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Saturday, December 14, 2013

FIVE PLUS Merry Christmas

Merry Christmas and Happy New Year,
and anyone who celebrated Hanukkah, 
I hope you got something you wanted on 
each of the 8 days of your Festival of Lights...

Saturday, November 23, 2013

Howdy from FIVE PLUS

Waiting.

Yes, still waiting, although in the meantime I visited with my oncologist here in Portland.

We had a nice chat about IL-2 and the possibilities of immunotherapy and the decision to put me back in a holding pattern by the BIDMC doctors.

We scanned the images he had available, although he didn't have the latest one, and we checked out the pretty much static existence of that little colony of muthafuckers living between my two lungs. It's actually a lymph node hanging out just below the branch of my windpipe and while he measured it, it showed almost no significant growth.

And we looked at the possible site of another metastasis on the pancreas, but how they could believe that it is also kidney cancer without a biopsies I dunno, because the pictures don't show anything of anything that remotely could be said to be anything.

But I am sure the radiologists who study these images like to say what this is or what that is if they see some anomaly.

Well, fuck them.
Hanoi, Vietnam, January 2013

Sometimes there is just shit in there that isn't cancer. Just aged organs, which I have one, but we won't go down that road.

My doc here looked at the tail of the pancreas and we studied it for a awhile, but really there is no way to tell one way or the other. Although the Doc didn't say that, that's my logic and without a biopsy it's just guess work based upon what they see in my chest, which they know what it is because they did do a biopsy.

So, I think Doctors and technicians can get a little overheated seeing something in these 50 shades of grey that are the imagery from the C-scans and say what this shadow is or what that shadow is.

They dunno and while they are making an educated guess, it's still a fucking guess.

SO, I do have cancer that has metastasized, I already knew that, but it doesn't mean that everything that is abnormal on one of these scans has also got to be cancer. I mean, come'on man, give a patient a break.

And, what if it is a small Deathstar Colony…so what.

Fuck them.

Thursday, November 14, 2013

Update, November 14, 2013

My friends in Chile.
Well, another scan has come and gone. And this week I took my compass and pointed it toward BIDMC where I was scheduled to have a meeting with my doctors who would provide me with an assessment of the scans.

The most difficult thing to do is to wait.

And.

That is what they have decided to do.

The IL-2 has shocked the cancer, as the Doctor said. And instead of throwing me back into the IL-2 pit he has decided to be more circumspect and WAIT.

I don't know about you but when you know that you have a cancer, and that it is metasizing at not a great speed, but it is still there, waiting is not my first choice. In fact, I had convinced myself that I was going back in the hospital this December for another round of IL-2. Not because I am enthusiastic about the side effects and the lingering effects of the treatment, but that I would be doing something and not sitting in the corner.

The Doc's know best, I guess.
Getting ready to kick some ass.
One of the cancer sites has remained static, no growth and maybe marginal shrinkage.

The primary site had stopped growing on the last scan but has shown modest growth since.

So, the little fuckers are still in there, and unlike those sorry folks in the Philippines, they have survived the first attempt at dislodging them from my body.

But, not to fear, Doc says that in the spring the FDA will be approving some new PD-1 drugs that he intends to use. As he noted, the IL-2 is a 10 on the side-effect siesmic chart, and the PD-1 drugs are more like a 3 and to receive them no hospital time would be needed, except during the period needed to administer the drugs to me.

I get to cool my heels for three months until Feb with the wonderment of what are these little bastards up to in there. In my chest to be specific.

For any patient undergoing whatever therapy, the hope is that when you see the doctor the conversation will revolve around the tremendous success the therapy has had upon you. In this case, me. But small victories are sometimes the ones we have to come to grips with, and that further small victories are really the signposts of the road ahead. For me, the cancer is at a manageable stage and more drastic procedures, like having a death ray zapped into my chest to burn out this band of unwanted settlers can wait, and with luck, never having to be considered again.

Wait. Waiting. Waited.

The news is that I have to wait. For me, generally speaking, I have the mindset to carry on and wait, mostly because I have no choice, but I have to overcome the idea that I was readying myself for battle and now the boats have to go back into the harbor and D-Day will be postponed until some later time on the calendar.

Fuck.

I am just a specimen and a host for some rebellious cells that have attempted to create in me a colony of little devils that have a suicidal goal. But the host is not ready to give an inch to this butt band of bandits and the battle will continue. How's that for alliteration.

So, waiting it is.


Thursday, October 31, 2013

World Series Victory 2013


OK, so all those late nights watching baseball have paid off this year for Red Sox Nation. Just getting to the playoffs was great, as it has been all year as the Team picked up game clenching victories in the late innings as though the baseball gods had deemed them and given them the edge to victory. Last night the win seemed inevitable as the game started and the timely hits kept coming as they were suppose to, to give the Red Sox a victory not just for baseball, but for a region that saw in them a spirit of resilience that reflected how we want to be. And that is to pick ourselves up after a loss, or tragedy, and to come back Boston Strong and to not give up. For that, the Red Sox have validated those pedestrian wants for the home town (region) to win and to represent in the small way a sports team does, that striving for victory and not giving up is a victory in itself and it is an example around which we can CHEER!

"Make yourself resolute with the idea that you will win whenever you go into battle, and you can win even if it is not so realistic." Bushido Code

Friday, October 18, 2013

UPDATE: 1st scans after IL-2

Greetings.

Getting Ready for the Big Game
Just an update after seeing my Docs this Wed. TH, and Fri.

I had my first scan after treatment a week ago Monday and this Wed I met with my IL-2 Doc at BIDMC.

As expect no information upon which to base and further treatment or therapy.

Good news is that everything seems static, which means no growth or further metastasis that can be determined.

Bad news is that I have to wait another month to get another evaluation, upon which further treatment will be based.

So November Ho.........here I come.

Overall, feeling good and physical on TH indicates that I am the healthiest sick person in Maine and there-a-bouts.

Will write more soon, but busy in Maine and new manuscript demanding time....and the Red Sox are about to make history.

best to all, tim 

Thursday, October 10, 2013

Silver Wizard Battles the Little Death Stars, or the need to take a piss

I had to go get my first scans yesterday after my initial treatment of IL-2 a month ago.


I was on the T (Boston's Metro). The Greenline is somewhat like an old trolley squeaking and knocking as it finds it way beneath Boston's history. We passed under where the terrorists had so recently exploded home made bombs to savage young and old alike, and for no reason other than through the twisted perversity of their own ambitions and faith. Fuck them and their kind.

I was joined by four intrepid travelers, maps in hand, trying to negotiate the city's plan. Well, at least one was the others sat back with smug expressions of tourists who somehow were above the day to day menagerie of this great city. It wasn't long before I became interested in one of the women in the group. She maintained this odd expression, something of a smile, smirk, or some self-satisfied expression that god had given her to live her days with as an outward expression of her vacant soul. God has a peculiar sense of humor.

Or may she was just an idiot, another joke from on-high.
Idiot Smiles

Dunno.

We all got off at the Fenway stop and the the four were left behind me as they tried to decipher in which direction they could find Fenway Park. The woman still looking an odd mix of village idiot or debutante.

I made my way to the hospital where I had my blood drawn. Piece of cake.

After, I had to go get a Cat-Scan in another building. The complex of hospitals in Boston is daunting and inspiring in the same light, just waiting for the government to screw up our health care. Think Amtrak or the Post Office with a gurney and a box of needles. Not hopeful in that area.

Anyway, the fellow giving the scan was surprised when I told him how many scans I have had (18 in five years), and will have over the coming months (4-6 within the next 6 months).


You get the picture, eh.
I told him that after a few more my dick will look like Luke Skywalker's Light-Saber, but if we can kill those tiny Death Stars in my torso, it will be a sacrifice well worth it.

I am no Luke Skywalker, but maybe Obi-wan-ka-nobe...I always wanted to be the wizard Gandalf, or the coolest of the Jedi Knights. The other rat like Jedi, well, no thanks, but Kenobi, well yeah baby.

Next, on the agenda was my MRI, even a wizard has to keep appointments.

I got in early and before I knew it I was inside the tube with the sounds of an African tin drum band pounding out the sounds that resembled what I imagine the sounds would be like if Robbie the Robot was fucking R2D2, or that other one, Catch me if you can CP3PO, or something like that. Lots of pounding, grinding, and whistles until finally the attendant said after about 45 minutes that my time was up. I asked him if he might like to rephrase that, because I am in no way feeling like my time is up. He laughed and then said that my tests were over with.

On the way back to Logan Airport, where I work, I sat wondering about the vunerable position patients find themselves. When I was in the hospital, it wasn't the big events that seemed an issue, I was just an involuntary spectator to those, it's the small things that make you feel helpless. Like not being able to pee when you want, or to get up and just stand beside your bed without a  series of alarms going off at the nursing stations, rousing a platoon of young Nurse Ratchets coming to help you get back into bed and to see just how strange you have become by the toxic soup you have consumed.

I remembered an excerpt from a book that described the Battle of the Chosin Res, during the Korean War. The Army and the Marines were savaged by hundreds of thousands of Chinese in a surprise attack as the US military was pushing through the mountains of northern Korea. In a lull reporters were allowed into the middle of the battle scene where they were still surrounded by the Chinese, many wounded who had been through the hell of battle in the snow and cold lay in a line waiting to be evacuated. One female reporter, true story, was working the line trying to get information. She knelt down next to a wounded soldier and with great sympathy asked what she could do for him.

File:Evacuation of wounded Marines during the Korean War.jpg
He was bundled in his military gear as well as extra coats and blankets, he looked up at her and said, "Well, if you can figure a way to get three inches of dick out of six inches of pants and jacket so that I can take a piss, that'd be a start."

It always comes down to the small things, those basic functions, and when those are gone we begin to really feel the misery of our vunerably.

I remember a fellow I worked with at an airport in Maine. Small airport compared to the big city airports I am familiar with now. He was older than I, and looked like he had never been off the farm, but to buy feed  for his livestock. Anyway, life had now deemed that he lift and tout bags for the airlines. Nice guy, buy he had a strange habit.

One day when I was entering the men's room, Lester (useful name) was standing at the urinal. He normally wore bib overalls and had many other winter garments on, as bundled as were the GIs at the Chosin Res. He had removed most of them and dropped his overalls to the floor exposing his backside in all it's pale glory.

I said, Lester, wow, what's up buddy, why don't you have your pants on.

He didn't seem to think anything was the matter and just shrugged.

Well, at home we have a three holer, two for my wife and I and a smaller one for the child. We don't think anything about it.

I told him that while he was a fine cut of a man, seeing the cleavage that split his rear was something he might want to keep between himself, his wife, and the wooden splintered settee of his outhouse.

Strange thing, he never did. Those of us who used the men's room many times found ourself confronted with the pale complexion of Lester' backside as he stood pissing into his porcelain friend hanging on the wall in our restroom.


I wonder how he is doing. I also wonder how the smug or simple folk like the ones I had seen on the T react to that inevitable day when the doctor says you have a cancer or a something something illness. Does it really matter which one. Well, maybe eventually it does, but in the short term, it's the shock of something new in your life over which it will determine some control, or until it kills you.

In the mean time I am becoming the Silver Wizard with powers that I hope will extend to my ability to find a urinal when I need to.

So, fuck you to the little Death Stars that try to end our time and interrupt my toilette.

Yes, let me say it again.....

Fuck you little Death Stars.........

Friday, October 4, 2013

2013 Maine Fall Colors and other things the Government can't control, yet!

Locke Mills, Maine

















Greetings from Maine....... 

Just thought I would post some pics of something more pleasant than my health story, which may just have a happy fuckin' ending.

My mother is here in Maine and just celebrated her 83rd birthday with us. We had the opportunity and a great day to take a drive to see and enjoy the autumn colors in north western Maine, Grafton Notch State Park.

Fortunately it is a state park so the National Guard were deployed at the National Parks we have in the state to keep soft minded peasants like ourselves from entering and enjoying the natural wonder of our state.


Go State Parks!



So barring any online censorship from the OMB (Office of Management and Budget, the folks that control the funding for such mundane stuff as paying for national parks and staffing, world wide) I am posting these pictures with the understanding that the Black Helio's of our government may at any time start hovering over my home and photographing me every-time I walk my dawg.

By the way, the OMB are also the folks responsible for closure of military cemeteries around the world, the first time this has happened even though we have had 18 other Government shutdowns. I only hope they get it right this time and stay shutdown. The OMB should be changed to ONB (the Office of Nuisance and Boobs).

Anyway, feeling better and trying to stay away from the TV, because I understand that the Black Helio's use the TV as a honing device, especially if you have FOX news on. That's a dead give away. And, really, how can anyone watch Sean Hannity, he's almost as annoying as Chris Matthews.

Enjoy the pictures and then read a good book. Click on any of the pictures here and they will take you to the photo album on zenfolio where there are 54 images of leaves, light, and rock. Click on Slideshow and take a minute to relax and enjoy the natural wonder.

Fields and view on the approach to Grafton Notch State Park.






Sunday, September 29, 2013

Heart Stone Thank You

HEART STONE 2013

Over the coming days, weeks, months, and Dog Years, I will be expressing my thanks to as many of you that I can. But in the mean time I wanted to post this Heart Stone as a general thanks for all your support, kind wishes, and free food that has come to our home. My ordeal is not over, but I am in a bit of a cul-de-sac to gather my strength for another go. So, in the mean time, thank you and my best wishes to you all.
Large Heart Stone found at Ft. Williams Park. Probably about 18-24 inches long and very heavy. It also reminds me of an ancient image of a bird, but we'll go with the heart stone for this entry.

Saturday, September 21, 2013

Renal Cancer Il-2 2nd week: Dancing with the shadows

SECOND WEEK - First Sesson: IL-2 Treatments

It's almost been a week since my release from BIDMC. As readers you could see that any blog I made in the immediate aftermath of my stay would have been an exercise in spellcheck and code deciphering. 

I have wanted to talk about my 2nd week and go day by day with brief descriptions of what the treatment is like and how the side effects impact the body and the mind. Obviously that impact is personal to a larger or smaller extent for all IL-2 patients, but I think by describing them some commonality with be found.


DAY ONE:

We, my daughter Emily and my wife Terry, left our home at 545AM on Sept 9th. We thought that if we left earlier enough we could get ahead of the Boston traffic and get me in to the hospital on time. Well, we were cruising until we hit 128 westbound and then the mess of I 93 southbound into the city. There are other ways to go, but once committed there we were for about an hour and a half, until we got the Storrow Drive exit. Getting off at the Kenmore Square exit, which is also the Fenway Park exit, we shot up Brookline to the hospital. I jumped out at the entrance while Emily and Terry found a parking spot for the car.

I went up to the 11th floor of my wing of BIDMC and went to the check-in. 

FIRST. 

A nurse I had had the week before greeted me and pointed me to my room. Being first has it's advantages because it also sets you first for all the preliminary poking and probing and sticking and greeting for those in my group, of which their were five. Irony, no?



So I go into my room and as noted earlier I get into my Johnny and prepare myself for all the stuff that will take place. Nurses and administrators come in and go out posting information about me or just leaving paperwork relevant to my case. IL-2 patient, Week 2.


About this time I turn around and Emily and Terry have arrived. Terry, like the first week, is dragging her over night bag because she has signed on as the key spectator to my time in treatment for session one. So we get settled and await some initiation of my treatment.

Not long and my NP comes in, Virginia, a very nice person also originally from Maine, and I answer all the preliminary questions. Shortly there after by 10AM, the surgeon comes in and prepares to install, for the lack of a better word, my central line.

CENTRAL LINE: In medicine, a central venous catheter ("central line", "CVC", "central venous line" or "central venous access catheter") is a catheter placed into a large vein in the neck (internal jugular vein), chest (subclavian vein or axillary vein) or groin (femoral vein). It is used to administer medication or fluids, obtain blood tests (specifically the "mixed venous oxygen saturation"), and directly obtain cardiovascular measurements such as the central venous pressure.




If you haven't had a central line, good for you. It is a limited surgical procedure to get the thing in and it hurts like hell. IT requires the surgeon to push that catheter into the vein until it is inside the heart. IL-2 patient get this so that when receiving the dose of IL-2 it goes immediately into your personal pump, the heart. We did the whole heart thing last summer, so my pump is in exceeding great shape. 

After the install, X-RAY verifies the location of the central line, and then, basically the patient, me, waits all day until they are ready to give you the first dose, 4PM, or until the pharmacy has prepared the stuff. Again, being FIRST means that my dose is the first one administered. This all becomes important when you realize that the surgeon, after installing the second central line in the patient that came in after me, had to be called away to surgery and the other patients had to wait a good deal through the day to get started. 

So, good for me.

Around mid-afternoon my daughter leaves and returns to Maine so that she can beat any northbound traffic, which she does and both Terry and I are very happy about that.

430PM: First dose. 

Now all doses are cumulative, including those from the first week, so side effects come all the quicker. Anti-diarrhia medication is given at the same time to limit that side effect. I feel good to go and have no feelings of nausea or nausea from the other end.

Lots of time spent watching TV and shouting at the news. 

Short walk, but basically because this is my second week I am confined to the bed.

Not good kimoshabee...

But there it is. In the bed I good, like a member of Ahab's ship striking out for the white whale. 

Call me Ishmael.



DAY TWO:

Second day means I have had 3 dosages, 4PM, 12PM and 8AM on Tuesday. Virginian comes in and informs us that all seems golden and I am taken the treatments in good order. I am already pissing the color of a long island ice tea, but that's part of the game, and everyone is happy with my progress. There is talk of spacing out my dosages through the week so that any side effects come on more slowly.

I'm good, whatever is decided is decided and I'm good to go.

Day Two is uneventful, except for my rising temper at the insanity of what I am watching on the news, which is driving me nuts'o. 

My first week I suffered somewhat from the rigors. That is a significant case of the chills. They bundled me in blankets, warm, and gave me medication to make the child go away.

Not good kimoshabee...




















DAY THREE:

Another banner day! Terry has taken some time and walked around Boston, being amazed by the Prudential Center and the fact she didn't get lost.


DAY FOUR:

Well, I am flying through this treatment plan, or at least I thought so. I am figuring that the side-effects aren't going to get me. But, and it's a big but, I am having trouble with a few things. Not really as embarrassing as you would think. Can't piss, normal side-effect. I have this plastic thing into which I am supposed to go, because they don't won't me up and walking to my toilette.

Trying to piss side ways is not impossible, but when you have the urge, and they show you by ultrasound that you have no urine in your bladder, you get, well, pissed off. So I struggle with this most of the day, but by early afternoon I am rolling around on my bed in a lot of discomfort. I am watching the TV and looking around the room and I am seeing what appears to be large photo type negative overlaying everything I am looking at.

Hallucinations arn't always of flying watermelons driven by alien asparagus. Sometimes they are more subtle and depend upon one's own interior world and not the fun drug driven world of one's youth or someone's else's imagination.

So my team jumps into action. and they have me lay back and find that my blood pressure is dropping like the front end of the Titanic.

Not good kimoshabee...

NP stands at the end of the bed shouting commands like Admiral Farragut shouting, Damn the Torpedoes, full IV's straight ahead.


Now, from my angle, I am laying there, not feeling particularly involved in the entire event as nurses tap this line, then another pushing drugs into me so that my blood pressure rises to a level by which I will live to see the sun set that afternoon.

And, just to top it off, my concern is that I still can't piss in that plastic urinal and all I want to do is get up and go to the bathroom. I mean, really, we all have our own priorities.

Before and after the blood pressure event, after which I do not receive any more IL-2, having maxed out the week at nine treatments, I am constantly negotiating with my nurse about getting onto the toilette. 

Not happening is the short side of that story, so I, now in the process of loosing my mind in the limited fashion that I am, become focused upon the bathroom and taking a piss.

Fortunately they give me my Ambient for sleeping and out I go. 

Terry is on her cot and at that point who knows what she must be thinking as she watches me go from docile patient awaiting my treatments to a grumpy and surly animal wanting to take a leak but can't even when giving the opportunity.

The nurse, who we will call Ratchet, just for sentimental reasons, begins to acquiesce to my needs allowing me to sit on the side of my bed where she can watch me urinate. Now I am not a modest person, but peeing is normal;y not a spectator event for me.

Not good kimoshabee...


Failing the side of the bed thing, later she lets me stand holding the little plastic urinal in front of me while she watches, I lean against the door of the bathroom for which I am greatly desiring the opportunity to go in and sit down. 

Well, Nurse Ratchet will not let me go there.

She leaves.


I forgot to mention that my bed has an alarm on it so that if I do try to get up the alarm will sound the a number of nurses will rush in to the room to see what the patient is up to. More to come....


















DAY FIVE:

Early in the morning I am still pursuing my ambition to get to the toilette.  I learn how to shut off my alarm and get up. But because my mind is somewhere between here and there, I get out the wrong wide. I had already tried to enlist my wife Terry in my bold plan to achieve the pleasure of sitting on my porcelain playmate. 

So in comes about five nurses who scold me about getting up and get me settle back in my bed.

I threaten them that I am going to teaching all the other patients how to turn off their alarms and we will make our escape to the men's and ladies room down the hall!

They didn't seemed to concerned with my babblings.

They knock me out with something.

Morning DAY FIVE.

I wake up and the first thing I shout is "Communist Bastards."

At whom am I shouting? I don't know.

I believe at that moment that I am and have been in a war in Bombay against Communists. The balance of the conscious mind is a delicate thing and once it has achieved a toxic level, either through social means or medical means, well, everything get fucked up.

This carries on until slowly I begin to come back to earth, having taken Mr. Toad's wild ride into the world of IL-2 side effects. My trip was not as extensive as others, but I still my have another opportunity depending upon further treatments in a few months.


DAY SIX

Feelling like shit, but learning how to piss in a sitting position. Good information for in patient survival techniques. Pissing sideways just doesn't get it done, man.







DAY SEVEN
Going home, feeling like the core of energy has been pull from my chest, for which I am still trying to find my stamina. Week long side effects are feeling miserable, edema in the legs and feet, peeling of skin, itching, and general feeling like shit, did I say that already, and itching.

Today, Saturday, September 21, I am taking a day off from exercising, of which I have been doing the past few days to rebuild muscle tone, and generally taking some time to get some of these experiences into the blog. Felling somewhat drained.

In the big picture, these are just my experiences, but I have talked with others going through this process and they share what I have been through and probably had had a worst time of it. A Chemo nurse told me that IL-2 is the worst treatment by far, but once you are done the benefits have a high rate of success. I concur with that from everything I have read about it, it is just getting through the treatment that is the ordeal to push through. 

Well, I have more to say, but hope to get back to other topics, like Chile, and my travels in the Andes, but my subject here will be returned to from time to time as needed, Best to all, jack

Not in a good way, but swelling is going down and starting to feel better.





Wednesday, September 18, 2013

Getting Better.

Well, what doesn't kill you makes you stronger....never really liked that phrase, but after last week I'll lighten up a little and go with the flow.

Many things occurred, such as touching base with all the side effects in the IL-2 manual. I checked in on time, because I am punctual in an obsessive way, which is good for the type of work that I do. So in my room I go and now as a one week experienced IL-2 patient I strip down and get my Johnny on.The Johnny is an amazingly simple but efficient piece of clothing. It allows full access to the body by keeping those parts that are closed for public view to remain somewhat hidden. But, after you are in the hospital for a while, you loose all that modesty and whoever comes in the room and has to poke around under the Johnny, well, you just wave them on to do and touch, and search for whatever they need to do.

Funny story. This summer while getting ready to be released after my CABG4, or in lay terms, the quadruple bypass, my young nurse had to come in and remove my heart sensors. She was able to easily get the ones nearer the top of my body but I had a few nearer the the modesty zone. Without looking, as she was trying to be nice, she was reaching down and trying to find the sticker sensors in that area. She looked at me with a helpless look and I was just smiling understanding her ordeal. I said to her that just go for it and don't worry about it because it seems everyone has seen what I have anyway, and it's not much of a story. She laughed and looked down inside my Johnny and grabbed what she was suppose to, and then smiled again, and our moment was over.

I have more to say, but just wanted to let you all now that I am now recovering from the second week. That recovery is longer than the first week because the treatments are cumulative. So, now time to recover and then get my scans coming up in October and November. The November scans should indicate what damage the treatments of IL-2 have had on the little outposts of space alien bastards trying to colonize my body as a host for their fucking limited futures. So, more to say in the coming days, and thanks for all your best wishes and kind thoughts.





Monday, September 16, 2013

Home and tired....

Hi,

just finishe  secone week of my first session at BIDMC....

sode effects kicking in prettty much but should be gone by the firt of the week while I work on my stamine.

I will write more tomorrow or as soon as possible. right now pretty uch pooped out and will work on getting some rest tonigt.

Hope you are all well, tim

Monday, September 9, 2013

FIVE PLUS: 2nd Week IL-2 treatments

Greetings,
Thought I would send out one last missive before the onslaught of biological agents they have set up Here I am at BIDMC awaiting my 2nd IL-2 week and the biological cocktail they will have for me and will give me at 4PM.

Left the house this morning at 545AM only to arrive on time at the reception desk at 9AM. I128 and I93 were horrendous and it took as long to drive from Peabody to hospital as it did to drive from Maine to peabody...which was actually quicker.

Been prodded, poked, blood drawn, found to be a specimen  of high quality, but unfortunately this is not a breeding program and before I know it the side effects are suppose to come on sooner, which means hey diddle diddle, the cats got the fiddle, but the dog's got ....well, it's a more messy story from here on.

My mentor said that I would peal, and that my face would look twenty years younger. My face didn't peal, but my feet did, so now I have feet that look twenty years younger that the rest of me. Can't see any advantage in that.

So, I may be out of touch for the rest of the week as I participate and do my part in receiving my treatments, and becoming a success story for my doctor. He's a nice guy and I'd like to do that for him. He indicated that while more treatments are expected down the road, probable, there are other agents that he is using that are milder and will support the initial attack on these Renal Cell Assassins. But to get there I have to be here. Anyway, I hope they are making the paper for the book they will write about my journey through the IL-2 treatment plan, with additional chapters devoted to my surprise CABG4 (pronounced cabbage 4).

And one last word,

thanks to all of you who have been reading my play by play through these health issues, and thank you for your caring thoughts and support. To know that I have some caring people, friends and family, out there having positive thoughts for me is very helpful.

My best to you all....Tim , aka Jack...........

Friday, September 6, 2013

FIVE PLUS: A Step Back.

Just a few words before I start my second round of IL-2...and also to take a step back.

Having any illness is not a kind experience. If you are small child and suffer from a bad cold or the flu, that feeling like your head is going to explode seems like the worse experience in your life, and it may be, if you are lucky.

Older and somewhat wiser, or may-be just older, you realize that illness are debilitating and many times lethal. My own sense of the absurd when faced with the on-going story of my own health is only partly to mask the deep feelings I have for my life, sharing my families lives, and exploring the world with that odd sense of, "no shit, how'bout that."

My own story of how I find myself here, at the age of 61 in the middle of cancer treatment, which all indications are that I will receive a new bill of health, or at lease a new rental agreement, is uninteresting in its own telling. But, when thrown into the well of humanity, who also are trying to improve and enjoy their lives, we collectively have only one option for survival, that is to be the battle ground on which the medicines we have in our time confront and wage war against the illness we have, grave or not. And, during these ordeals we can only be the small black anvil against which the hammer of hope taps out a tiny and brassy sound behind the facades we erect to the world.

Despite the ordeal of what I have had to endure this year, I find myself at a time in medical history that certain cancer is being cured and I may have my own small mutant fuckers strangled like the little medieval bastards they are. And, Really? having my chest sawn open and then having a chemo like experience to cap the experience, well, it's slightly unusual, but compared with many I have spoken with, like Steve (my IL-2 mentor) my ordeal is really enough for me.

And others on the floor at BIDMC, like other oncology units around the country, lay and take on the assault of CHEMO, RADIATION, or biological (me) treatments that will extend or cure their illness. Many are too old for some treatments, or too sick to be the anvil on which modern medicine can anneal some new measure of strength into their immune system. It's a sad thing to say, but when I am able to walk through the unit, which is only on the first day I am admitted, the sights and sounds of life's end are calling out to many who share the floor with me.

MY only hope for them is that they did shit when they had the chance.

FIVE PLUS, baby, that's what I am talking about...live large, live small, but live and enjoy it...

As, Ali-Babbah,
Fez, Moroc, January, 1981, The Blue Gate




Tuesday, September 3, 2013

FIVE PLUS: Still Here with an update

Hi, 

Just thought I would stop by.

I've been busy this past week for those of you who have not followed the few words I attempt to punctuate here.

I was admitted into BIDMC (Beth Israel Deaconess Medical Center for you out of towers). There, I became what I must have always been intended to be - a medical specimen. I have always though I was a specimen of some sort but the problem with being a specimen is that you don't get to drive the moon rover, you are what the moon rover stops to pick up as a sample to be examined, tested, and filed.

Had a few Jack moments





Anyway, I took ten doses in all, before it was clear my body was becoming toxic. It is always unclear whether or not my mind is toxic so they didn't use that as a measure for how many dosages I would receive. Fourteen would have been the maximum, but I, my wife, and the medical team were all satisfied with ten. So, when I go back to BIDMC I am scheduled for ten, with some breaks during the application of the treatments. 



This time I went full bore through nine, and then they stopped on Thursday and gave me only one on Friday. 

TGIF!

This is about how I looked when discharged on Sunday.
Thanks Jack for the visual reference.

Side affects. Yes I've had a few. 

The one that was and is of the most wearing is the level of fatigue. I thought I was going to be tired, but com'on man, about Tuesday into Wed getting out of bed to do anything was exhausting, and because I was constantly horizontal I became dizzy pretty quick. Any reading or computer work was canceled the morning of the second day. Too pooped to pop. More about that in a minute.

The other side effect of some embarrassment

At the first part of the week the nurses and I referred to it as diarrhea, but over the course of the week our terminology changed to encompass other terms that applied to that particular activity, and as we all became more friendly.

Diarrhea.
Firmness of your stool? 
Are you having one?
Soft stool?
Nausea or indigestion?
Did you go today? And if you did, firm, soft, or just pain shitty?
And as the mind began to wander,
Loose stool,
and finally,
Loosey-poopie...

Looking up the word loose on the internet here are some other examples that would have been appropriate to our medical discussion of the bowels of an IL-2 patient.  

My favorite is LOOSED THE DOGS.


1. Not fastened, restrained, or contained: loose bricks.
2. Not taut, fixed, or rigid: a loose anchor line; a loose chair leg.
3. Free from confinement or imprisonment; unfettered: criminals loose in the neighborhood; dogs that are loose on the streets.
4. Not tight-fitting or tightly fitted: loose shoes.
5. Not bound, bundled, stapled, or gathered together: loose papers.
6. Not compact or dense in arrangement or structure: loose gravel.
7. Lacking a sense of restraint or responsibility; idle: loose talk.
8. Not formal; relaxed: a loose atmosphere at the club.
9. Lacking conventional moral restraint in sexual behavior.
10. Not literal or exact: a loose translation.
11. Characterized by a free movement of fluids in the body: a loose cough; loose bowels.
adv.
In a loose manner.
v. loosedloos·ingloos·es
v.tr.
1. To let loose; release: loosed the dogs.      WINNER
2. To make loose; undo: loosed his belt.
3. To cast loose; detach: hikers loosing their packs at camp.
4. To let fly; discharge: loosed an arrow.
5. To release pressure or obligation from; absolve: loosed her from the responsibility.
6. To make less strict; relax: a leader's strong authority that was loosed by easy times.


As you can see we all came to know one another quite well.

I am not this bad, just feel like it.
Again. Thanks Jack for the visual reference.

Now that I am recovering from the first round of dosages, I am taking a water pill, which you may be acquainted with for post-pregnancy therapy. And, yes, I am quite swollen. Although I only put on about 18-20 pounds, I have already dropped almost half that. My ankles look like I am carrying one very large kid, but it's only for a short period, and I am very humbled by the water gain of family and friends who have gained tremendous amounts of water during there gestational go-round.

By the end of the week they were wondering when I was going to have a vivid dream...hallucination in other words. Common side effect. No, that would wait until I got home the first night, when I found myself surrounded by grizzly bears, that were soon accompanying me on a white water rafting event, with BooBoo Bear as my companion. I always liked BooBoo Bear. I don't know if that made me Yogi Bear or not but we had the picnic basket and were high-tailing it down the Yellowstone River. 

I should be back to normal by next week, and do it all over again. I hope BooBoo returns.

Fun Fun.





Cancer survival & life adventures

Cancer survival & life adventures
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