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