Oh I Am Sick. New Symptoms. Oh Boy.
I’m writing this at 1 am. I went to bed at 7 pm. Now my back hurts enough to keep me from sleeping yet again. I think this has been going on in some way since January. I can’t recall a full night’s uninterrupted sleep since then. I had been thinking it was only due to overworking my muscles, but I’ve been taking it easy for over a week now and I’m still being woken up every 2-4 hours with pain that takes an hour to damp down so I can sleep again. I even started taking naps again. No energy to do much else.
I’m experiencing more than just that too. I’ve been bloated and lost my appetite. I’ve struggled to eat enough to maintain my weight at 175 lbs. I haven’t been this weight since early college days. I seem to be getting enough nutrition. No signs of vitamin or other deficiencies, other than a lack of calories & protein. It’s hard to even know if what I feel is nausea or hunger pangs.
As recently as last week I could go through most of the day without too much pain, but now it stays with me after I get up. I’ve just stopped lifting and doing even moderate physical activities. I can hardly muster the energy to walk the dogs a mile.
This seems to correlate with my getting a PET scan tomorrow (Thursday, not this Wednesday early early morning). I’m pretty certain it will turn up something. I fear it because this is the first time that I will have started feeling the cancer instead of just the treatments. All this night time back pain is not due to chemo, radiation, or surgery. This seems to be a first for me, feeling the cancer.
It’s hard to be the person I want to be. Hurting like this really drags a person into an isolated bubble of self. I can’t stop thinking about how I feel, where it’s hurting now, how I can reposition myself. I try and pursue something needing intelligence and the pain cuts in after I get started. Then I just don’t want t do anything at all, or maybe just passively watch some documentary or stupid Marvel comic movie.
I’m getting more and more motivated to see a lawyer about finishing all the endgame details, including a real set of medical directives including terms for withdrawal of support and transferring control over to Melissa. The idea of being turned into a medical zombie because someone in my family won’t let go is horrifying to me. Now I want to ensure it will not happen, that I will be able to step out if unending suffering and loss of agency becomes my fate.
Well anyway, it’s not good. I hope we can figure this out and deal with it because this would be a hell of a fucked up way to end my life.
April 7, 2021 @ 8:21 am
Oh, Geoff, my heart goes out to you. After your last check up of course I latched onto the good news about the tumor on your liver. Completely skimmed over the high cancer number. Your weight loss has been a nagging worry. I am so sorry that you are now experiencing pain. I hope there is a way that they can control it without snowing you. Pain has a way of taking over your thoughts and makes any kind of focus and concentration almost impossible. I hear your pain.
I’m glad to hear that you are going to document your wishes. People’s best intentions get warped when faced with decisions about death. I know this from family experience as well as years of medical social work. Not sure who you are worried about in your immediate family, but I can reassure you if any input from us, your East coast family, is needed, we will support whatever you want.
I am anxious, as is everyone who loves you, to know what the PET scan shows. Hopefully it will give you and your healthcare team some guidance.
Oh, Geoff, hugs and hugs and hugs (gently)
Love,
Robin
April 7, 2021 @ 12:00 pm
Yep, I do NOT want to end up like Dad2 (Norm), and I do not want to lie around like some slab of expensive meat in constant pain. Melissa knows exactly what I want and we will be making sure that she has the final say if it is needed. We’ll know more by tomorrow afternoon. Hopefully it is something completely different than what we fear and curable too!
April 8, 2021 @ 10:21 am
That sounds really really awful, my friend. A double whammy of inner and outer terror.
Please know that there is a lengthy list of people who love you and would do anything WE could to make matters more positive, steering you to a better quality of life. As such, rest assured my phone is open, 24/7, especially if the fear rises. No kidding.
Layton
April 9, 2021 @ 12:52 pm
That means a lot to me. Please be sure to pass that along to everyone else too. I want to visit Texas as soon as things return enough to normal for us to hang out when I’m there. It’s been too long! I’m adding a new post before this evening to talk about the PET scan results. Stay tuned!
April 8, 2021 @ 11:15 am
Hi Geoff,
I was so sorry to get a note from a friend regarding your condition. It is impressive (and, I suppose, expected) that you are documenting the situation as you are. I wish there was something I could do to help, but I fear there is not.
So let me tell you a story. This is my favorite joke, and you may have heard it before, so you can skip it if you want:
A traveling salesman walks up to a famer’s house and knocks on the door. The farmer’s wife answers, and the salesman asks, “Good morning. Where is Farmer Jim?”
The wife replies, “He’s out back, feeding the pig. Just go on back there”
So the salesman walks to the back of the farmhouse, and sees the famer up on a ladder, with a pig in his arms, and the pig is happily eating an apple.
That apple done, the farmer steps down the ladder, moves it over a little bit, carries the pig up the ladder, and the pig starts chomping away again.
The salesman asks, “Farmer Jim, what are you doing?”
The farmer replies, somewhat condescendingly, “What does it look like I’m doing? I’m feeding my pig!”
The salesman then asks, “Well, isn’t that an awfully time consuming way to feed a pig?”
The farmer looks at the pig, he looks at the salesman, and he looks at the ladder.
He then glances down at the salesman and says, “Yes, I suppose it is. But what’s time to a pig?”
April 9, 2021 @ 1:04 pm
Ah the difference between empathy and sympathy! The farmer being an excellent representative of too much sympathy.
Hey, we’ve got it dialed in pretty well over here so please don’t feel bad about “not helping”. Actually hearing from you fills the bill quite nicely! FYI I’m writing a post this afternoon with the results of the scan.
Yeah, the blog is really really helpful. At the beginning I was almost immediately swamped with correspondence from family & friends, even when copy/pasting all over. I had the blog going for years before just for the hell of it, so I just pooled most of the info right there and point folks to it.
So when are you going to Burning Man?