Tuesday, March 16, 2010

Fatigue and Frustrations

I had a bit of a monologue on IRC earlier today:
  • I've been less than positive about my health lately...
  • In January, I was thinking I had weeks left.
  • These days, weeks seems kinda lofty.
  • I don't know how much longer I'll be strong enough to participate in even the simplest online communication.
  • If I was crossing below 50% strength in November, I feel like I'm down to 10% now --
  • Which gives me a much better idea of what 90-100% of "normal" really was -- and it would be difficult for someone feeling "normal" to know what I mean.
  • Imagine your worst case of the flu: I'd say that weighs in at 60%.
  • I think about getting a wheelchair because walking down a 100' hallway (at work or a grocery store) seems like running a marathon.
  • Hell, going downstairs for a smoke requires returning back upstairs. :(
  • I don't know how much longer I have the strength to do stuff.
  • I had to ask Angie to take Heather to school from now on because I get so tired with even that minimal work.
  • Or at least the one time I parked in the handicapped zone at the school and tried to pick Heather up from school -- I had to sit down after walking across the short distance to the Kindergarten door.
  • And I needed to stop at the front of the school to rest before crossing the street.
  • Lemme make a map...

  • View Larger Map
  • The handicapped parking is "below" the "D-shaped" indent coming from Crooked Lake Blvd onto Morris Bye's property.
  • Closest to the school is the bus lane.
  • The Kindergarten entrance is on the south end of the school, near where the one-way bus lane and parking entrance are found. "B"
Questions, Questions, Questions

I have been frustrated quite a bit lately when discussing things with nurses and such. I feel tired; I wish I didn't. I try to fight for some energy, but it wears me out. But when it comes to answering questions about how I'm feeling -- it almost drives me nuts. It's like I'm not picking the answer that they want me to pick.

I think it all got started heading the wrong direction after I got the tube installed. I had been taking a liter off every day starting Sunday following its installation on the previous Friday (where 4 liters were drained). Initially taking the excess fluid off provided relief. But after a week or so, I was feeling pretty tired and weak. I had a visit with Dr. Amatruda on the Tuesday that followed.

Mainly, they wanted to steer me towards hospice care; I did have the initial visit by a hospice representative but that went like crap. I had opted for the 2nd round of chemo so that I could see the results in a subsequent scan. Because I had done so, I kept getting non-answers from the representative.
  • What do they do if I'm on hospice?
    We'll have to do an examination to answer that.

  • Will I still be draining and whatever?
    We'll have to do an examination to answer that.

  • So it's mostly just filling me full of painkillers?
    We'll have to do an examination to answer that.
I'm being hyperbolic there, but it seemed like 30 minutes of hearing, "We'll have to do an examination to answer that." I ask questions, I get no answers.

Well at some point I got to talking to Michelle about not feeling very energetic. The answer I was hearing, whether or not that's what was meant, was: "Do nothing and live with it, or check into the hospital and expect to be there for a few days."

I was looking for a little more gray area with options. Instead, I've done my best to tough it out. Last week I started skipping the draining for a day -- so I skipped Thursday and Saturday and today (Tuesday, March 16). I haven't felt too bloated, and if it's better for me to leave the fluid for its nutrient value, I've chosen to try that. Besides, that was supposed to be one of the side effect/benefits of the chemo.

I have now finished the 2nd round of chemo. There was no scan scheduled. Why the hell not? I haven't a clue. It's kinda the point to have a scan to see if the last two rounds of chemo have done anything for me -- it's the only way to find out. Michelle said once over the phone that since things didn't look good and they mentioned "hospice" that I'd be off on that route (and apparently have no interest in my current health!?).

But what has been tremendously annoying with this is that during this past two months I've been asked, "What's the pain like?" For me, it's not the pain. There are many pains: some are sharp, some dull; some are persistent for a time, others are intermittent; some are really painful, some are mere annoyances. Some is related to nausea, some to the chemo I was taking, so is due to lying in bed a lot. Some is from the fluid. I have a wide array of pains from my left heal to my shoulders. I have fatigue in my legs. I have shortness of breath -- which combine to hurt when I walk up and down the stairs.

I try to explain this, and I get the "you seem bitchy" response. No shit? How the hell else do I answer the question without answering the question?

So I go from one extreme to another: getting non-answers to my questions, and seeming to get non-answers to my replies to questions. What am I supposed to do? I feel like I'm in China or somewhere where I don't speak the language.

Let Me Try To Finish on a Positive Note

It's hard to remain positive with all of this going on. I did finally get Fr. Bill to the house, and that did a great deal to boost my spirits. I had a pretty good confession -- I finally got a handful of things off my chest (although I had already "confessed" to Angie these same things several times).

I received "last rites" again as well (the Church may change the name, but I still think of it as Extreme Unction). I haven't heard any spirit talk to me like I did the first time, but I wasn't expecting such a thing -- hoping, not expecting. Much like I hope for a miracle, but I refuse to expect one.

Prayer does help me, but I don't expect prayer to equal a miracle. If the Lord so chooses, I would answer the calling. Living or dying: both are going to be hard work.

My posts this year have been more of a free-form rambling than I'd tried to do previously. I blame the fatigue and frustration.


Norm said...

Dave, I read this and cried. I haven't been able to get down to the Cities lately because of hellish work and child activity schedules, and it looks as though I may not get a chance to come down there to see you again. If that is the case, I'm very thankful for the bit of time we had together on Christmas Eve. You and your girls are in my prayers every day, Bro. After 35 years of knowing you and calling you a friend, I simply refuse to say "goodbye." A better phrase would be "See you on the other side." (That's assuming we end up in the same place. I know your elevator is punched for "UP" but I'm not so sure about my own.) :)

Love ya, Bro. Be strong and know that there are a lot of us that will be here for you and your girls.

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