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.

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.

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.

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

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...........

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

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. loosed, loos·ing, loos·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.