In his words… JPS Journal Entry

John was a very eloquent writer.  To me he shines through in his words.  I can feel his personality.

Missing him, I wanted to read his words…  There was a notepad on the computer that has a journal entry, some random bike things which make no sense to me and something that he had made up for the farm website.

Here’s his Journal Entry- I don’t know the date, but it would have been shortly after his 2nd IL2 treatment…. probably May 2009.

JPS Entry — Well two down, and I’m home. Finally got a few minutes to sit at the computer and do some typing. In-laws are watching TV and feeding kiddo, Mary’s off doing something. A good dinner is waiting for me in the kitchen. Just don’t quite feel like eating right at this time… tummy’s kind of unhappy.

This go ’round was about the same as the last one. I was feeling very motivated going into it. My hip had gone from intermittent to constant over the weekend, I was running a bit dehydrated, and I was down a good bit of weight. So I wasn’t feeling like I had a running start and didn’t think that would be a postive to tolerating the treatments well.

It wasn’t looking good the day before admission, so we thought maybe I’d be getting bumped back, but a phone call on Wednesday, that I just happend to hear ring, got us out of bed at 7:40am and on our way with a goal of being there at 10am. Lest we be late, or we stood the chance of losing the bed. So I packed, Mary & her Dad got ready, and we headed off into the rainy, rush-hour morning traffic of I-95.

Luckily traffic flowed smoothly with only a little back up at I-695. We actually got there with time to spare. Not admission necessary head right on upstairs. I had Mary push me in a wheelchair. The right leg just isn’t working right anymore…

We were ushered into the room and within minutes I was hooked up to the IV’s to begin “hydration.” With the first dose planned at 2pm that day. The resident doctor came in the see me, and did his little deal. We talked about my hip & leg pain and how it was requiring a Percocet every 2 hours to keep in undercontrol and how I was going on 3 hours since my last pill. I got my wrist tagged and then I proceeded to wait until they brought me some pain medicine.

Of course there were no orders written yet, and with it being lunch time my assisgned nurse was “off the floor” so I kept getting fill-ins. Another doctor came into to see me and suggested Oxycotin, which is basically the same thing as Percocet, with out the Tylenol and in a time-released form. Mary begged them to do some x-rays to rule out broken bones. I writhed in the bed…

At 1pm I sent Mary to fill the prescription for Percocet we had with us from the last time I was discharged. I was going to get pain medicine on way or the other. I’d have to wait an hour for it to be ready.

I was at the point where I was ready to just go home and call it all off- no way I could deal with IL-2 if I couldn’t lay in bed comfortably. Pack it up, honey, I’m outta here…

Around 2pm one of the fill-in nurses had enough gumption to look at my IL-2 protocol and see that I already okayed for Morphine, so she gave me a dose of that. Finally the pain stopped, but that only lasted for about an hour and a half. I got my x-rays and believe they all came back clear. So that helped ease some of the wondering.

Eventually they got caught up with me and orders were written and it turns out that a couple Oxycotin a day took care of the hip pretty good the rest of the time there. It’s now my pain medicine of choice. Narcotics be damned, I’ll deal with addiction when we get there.

Around 3pm the IL-2 came up and I was actually feeling pretty good. I was looking better than I did at home and was ready to go. The doses didn’t go that bad. The side effects were about the same as last time. I had the shakes, and chills, and nausea, and vomiting, and diarreha. Most were well taken care of with the prescribed medicines. And my body handled it well. I had the typical high heart rate, low BP, edema, and low urine output as expected.

We pretty much blew right threw the first 10 doses.

As with all hospital stays I had really great nurses, which made the okay nurses seem worse than the were. One particular nurse was very cautious and checked on my every time my heart rate went up– a pain when it does it everytime you schooch up in bed, or get on the potty chair. I got tired of her well intention look ins and tried to explain that a HR of 140 wasn’t going to kill me, so just let me poo in private please. Others were stellar, and some just seemed a little slower in responding when I was rigoring away unable to get warm. But I guess that’s to be expected, like everything else.

I don’t feel like we ever did get a good handle on when I would side effect, like that time. But then I didn’t seem to be holding to a schedule either. Nausea sat in rather quickly this time after a dose, and the rigor seemed to come well later.

What did help though, was a constant presence from Mary and my friends at the Annapolis Fire Department. Never was I alone for a dosing of IL-2 and there was always someone there to grab a blanket or “hold my hair” as I puked. What that means can only be put into these words… “I am crying right now as I type this…

I can’t thank Scott, Joe, Stanley, Dave, GY, Debbie, Danny, or Randy enough, nor the department which put some of them on Admin Leave so they could be there.

Eventually though, my body had had enough and with my HR high, my BP low, my red blood cells down, and my kidneys not producing they decision was made by the doctors to stop after dose 12. They tweaked all my medications, and infused two units of blood. My last dose was Sunday morning at 6am.

By Sunday night I was coming off all the medications, monitors, and was well on my way to coming home. It’s amazing what a couple of units of O Positive will do for you! I can see why atheletes blood dope… hopefully they won’t hold against me when I enter the Tour de France next year! (yeah right)

A couple other FD friends stopped by to help me pass the evening duldrums and on Monday morning I was up and ready to get cleaned up and head home. The final words came through and Mary and her Dad came to retrieve me.

So that about wraps up my week. Hope it was entertaining. I was surprised at how much work had be done on our new deck while I was away. There were beams in the ground when I left, and now it’s ready for the decking. My fair weather carpenter must’ve put in some extra rainy days. And if that wasn’t enough, Nathaniel held out on his “new thing” until I got home and could watch as he STOOD for 5 whole seconds! Wow… amazing!!

11:09 tonight we were pulling up to the house and going inside

11:09 AM, I was watching this on the computer:

If you knew John, you knew he embodied LiveStrong.  If you didn’t you can tell from his words that he left behind… in the hospital and in almost constant pain and he never lost his sense of humor and he fought without giving up and he appreciated those who were there for him.

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About Mary K. Smith

I was widowed in July 2009, when I lost my beloved husband, John, to melanoma. Cancer SUCKS. We have a young son who was just a year old when his father died. I live on a small farm in Maryland which is home to horses, cats, and a dog. I started this blog as a way for me to heal, a way to remember my husband, and eventually I'd like to share it with our son so he can see the love that his father had for him, the love that we had for each other, what a great person his father was, and how hard his father fought to live.
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