, when I empty my colostomy bag, when I go to sleep or before it, many time I turn on the ol TV. That’s one of the things that blurs your days, and your head. Mind poison. “Now” poison. What I cut out in the hospital. Spent weeks without it, way it should be. Get enough of it during eating, our recordings and DVDs and such, gots to be real careful about anymore. I am saying this after watching track and field with my chair still pointed at the set, which is at least off. Yay, for that.   

Sunny!

When a typhoon passes, it really goes. I guess typhoon number 15 has left Japan and with it every trace of cloudy and windy weather. It’s sunny and getting hot now. Like the buffeting winds and bullet rains never happened. This is actually business as usual for typhoons here, leaving sunny calm days in their wake. I mean not all the time, but quite a bit. Sometimes we even get typhoon nights and blue sky days. 

Nothing but blue skies…

Kind of feeling down right now to be honest. Not a big thing, I don’t think, just going through a couple days without my wife and without the world. Well, the world is two things for me now: Skype, so I got half, and going out with my wife. Still that you know, physically leaving this room and parking my ass in the air-conditioning of her car then watching the streets of Mihara go by. When you don’t have it things get claustrophobic. Also my writing has degraded into mere note taking these days, the Dark Backwards going truly dark. Or at least hazy. Or maybe it's all the cheap segues (see the top of the paragraph, seriously man, what is wrong with me?)

Gots to keep plugging away, going to take awhile, I know that. It’s all about patience, every day ain’t going to be perfect nor every word. This is just a bit of down time. If I gave into it, let my writing go and just watched TV all day (still manage to watch too much of it) then this would become a real problem. For now, I hope I can see more of my wife today. Well, shower time. Changing the bag. We can talk then, a little more “us” time. Yay, something to look forward to.

Wind

From yesterday

Raising up a ruckus. Right about now the typhoon is supposed to be leaving the shores of our fair Nippon, everything is safe, yay. It casts a wide circle however: twice in the last couple minutes the wind pressure opened the door. Hell, it only did that once this morning. This storm still has teeth it appears. 

I would say I hope my wife is okay, but she’s probably safer where she is. Just like me at the hospital. Probably more worried about the house than anything else.

Typhoon Tuesday

It’s scarier being home when a typhoon hits. Meaning this home in particular, kind of old and flimsy feeling, my wife always sure it's going to break down under the pressure of a little wind. She’s had to tie a number of different parts of our roof too to make sure they didn’t fly off. I actually helped once in those pre-cancer days. Last time I was in the hospital feeling pretty safe, wrote a post about it too, should be in there somewhere, talking to the Yuuaz Nurse about it, I think. This morning I was kind of huddled in bed with my sleeping wife while the wind did its old howling trick, the house its shaking, the windows their rattling, the rain its buckshot bulleting of our windows, and our bedroom door opened once from all the air pressure. But the shaking wasn’t too great, the worst of it past, and now there are only intermittent strong winds and squalid pervasive humidity in the air oiling my skin despite the relative coolness of temperature. My wife had the option of canceling her classes today: she didn’t. 

I didn’t want her to.

Mind you, she’d still be gone, but probably she’d be back in an hour or two instead of 11:00. So what does this mean? I’ve suddenly flipped on my feelings towards her? Hardly. I’m just behind on the writing. Ate too much this morning and barely eked out a hundred words. Also, I ate too much fried rice and am writing this now with my feet on the bed, stretched out to give my poor stomach better rest. My back is to the passing typhoon and our sometimes whipping around powerlines, though to come think of it (hear it) there is still shaking in the house that is typhoon-bred, so I guess I am enwrapped in the mild bestirred air of typhoon number fifteen. But our streets weren't drowned in the deluge like they were in Fukuoka, so yay us. We're actually a fairly typhoon proof area, hiding behind the Captain America shield of the landmass of Shikoku. Hopefully that'll hold true next week when the family comes over to visit.

Door gives a mild rattle in response. Oh thank you.

Absence

My wife is back at work today, her long summer vacation over. For her this day is worse than for me, I know. But I'm awone, poor widdle me (not middle me, damn it spell check). Anyway, I think I mentioned before about the horrors of her Monday class. Got to be a tough way to head back. Also she's going back in with her face still affected by her breakout. Her face is almost completely clear now, her skin mainly fine, but her neck still has a ring of red around it like she had been strung up for a hanging there. Creepy image but this is what we both agreed that it looks like. Also, strangely enough, it has a consistency that looks like strawberry frosting, maybe on angel food cake. This is also something we agreed upon. Hope she was able to cover enough of it with make up (she can wear that now, apply it, whatever, with the dermatologist's permission) so she can get away with it tonight. We'll see.

You know, in the old days I would be glad when she went back to work because then I could get some serious writing done. Shunning even my wife then, ugh. I don’t want to be that miserable creature in many respects, but that craving alone-time so I could write is the one thing the bastard was good at. The craving for the alone time... not always the writing in it. Still, this is what I have to do now. I have been letting my mind and my fingers idle, my once busy tapping out narrative fingers. My narrative fingers. Time to charge them back up again. And I have, already, putting almost eighteen hundred words under my belt and it's only sevenish. 

Today I also have to put my legs to it as well, planning at nine to exercise them on my wee stationary bike. I wonder also… is it cool enough to go downstairs and then out tonight? Maybe with my wife, walking the dog. It doesn’t seem hellacious when I open the bedroom door, otherwise my only experience with the outside temp is when the aircon goes on downtime and the room starts to warm a little, edge towards a bit of humidity even. Ye gods, the horror. It would be nice-- will be when I get to it--to walk the dog again with my wife, a small chunk out of the day doing stuff together, yay. Don’t know my level of exhaustion, fullness.

Are you thinking about doing it today? Really? Well, the weatherman inside me told me it might be alright… 

Getting back in gear

I realize I have been in a mental torpor the last week, that when I’m not sleeping—yay, sleeping—I spend too much time watching TV, idling my mind. I think this was just a break and now it’s time to get back to blog work, Dark Backwards work. And when my wife resumes her work schedule, it’ll be sad and depressing, but let’s face it, it'll also be my chance to do what I have to do. Hell, what I want to do. It’s just when you get out of the writing habit, it’s hard to jump back in. When you’re in you're in, and it just goes.

Geez, I’m in so much of a mental torpor I’ve barely squeezed out a hundred words on my mental torpor. It’s meta, self-referential etc etc. By the way, speaking of torpors mental and physical (ye gods what a lame segue), I went out today to return the Dr. Who DVDs and for more washletting at Yamada. We went in reverse order and in the middle stopped off at a Family Mart to pick up a ham sandwich for tomorrow’s breakfast. I went in and out of the first two establishments, walking through a brief zone of summer air. It was enough to exhaust me. 

Cause for worry?

Not overly much, I think. Often I start off bad and then when I get enough inside time I can make a decent run at walking (seriously?) and come home only exhausted. It won’t make me sick like that one time when I was still on chemo and tried to test myself walking a couple blocks and ended up with a fever the next day (in fact, it was that fever that knocked me off of chemo). Even when I was done with the walk I felt sick, could barely stand after that, didn’t eat a thing for dinner either. It’s not like that this time around, even when I test myself at Costco. Even that time when I overtaxed myself at the Aeon Mall in Kurashiki. So you know, doing fine in comparison. Worried how I’ll be when I’m strapped into the chemo merry-go-round again, that necessary gut punishment, but there’s nothing I can do about that now except get as healthy as possible. Okay, now I’m just saying shit I’m always saying. Deal is I wasn’t at my best today but it taint cause for alarm. Keep plugging away, dream of days when it’s less humid (where I’ll be on chemo again and not sonna ni affected by it, crossing my fingers here).    

Apologies

Restart.

Sleep.

Or even: 

Taking another break. 

Any one of these could be decently accurate titles of this post. It’s been a bit of time so a) sorry for that and b) been spending most of that time sleeping. Also watching Dr. Who, but sleep and a sleepy time life is what I’ve been disappearing into lately. It’s good for me? This is what I have posited earlier and I don’t think it’s too much a stretch to imagine that sleep is helping me, that resting up ain't a bad deal, healing me from the exertions of the day etc etc. But it also feels like something more, like I’m sucking my sleep out of the marrow of sleep and all I want is more sleep. Maybe I absorb around 8 to 11 hours of sleep a day and I wake up craving more. Perhaps I am trying to make up for all the sleep I lost the first time out of the hospital when I kept waking up at 7:00, perhaps it is the cumulative exhaustion of my body and now that I am able to sleep I can’t stop. Who knows, but I do love the sleeping.

Part of me though, well... you know the whole sleep as a metaphor for death thing, ergo I seem to be practicing it or for it a little too much. The phrase "there will be plenty of time for that later" keeps popping up in my head. Without the bubble of chemo I think more about death, my own death more. Not obsessively so, hell, I spend a lot of my time awake in a blurry state as I lie on the bed waiting for sleep to come. Relaxed and comfortable, I mean if you imagined my life as a torment of dread you'd be pretty far off the mark. And even the contemplation of my own death--it's more like thinking, "hey I could die this year" than a profound reflection upon my own mortality--does not always come with dread, rather I think of the cancer death sentence the doctors pronounced upon me as a marker, borders that define who I am now. Maybe before you can think of them as borders you want to transcend, you have to see them first. I don’t know really… I guess this is a long way around to talk about some good news. Well, semi-good news until I can get back on the chemo again. 

The good news as expressed in numbers:

59.6

11.4

These numbers are tumor markers, the first was when I first entered the hospital as this all began, the second comes from the days after my chemo. I guess this is what Y sensei means when he says the chemo has been working well against the cancer. I don't know what tumor markers actually are, and what they mean when you translate them into real world things like life, and does it mean I will live longer? My guess this is something they can't answer. Certainly not beyond generalities with plenty of caveats thrown in. For now I can take that lower numbers equal good for me, higher numbers bad. And the 22 it has climbed to during these six weeks of no chemo equals bad. Equals urgency, let's get strapped into my bi-weekly chemo visits, power port stickings, carrying around my chemo bottle for a couple days. All of it: because the chemo is working.

As I said before this is the news I wouldn’t have wanted to hear when I was in the healing throes of my chemotherapy. I think this is why getting out of the chemo bubble can be a good thing, so I’m free to contemplate this cancer death sentence of mine. It makes me realize how much I want to get back on chemo attack so I can knock this thing down a peg or two. I don’t want to say beat it, it’s too early to think of that. This is Year One after all, beating cancer is what, ten years, twenty, thirty? An ongoing process. That’s too much to contemplate for now. A little at a time. Eke out the months for me, knock down the pegs for the cancer. Worry about the big picture when it comes up.

At Tsuket-chan's

We had a Costco party, finally able to buy a range of things to share, from the spicy tuna sushi to the hi-rollers to the pizza salad and blue berry tart, it was nice. And I failed utterly on all those admonitiony things from the last post. Anyway, Tsuket-chan is one of my wife’s oldest friends and she invited us to her house for dinner. We brought the Costco, it was our idea and right now payment is up in the air as my wife refused to take her friend’s money only to find an ichi-man en bill slipped into her bag later (worth about 80 bucks now). See, Tsuket-chan has already given us a considerable amount of money for my cancer and all so of course my wife doesn’t want to take anymore. They’re good people and this is something I hope we can do, I don’t know, every month. A regular thing. You know, hang out with friends, eat way too much because you don’t want to leave anything remaining. No, that isn’t it. I ate too much because I couldn’t help myself. One more thing of spicy tuna, wait, that bit of sushi with the shrimp and the mayonnaise. My only stomach woe that I can attribute to obligation is eating and finishing the blueberry tart. It would look strange if I didn’t eat it when it was served to the family and bad if I didn’t finish it like her daughter. Childish. No, I couldn’t do that and as I again escaped relatively unscathed I’m glad I did it. Got to keep her friends happy, they mean so much.

Then I slept it off for about four hours while my wife did the cleaning and the feeding of the cats and dog. And then you know, it was time for bed. Well, I don’t apologize for getting my rest. That at least. Hopefully it will be enough to keep me healthy and help with that blood test tomorrow. Gold gold gold. Get that infection level down, destroy that abscess, if that’s even possible. Get me closer to taking that gut and cancer busting chemo...

A little confirmation

Didn't post this yesterday. So here it is now...

Last night it was, you know, dark, after the rain and not so humid, even a bit cool. And me? I made it around the block easy, a little stroll with my trusty cane, my wife by my side, talking Dark Backwards. It was nice, not horribly taxing with the huffing and puffing and the wanting to vomit. The toughest bit was standing for five minutes while my wife talked with an old acquaintance, kind of a neighbor in some respects. Anyway it was a nice confirmation that yes, the humidity was to blame, sapping out of me the distance I could walk. Give me the cool and/or the dry and I can almost walk like a normal human being. Hell, I even forgot the cane going into Yamada (a chain electronics store with restrooms on the first floor) for some washletting. Recovery going a pace a pace, looking back on old June blogs and how miserable I was, how dizzy I was just standing up, how tired, how I once had to stay on the bed for nearly twelve hours because I couldn’t raise myself from it or how I collapsed that one night on the bathroom floor. It was like my body and mind were two separate things and my body was so much bigger and unwieldy. I needed those enormous crane things of other people and other things to manage that hulking height and weight. But I am my own body again. 

So there’s that.

Just got to be more careful on my eating I think. It’s hard because it is still me wanting to please my wife, wanting to make her happy to see me eat and in the end my appetite keeps coming out unscathed, I stay hungry, I continue to eat. But I spend so much time after meals with a full groaning stomach. That’s not good, there’s too much of that. I mean I keep away from the vomitous feeling, I know when to stop before things get too gut-busting extreme, but I always push it. In part I have to push it as after two bites and my stomach nearly always clamps down even though I know I'm still hungry. But there are certain blocks, walls the ol Gurgle Community has put in that I push through and know I shouldn’t. Finish that piece, oh just another helping, hey, betsubara (our second stomach for desert, always had a good betsubara here).

Today I’m going to Costco. Tonight we’re bringing Costco home to my wife’s friend for dinner. Chance to be careful? I’ll show them how careful I can be, how you make a good impression in Japan right? Right?

Anyway, more pizza. Different pizza this time. The one with sausage and stuff. And then maybe seafood pizza coming home. Yeah, going to be real careful here.

On getting better

I can still feel the bones of my shoulders in quite a defined way. It’s a reminder that despite the thickness of fingers and such I still have a long ways to go. Well, if I didn’t I’d probably have a heart attack by now, gaining that much weight in two weeks. It’s only been two weeks, so I imagine I’ll have to deal with these skinny shoulder blades for some time to come. It’s not bad, since I’ve already gotten my first palpable sign I’m getting better. Maybe I should say it's a sign that my appetite really has improved, or that it's paying off. I'll take any of them really. 

So it appears I am in the process of reversing things, from taste to wedding rings. My wife might be getting better too, though I think it is still too early to tell. One thing seems to be sure, her skin problem isn’t a steroid allergy as she would’ve already gotten worse with the roided face creams and such she applies every morning and night. Just wish I could get her to sleep more. You know, to recover (like you? big man, big man). I mean most nights when she has a chance to sleep she’ll take out her computer and go through her email, check the shopping sites and generally noodle around with it for a half an hour or so. I know it’s how she relaxes and winds down, so like, this is a thing that has to be. Still, on some days when she really needs her sleep, I wish she would get it. Oh well, won’t wake her to 12:00. She should still get a good morning's sleep. 

And then after her trip to gomi-yama, trash mountain—where we deposit, or she does, the bales of trash accumulated over the week—we head over to Aeon. My first trip outside since Friday, my first time downstairs too. Yow. Recovery man, it's called recovery. How do you think I’ve gotten this far? This weekend was just an extreme version of taking it slow. 

Renewal

Tomorrow my wife will be home. As in semi-all day home, I know there will be things that will pull her away, but nothing like today (I hope). Yesterday she was preparing for a meeting of her kids conversation school that will take place Friday and today she was with a number fellow teachers from that same school for some kind of eating party. I spent a lot of her time away sleeping, like suspended animation when you want to wake up to a better future. It doesn’t help with my word count, I can tell you that. I’ll have to ramp it up soon. At least I know I can do that, I have ramped up many times before. 

Right now I am enjoying my first can of Dr. Pepper since the one that gave me hiccups for a couple weeks straight. But I don’t know, if you go by the verb “enjoying” this would be my first Dr. Pepper since I went into the hospital for the first fucking time in May. See, I didn’t have my taste last time I was out, and let tell you, it is nice to taste things again. Like last night’s sushi. Again same as the Dr. Pepper—when I last had it the first time out there was only the taste of freezer. Hmmm, freezer. This time I could enjoy the fattiness of the maguro or the salmon, the sticky pungency of the squid, the high price flavor of the crab. Nice to have that human experience back. What I was obviously craving in the hospital, bulking up a lot of my blog words with thoughts of food. Thoughts of taste. Come to think of it, I also had the same cold pasta dish as I did the first time I got out and couldn’t eat because it had no taste. It wasn’t great today, needed more karashi mustard, but it sure had taste. So I guess today is a whole taste renewal thing. I’ll take that.

One ring to bind them

Or you know, two. Two’s better. Haven’t done two in a long time. Failing fingers. Bony, failing fingers…

See, there’s a scene in Breaking Bad near the end of season five when Walt’s wedding ring just slides off his finger and hits the floor. We don’t even see it happening at first. All we hear is the pinging sound of metal. It’s a sign of how much is body has been eaten away by the chemo. And something that happened to me a couple months ago. I was in the shower for my scene, with my wife helping me wash when we heard that same pinging sound. We looked down and bang, there it was my rilying on the bathroom floor. My ring. As I said, my failing bony fingers. Yeah, it was a scary sad moment. Last night was pretty much the opposite of that.

Last night, my wife was going through things in a pouch of hers, rings included. They weren’t our rings, but they made me think of them. My wife asked if I wanted to give it a try now. A return match. I said I did and it fit. It still does. In fact I’m now wearing it on my left finger all proper like and not cheating with my thicker right. So I’m getting bigger. This is…

It’s kind of everything. Get bigger, return that weight I had been shedding in the process of my skeletization. Get healthier. Okay so I didn’t exercise yesterday. Didn’t walk, forgot the bike. I am resting even more this week, figure it’s the only thing I can do to help my infection level I talked about before. I mean I don’t know if it really will help, but I figure it’s safer than over taxing myself and sleep is when your body heals, right?

Still need to exercise today.

Also last night, choco-mint ice-cream in a wrapped cone. My wife was sort of crying to see me eat it. I think she was happy to see me eating more normally, and I guess devouring a desert is pretty much me at full normal. Not really full normal really but it was enough to remind her. And it was also after about twelve pieces of sushi so I think I was doing pretty well. Yay, sushi. Yay, ice cream.

"Today:" my wife's skin

So it’s now yesterday. Oops. My great plan to finish it off fizzled after my usual post-dinner fullness and I’m kicking up my feet on the bed to relax my overtaxed stomach then deciding, hey, why not lie down on the bed and sleep? Around ninety minutes to two hours of sleep later and I’m ready to take a shower and return to bed. So here we go now with “today.”

This “today,” Friday, was the blackspot on the week for me I couldn’t think around, couldn’t calm down about. Those hospital tentacles were going to drag me back into his gaping maw and I’d land in the Paramount bed (angel choir) pit of its stomach. Also the blood test. Well, it wasn’t only the blood test but the blood test plus the CAT scan with the ten minute IV drip to fill me with that gut heating medicine. I figured they’d find one spot to tap eventually, but two? The blood test had to be perfect. I was encouraged when I got there and they were already aware of the CAT scan and wanted to get the blood test done on my left to save space on my right for the IV people. And the blood test was perfect too, smack dap in the middle of my arm like everybody else. The nurse found the vein, not something everyone does and out slid my blood with a single prick. Boom. Yeah. Oh so perfect. The CAT scan wasn’t. We tried, meaning I pointed out the usual best spot on my right arm and today's nurse (a nice enough guy) tried to find the vein as the nurse had last week. But where the nurse last week was able to manipulate the needle painlessly towards the vein once inside my skin, this one couldn’t. Man it hurt. He did apologize a lot. Like the nurse last week he really wanted to do right by me, but I kept wishing he'd give up on this spot. Finally he did and tried the same spot on the side of my left arm, which is just below my wrist. This time I hardly felt a thing. Got it on the first try. Yay. Oh yeah, they had to move the whole IV apparatus around the table, but who cares, it wasn’t a problem, they got the whole thing attached to the ceiling so they simply slide it around. So everything went fine, I survived, and now all I had to do is wait for the thing I was really worried about. 

Here my wife left me (left me!) for awhile to make an appointment with a skin doctor for a third opinion. I was called in to the sonogram room while she was out. Y sensei was there and soon showed me the abscess still remaining from my original cavity. He talked about the infection level (or was it swelling level?) from my blood test and how it was too high. Oh this started the worry juices flowing. They might have to drain it, he said, but he still wanted to try medicine. It seems the abscess is near the spleen so they want to be careful about not puncturing it. It’s a very bleedable organ apparently. So I was starting to get worried about those hospital tentacles but he said they could do the draining on an outpatient basis. Oh thank fucking God.

And then I got the best news since maybe this whole ordeal started. I mean I guess it’s old news because I’ve actually been off chemo as long as I have been on it, about six weeks. So we're talking about chemo, which means that it is working. Working? Shit, that’s the best news I would’ve hated six weeks ago, my priorities were so messed up. Seriously, I would’ve hated to hear news like that. I couldn’t think past the chemo bubble then, which served me well in some ways because I rarely thought about the cancer and dying from it, but I guess it also made me forget that I’m going to die without it. All I could think about chemo was I wanted no more chemo, I wanted it to stop. Now, I’m healthier, a little more sane. And hearing that the chemo is working, or was working, is just the best news and I want to hayaku (hurry up) and get better so we can get started again. Hopefully I’ll meet the chemo healthy enough it won’t fatigue me so much, hopefully I’ll meet it healthy enough it won’t Hulk out on my guts this time. Lots of hope, lots of unknown in there, but still, we’re on the positive side now.

But I’ve gone over 700 words and besides a passing reference we still haven’t gotten to the title part of my post, my wife’s skin. Her face. A lot of people are suggesting stress and it’s probably true, I don’t even know what the skin doctor’s diagnosis is, he seemed to be too busy bashing the previous doctor’s diagnosis that it was a steroid infection (while she did a lot of bashing of the first doctor’s diagnosis: skin doctors seem to be an angry bunch). It sounded like he was offended anybody should slight the good name of steroids like he's going to be camped in front of the Hall of Fame till they let Roger Clemens and Barry Bonds in, and threatened not to give her the medicine if she didn’t apply the steroid cream to her face. My wife left his office in tears, telling me she was in a panic because of this. Motherfucker. At least by the glance I got of her face this morning she doesn’t seem to be any worse. Not any better either. One way or another my wife is going to have to dig up some patience. If we could only find a way to relieve her stress, but that goes for all times.

You know, it was the first time I waited in the hospital for her. It was a good experience because man, all the times she's waited for me it just can't be easy. It was nice to get the tinniest tinniest feel for what she is feeling, time and again. You think of everything she has to go through for me and maybe it's no wonder this is happening to her skin. I wish I could do something for her... something big and dramatic and could save her from all this. Save her from her job. 

Buy my book.

You haven't finished it yet. Right, better settle for getting better, reducing her burden. But still, remember remember remember. When it comes out...

Today and yesterday: benefits

Yesterday we went to the Aeon Mall in Kurashiki. This was kind of a crazy decision. Kurashiki is far, the mall is insanely crowded over vacation, and you have to walk insane, painful distances just to get anywhere,  well, they are insane and painful for my middling health. Hell, the place always tired me out at full health. 

But it had a Jurassic World during viewable hours (we didn’t want to come home too late with the threat of an early Friday looming over our heads), a Kamakura Pasta with a lot of enticing pasta items on the menu, and it had… okay it had two things but once you got my stomach, the rest of me is sure to follow. I wasn’t even sure about seeing Jurassic World. I just wanted something to watch, hell, after watching the Shingeki no Kyoujin anime last night (Attack on Titan, look it up… if you want) I was all psyched and stuff to watch it. But you know, all Japanese… So we went to the Aeon Mall in Kurashiki, following my stomach as usual.

The traffic on route two was its usual stall us for twenty minutes usual, the traffic before the mall worse, the congestion in the parkinglot the worst. Twenty-thirty minutes roving around the parking space, watching the car in front of us snatch up suddenly opening spaces everytime. I Mean I don’t know how often this happened, but it made me admire my wife’s patience in this (yes, I said patience and my wife together). If I were at the wheel, and luckily I don’t drive, I would’ve run down one of those parking space thieves eventually. My wife admirably didn’t murder anyone and finally when a disabled space opened up, she took it, propped out little green placard that comes with the stoma booklet and we had our parking space, close to an entrance. Yay, stoma.

My colostomy bag was already pretty full by the way, edging towards dangerous territory.

Then we had pasta. Yay, pasta, but… Damn it, I couldn’t eat much. I started to eat and started to get full. I couldn’t even make a halfway dent into the tomato cream sauce mound (with crab!). Well, it was tomato cream, again with the cream sauce, very filling. Still, it’s hard to measure these things other than in size and the quantity wasn’t very inspiring. So I forgot myself, got a little impatient, ate too much. Stupid, stupid… still even when I eat too much and all I don’t go crazy. I don’t try to eat the whole thing. I might go past a barrier or two, but there are plenty more magically raised in my stomach by the gut fairy, obviously, and I don’t ignore those. So I got too full, but in the end I was okay, and my appetite remains unscathed.

So then the movie, Jurassic World, wussing out on the Japanese here, and we get the tickets half off. Again, yay stoma. Jurassic World, not so much with the yays. It was entertaining… the excuse given for watching many a bad film. Alright, the first part was entertaining, when the damn hybrid dino was still fresh and you could pretend like it was going to kill even the main characters. Then they kept—they meaning the various heroes—running into it and you couldn’t pretend anymore. For all Spielberg’s crimes against cinema, when it came to action movies he knew how to run a good story. Much better than Michael Crichten who did the same damn thing with the T-Rex in the Jurassic Park novel. Spielberg cut out all those scene and the few the T-Rex was in still had impact. Have I gone off topic here? Sorry, just have a pet peeve about those showing too much things, the supposed spectacle which deadens any chance of a real exciting story and now I’m cycling onto it again. Anyway, half price. Thank you stoma.

And when it was over I emptied the bag into the toilet. Felt like real give and take this time. 

Then, after some rest (standing is tough work for me) we made the long trek to Starbucks at the opposite end of the mall. My stoma couldn’t help me here and man was it tough. Rested twice. Huffed and puffed. When landed in Starbucks I ordered their most refreshing drink and read Shingeki no Kyoujin, wishing I had watched that movie. But it was fun, being in a restaurant or, you know, in this case a Starbucks, and reading manga again. Good times, good times. The hero got to see his mother devoured by a giant, her legs from her ankles poking up from its skyward pointed face (didn’t want to double up on up, but now it’s okay?). Anyway, tired tired tired, going back was tiring too, but I guess I’m okay now. Got through it without getting sick or feeling worse today. The 7.5 on my blood test for inflammation was 4 points better than last week... 

Finally, we expressway’ed it home and got half off there too (as we had on the way up) because of my stoma. Yay stoma. And again yay, you know who. After all who was it that filed and filled out the necessary paperwork, waited for months for it to come through and finally picked it up at city hall? Yeah, you don’t really have to think too hard about that. Like I said, she’s the best. 

Today, yesterday, and ereyesterday: fruit tart

This Tuesday was my 90^th day alive since I got my cancer news. My wife worked that day and we didn’t have anything special for dinner and nothing at all for desert. I was kind of depressed at all the nothing. I knew the main of our celebration was going to be held Wednesday but to have nothing for such a momentous day was kind of a let down. Like not getting the present you wanted or something for your birthday. Not quite as bad as thinking everybody forgot it, but still. Not happiness was the main condition of the night. Then the next day rolled around and my wife’s skin condition still wasn’t improving so she wanted to go to a different clinic for a second opinion. I agreed and we planned on going somewhere the next day. What’s one more day after all? But still, the moment was slipping further and further away. Kind of wondered if she had forgotten. I mean I know she hadn’t, but this skin thing has really gotten to her. Her skin and face are very important to her, as I said before, so she’s really been down about it. And as I also said before, she’s not the most patient person so she wants something done about it now so I understood how she could be distracted. She did buy a fruit tart when we went to Aeon later that evening and we had it after dinner watching the second to last episode of Breaking Bad. The commercial break comes and she goes downstairs for the tart. When she comes up there’s a candle burning bright on my slice. I almost cried. It was a little thing to be sure, but it meant everything. My wife is the best and I love her so much.

Bag Gotterdammerung

It was disastrous. It started this morning when I was talking to my brother on Skype: the bag’s seal on the side wouldn’t close no matter how many times I smoothed it down. It became this standing gap where I could see the shit inside. I plugged it up with tissue paper but the gap got larger, more tissue paper, then I saw the surge of shit and the tissues, more and more of them, became a dam. But how do you dam something when the rest of the world is ripping apart? The bag’s seal was giving away from top to bottom, finally I had to tear the damn thing from my belly and deposit it in one of our pink smell-proof bags (they really work too). This part actually went down smoothly, the shit was contained by the tissues and I deposited the bag without a typical clumsy drop. The shit smeared around my stoma, all over my belly, was another story, but in the end all that really happened was my t-shirt fell back on it for a second, and some brown flecks got on my trunks that I use as pajamas. The rest was clean up and waiting for my wife to come back so we could apply a new bag and start this comedy of bags and seals all over again. Well, there was trouble with the last time as well, accompanied by the pervasive stink of diarrhea which makes me think some of that liquid stuff insinuated itself under the concave shell which is the bag’s central sticking point. This time I don’t know, a continuation from last time? The bag was supposed to be the top of the line too, from Sweden where they make the best colostomy bags, and water proof (never got to see its water proofness in action as yesterday I didn’t shower, oops). It was kind of depressing and I’m worried about what’s going to happen to this bag I got on now, but these are the kind of troubles that paying for so much more. I guess it’s a good reminder, like hey I am troubled by stoma, give me all the benefits and discounts you can?

Scary

Last night around two or something in the morning when I was doing my usual lying on the bed waiting for my wife to finish all her neko chores so I can take a shower (man, that just sounds bad on me, unfortunately it’s true) when she comes in bent double. She crawls onto the floor, rolls onto her back, and lies there. And that’s how she stays for awhile. I hold her hand and wait till she can talk again. Finally she tells me her stomach was hurting so bad she couldn't stand straight and for a while she couldn’t even breathe. God to think if anything should happen to her… A lot of scary thoughts went through my head. And shameful ones, like how I wouldn't be able to take care of her like she has with me. But after, I don't know, ten--twenty minutes, she got up there was no repeat of the occurrence nor did she mention a stomach ache again. 

Was it the fish?

The medicine she’s taking for her skin?

Something else?

Something else is always worse, isn’t it? Anyway, today is around Obon in Japan, vacations, people with time off and small shops closing here and there. Maybe her clinic? That’s where she’s going to today, her skin clinic, that medicine I mentioned isn’t working. You know, maybe I should be more specific on what’s wrong with her skin, but I won’t. I know my wife wouldn’t like it. It’s too painful for her, and I mean as in embarrassing pain not the physical kind, so I won’t go into detail. It’s not that bad, like some huge red blotch or something, but wife’s skin is very important to her, as it is to many women (didn’t say all, but with all those skin cream commercials and what not out there it would be impossible to believe women in market segment general didn’t care about their skin). Anyway, hope this is all we have to worry about with her health.

It was one of the things I was looking forward to

My nice comfy chair. One I can lean back in and write, swivel if I want to, travel around the room on its roller little wheels. Now the bed has supplanted it in comfiness, and I feel I can’t stay in it for too long without my back hurting. Worse, it has lost its hydraulic power or pump or whatever in the you know, pole keeping it up, stop if I'm being too technical here, so it is forced to its lowest setting. I feel like a child sitting in it, got to stack a couple thick pillows just to get some decent elevation. The weight of my ass and all that it transmitted was too much for the poor dear. Poor poor thing, but what am I going to do?

The Dark Backwards is cancelled today on account of a failing chair.

Don't die

I think these were the first two words my wife uttered to me last night when she came home. Well, probably after the usual tadaima/okaeri bit (I’m home, welcome back) and then she hits me with the two little words I titled this here post with.

Don’t die. 

Makes me want to look around for the gaping wound, or the doctor’s report, except she’s not full of tears or anything, but this strange energy. It doesn’t take me long to figure out what’s going on. Today she went to city hall to get my card (or I thought it was going to be a card) establishing my official credentials as a kind of tier two handicapped person. It’s because of my stoma, my asshole part II, the ume-boshi/maraschino cherry bulb below my ribs at the heart of my colostomy bag. It’s the thing I’ve long complained about, the lump of shit I have to feel against my stomach, the time it takes to dump the bag, the shit smells I can’t escape around the second or third day, that I have to live with as part of my life. I guess all that counts as a kind of handicap and now I’m entitled, officially, I have the little booklet not card to prove it, to things like free bus rides in the city, half off on trains, the green parking spaces (I actually don’t remember them, but I guess they’re like a second tier handicapped space) and practically free hospital care and medicine.

Yeah, that. No big deal. I mean we have to actually pay. A whole 800 yen max per payment. 800 yen? That’s less than eight bucks in today’s exchange rate. My wife said she was kando suru or impressed. Her eyes were more than a little wettish with tears. We’ve already gotten so much help from the people who love us and from many we don’t even know, and now the offices of city hall, who in the past have often been the pay up menace regarding health insurance, now swoops in to help us out as well. I'm not sure if this can actually be true now. Really? There must be something I'm missing, other fees, loopholes... 800 yen max? Really?

Anyway, if I imagine the problems I face with my stoma and colostomy bag as my handicap it becomes an embarrassingly light burden. By the way, yeah, I’m using that old fashioned word, handicapped. For one I’ve been out of America and don’t know the current acceptable term and two, the word handicap actually expresses everything that words like physically challenged do, but with more elegance and succinctness. As the Online Etymological Dictionary states: Reference to horse racing is 1754 (Handy-Cap Match), where the umpire decrees the superior horse should carry extra weight as a "handicap.”  An extra weight or something you have to overcome, it even carries with it the idea of being superior and that’s why you are given it. It’s hardly calling someone freakish or helpless at all. I know words pick up connotative gunk that drag them down to different if even opposite meanings and I guess that’s what happened with poor handicapped. Still for the space of this writing and talking about official ranks and parking spaces. I don’t think even I would ever call a person handicapped. Unless on myself, second tier of course.

A day without my wife

Sort of. Today is my wife’s most dreaded day. As in  really, it’s the day she probably dreads the most out of the whole working week. For one, she has to go back into work to face the little monsters, the ol Sazae-san blues of Sunday evening (Sazae-san’s an animated show that airs at 6:30 Sunday and has been on for longer than I have been alive or close to it: when it’s over all Japan knows it’s time to go back to work soon), and she has to face her worst monsters of the week. I will be sitting in my chair and lying in my bed, I mean, recovering from the multi-faceted turmoil of my guts and recharging myself in my unending struggle against cancer. I guess both are correct? And my manatees, specifically I will be targeting them, trying to stay off my feet as much as I can, no heavy walking, keeping them boys elevated. It’s disturbing to see them, my feet, swell up every night it really is. I will also be watching Dr. Who and eating pizza.

On the blessed topic of pizza, leftover microwaveable Costco pizza, and for the purpose of record keeping, it’s nice to note the continued growth my appetite. I didn’t even have to go through a series of restorative belches to keep me going as I went through a new batch of the mother’s sweet and sour pork and then topped it off with a bit of blueberry tart (Costco, again). Today for breakfast, potato salad and yogurt and then a chocolate chip infused granola bar clearing 300 calories for breakfast easy when I used to struggle around the 200 range. 

Great, kid. Don’t get cocky.

I know. I’m still cautious when I eat, still pull back and toothpick my teeth, try to fully chew every bite, that sort of thing. And when my stomach tells me too, I usually walk away. Or you know, not eat that last hunk on the plate that would just put me in barfing territory (man, I was looking for any excuse to use the word barf). Probably finish all my pizza today, two slices worth, no matter what my stomach tells me. If the slices aren’t the enormous ones, I should be okay.

The thrills of record keeping. Record keeping! 

A lazy Sunday afternoon

We were watching the Carp pound the Giants in the late innings (1 run, 2 runs, 3 runs motherfucker) of an afternoon game, or I was watching and she was keeping track as she read her manga off her smartphone. I kept my feet elevated on the bed by her legs, under her arms that kind of thing. Sometimes I’d ask what manga she was reading and if she could explain the plot some, mostly I was quiet and let her read. Once she did a mini massage, smoothing down the manatees. When the Carp scored my wife would cheer, when it came off the bat of a slumping Maru she clapped and everything, delighted in the tiny smile he allowed himself. Ureshii sou, she said. He looks happy, or more like, look at him, he can tell he’s happy. Then she looked up cute and funny animal pictures on her smartphone and showed them to me. I was awwwing and laughing along right with her, something I’d usually never do. Although come on, a polar bear cub who hasn’t learned to crawl yet paddling his way on the zoo grass? D’awwww.

Going to be depressed tomorrow when she goes back to work, but it’s only for two days. Then after that… well, talking about the future of this week does start up the worries, can’t help it, related to hospital Friday and the unknowable result. So I don’t want to dwell on it now, I think I’ll save that wonderful dwelling for another post, get it all out in words, but for now, we have Wednesday and Thursday to do whatever and we’ll still be together Friday. Hell, what more can I ask for out of a week (or the weekdays)? 

3:00

Is closing time for many restaurants here, the time between lunch and dinner, which is why if you want something to eat then you’re better off hitting some chain sort of deal. Hell, we thought Mochi-mochi was that chain. Hell, it was open last time at 3:00, I remember that. Then other people started rolling in. Didn't seem like that much of a problem for them. This time we were met by a waitress at the front: closed now, come back at 5:00. We couldn’t wait till 5:00. Man, I can’t tell you how disappointed I was. And hungry. Our beautiful plan... Fuck fuck fuck and so forth. Then I remembered there was a Jolly Pa or Jolly Pasta in Fukuyama. 

It might not be Mochi Mochi or fresh pasta, but I've always liked Jolly Pasta. Definitely on the top of the list for family restaurant pasta, which doesn't sound like high praise, but like I said, I like their pasta. Okay? Okay. Anyway, I used to go there quite often when I lived in Saijo, back when I was working in an English conversation school there with my wife who was something like the manager/secretary. So yes, that's where I met her. Anyway, I'm not going into that story yet, just about pasta now and how Jolly Pa would’ve been the perfect place for me to go back in the day, but no free refills. Now, free refills a plenty, but I haven’t been in nine years. Agony, low rent irony, agony, because there are no locations in Mihara (I like to write, get free refills, you automatically know that right?), and when we went out, my wife and I back in the day, it was always to some all-you-can-eat place. Now all-you-can-eat probably wouldn’t be worth the price. So hey, why not Jolly Pa now? It was pasta, I wanted to eat pasta, and now was the chance. And I had this image of pulling out strands of pasta, still creamy from the sauce and possibly sticky with strands of cheese. That’s what I wanted. 

It worked until my first bite of the chicken in it. Then my stomach clamped down and told me I was full. So oh yeah, that’s what I had when we got there, chicken mushroom pasta in cream sauce and mozzarella cheese, pretty much what I imagined. And it was good, filling, and though it was no problem continuing past that premature stomach clamp down, man it was tough going toward the end. I think that image, that cream sauce image, that was maybe what I wanted for the first two bites, but give me garlic any day like last week in Saizeria, that’s what I really want. Oh well, if I hadn’t had it yesterday, I’d be chasing it till I got some later. Might as well get it out of the way now. My stomach was okay at the end too, yea, got a few chances to walk, but mainly I enjoyed the day riding around with my wife. I guess the real story is all the places we revisited that we hadn’t been to in over a year and how good I felt with her. But that's hard to write about. Gots to go into intangibles and stuff because there's nothing concrete, few examples I can give besides bits and pieces of conversation here and there when often I felt good just sitting next to her in the car. How do you explain that? But you know what is easy to write about? Pasta.