Aug 29, 2013 - 4:44 pm
It's been crazy how this round of chemo knocked the stuffing right out of me. I knew it would be rough but had no idea I would be so incapacitated and sufferingf from so many ailments I lost count. I thought getting started after all of this time that things would be not as difficult...especially later on in the cycle.
I've had unbelievable night sweats and day sweats....followed by the chills and occasional shakes. I'm under a blanket most of the time in the hot Texas sun.
Right now, it feels like I'm physically dying...no joke....that's how it feels.
There's been zero quality in 14-days....
I've lost 15 lbs in 14 days on this cycle...not a good sign....even the PA freaked about that. I had actually lost 10 more the prior six weeks to starting treatment, so I'm shrinking for sure. I've still got alot of reserve....I figure close to 30 more lbs I could lose....provided me break it down by at least 3 months or more.
My appetite has been long gone....can't eat much anymore for the past two months much.....this cycle has now gotten me down to not very much....a small bite or two here....and I drink as much water as I can stand....that is my only lifeline at at this point.
It does not bode well for the future and that's what the PA picked up on....the noticeable weight loss in two weeks time since starting treatment.
Kim and I hare having deeper talks than ever...she is allowing me to express my concerns and talk about end of life things etc. She is listening to me though scared for me to consider no more treatment.
This drug is rough for quite a few of us....it's apparently my krptonite now. I know there are many things still to do. I know all about the reductions, infusion lengths etc. I've been telling many of you that stuff for many years:)
My onc better wise up or I'm on notice with the PA that we will be leaving to find someone with a human touch. I don't want my feelings mitigated or my reports dismissed, clincial or not. If I'm telling you about it, then you know damn well that what's happened from my view anyway.
I've had all the standard ride with this drug. I began intestinal bleeding the past 3 days....I figured it to be the Zaltrap...but the PA said it sounded like my intestinal lining was sloughing up after breaking down from the chemo. I had forgotten that.....that's what I think it is. But, it's like the dry heaves, you groan and strain and scream for a dropper full of intestinal lining....you pay trhe same pain as if you were crapping out a dump truck worth.
The cramps and the gas and the pain are unbearable at times.....
I feel bad today (14) still but am up at least and wanted to talk to you a minute while I could....who knows what the next cycle will do to me. I don't know the adjusted doses yet...we meet before chemo tomorrow for the plan. And there are on notice for beginning to think outside the box and customizing some kind of treatment that I can live with for now.
I can't live like this....and won't.....
They can control the pain with Dilaudid and Fentanyl....so if I got off chemo, I'm sure I'd feel better soon and could then live out my days with some kind of decency and humanity.
It's not life here at all.....can't even get off the house with all of the associated mess....hard even for appts.
I don't know where we're going yet.....I still can't write like I want to. Just too sick to put a nice post together.....but I know some are worried so I just wanted you to know what was going on.
I finished up with Coping/Jessica and sent in the final approval and signed off.....
It is changed somewhat but not too dramatically. It lacks my flair, LOL! But it brings Big Billy to life.....the story is titled "The Legend of Big Billy"
Now, wouldn't you know that SOB would become a legend long before me:) LOL!
Here's a story...haven't told you one in awhile....
The first night we got home from infusion...I felt so bad, I told Kim to drive me back down and I was going to have the pump removed....it was a premonitiion of things to come. As always....another true story.
I'll try to hang in there. I thought I had nothing left to teach anyone here.....but this leg of the journey has many thoughts I'd love to express...if I could just get feeling better to do so. I still might be able to peel the paint off these walls if the drugs would let up.
I swear they are worse than the disease itself.......2 weeks ago, I felt okay enough.....2 weeks later, I feel dead to the world.
Chemo sucks....and the first lesson I have for this next chapter is how being strong and able to do the things we've done before, may not come as easily the next time....and you just never know.
My new epiphany is how now (at this late stage of the game) how the KNOWING can seemingly work more against you - than for you.
And that's because you just know too much....and what it takes.....and the scars from before....which make you hesitant about the future.
Naievete is the land I wish I could reach back to about now.....there is something in its innocence that allows us to do the things then - that we cannot find the will or the energy to do anymore.
With all my love,