When fears begin to be realized.

It's been rough. These recent pains are persistent and the pain button isn't helping as much. The one thing I didn't want to happen to her during the dying process was her suffering, and well, she's been suffering lately.

Her sleep has been fitful, to put it mildly. This fitfulness isn't an increase in myoclonic jerks, although those are still present. These are like she's getting lightning bolts of pain, that start in the abdomen and shoot towards her head and feet. She has a furrowed brow many times during sleep, indicating pain. She is no longer denying the pressing of the button, and has even allowed me to press it for her when I see these type of events happening.

Her left leg continues to swell due to edema - it is still not at it's biggest size like when she came home from the hospital, but it's well on it's way. Her abdomen is so hard and swollen it's almost unreal. The tumors are pushing veins against the skin again, and due to the lack of eating the layer of fat cells under the skin is gone, giving it a more pronounced shape. Click on each pic for a larger view, and hover over it for a description.

Seeing the pressure these tumors are placing upon the skin can only mean the same is happening internally. It's hard for me to deal with this. The enemy is clearly visible and I am helpless to do anything about it. Hearing the bowel noises again is scary, as you can tell they are under attack. The noises sound like a monster and are loud enough to be heard 20 feet away. This cancer is fucking RELENTLESS.

The increasing pressure caused by the growing tumors, coupled with the need to use more pain medicine, lead to new problems. The medication really sedates her and the pressure is no doubt pressing on her bladder. When she gets up to go to the bathroom, there are occasions where a bit of urine leaks out as she gets up. Last night about midnight there was more than a bit, and before she made it to the bathroom to finish, diarrhea joined in. It got so bad last night that even after we thought it was over, she stood up and gravity alone was enough to cause another bout. 

She was understandably upset about this, but there's really nothing we can do to prevent it. She feels bad that I have to wake up to do "deal with this" so much so that she tried, in pain, to clean up for 20 minutes before I knew what was going on.

I stripped the bed, got new sheets in place, and started laundry. We thought we were out of those pad things but found a package hiding behind the door. We threw a few towels down just in case, and I assured her that everything was ok and she went back to sleep.

If you are wondering If I am typing about these incidents without her knowledge, be assured I am not. I read her everything up to this paragraph. We really aren't holding anything back. You, the reader, are on this journey with us for as long as you wish to be. We want friends and family to really know what's going on, and we want strangers (or rather, friends we don't know) to know as well.

Again, this blog is first and foremost to update friends and family on her condition. Right behind that this blog is my attempt at keeping my sanity. Right behind that is my hope that it will in some way help someone somewhere going through a similar situation, whether it be in coping, releasing their feelings, or simply what it's like to care for a dying loved one. I certainly went into this with zero experience, and reading a book or two has helped me a lot. It is my goal to do the same.

Speaking of books... if you add what I wrote for the book and all the blog posts together there's over 50,000 words already. Sure, there will be some heavy editing, but to think I've written 50,000 words in two months is really astonishing to me. I never knew I had it in me.

I had another migraine today. I think part of it is stress, and part of it is that I just cannot eat enough. I have no appetite. I force myself to eat every day, and all of it leaves me nauseous. Thankfully, the drug that my doctor prescribed me (Imitrex) has helped me both times with the migraines. It knocks me out, but I wake up and the migraine is gone, so I will take it. I also ended up with an anxiety attack this afternoon simply at the thought of her suffering. My increased klonopin dosage should help with that.  

I had planned on going on a bike ride today but due to not sleeping well and her condition I decided against it. I don't want to leave her alone. Even if someone comes to be with her, I'm not sure if I want to be away from her for long.

Back to Billy Jo. (Sorry - I'm all over the fucking place tonight). She slept most of the day. While the myoclonic jerks continued, this morning's "chatter" was almost non-existent. The only two words I heard her say today were "small pox". Usually her sleep-talking involves happy or everyday things. Small pox is neither of those. I'm glad that dream ended quickly.

She was in bed all day except to let Wrigley out and to talk with our friend Lisa for a few minutes. Lisa was nice enough to go pick up the rest of my Imitrex prescription from Target since I was in no shape to do so.. Food-wise, she ate 1/4 of a chocolate chip cookie. She tried to get on Facebook and was asleep within two minutes. She's sleeping again as I type this. The only positive thing I can hold on to is that she's still able to get herself out of bed, even if it's only for a few minutes.

The nurses came today and we explained what's been happening the past few days. They spoke with the doctor and the following changes have been made:

  • The dilaudid continuous dosage has been increased from 2mg to 3mg per hour.
  • The button-press amount has been increased form 1.5mg to 2.0mg up to six times an hour.
  • Ambien and Xanax will stop tomorrow and be replaced by liquid Ativan. The hope is that it will help her sleep more soundly and not in as much pain. I can say that when she was on it in the hospital it worked - she was sleeping well. So much has progressed since then, but still - it's worth a shot.

As for vitals, BP is lower (95/65 I think) but not dangerously low, pulse continues to climb (112).

Those new meds arrive tomorrow along with another cartridge of dilaudid. It has been made explicitly clear to her that the button should be used when needed, and not to skip it because of fears it will run out. The nurses are going to do the math and even if it looks to run out on Thanksgiving, there's going to be someone here to change it.

I want to dive into more of what I am feeling right now, but it's already almost 9:00 pm and this post is long enough. Maybe I'll start another post now for tomorrow.

Last night while trying to tidy up old posts for this new site, I found something on my hard drive I  thought was gone for good... the news clip where I was interviewed at the end of RAGBRAI. I had originally linked to it on the news station site and it was removed long ago. Apparently I had downloaded it.  I've put it up on Facebook where it will probably be removed for copyright violation at some point. Oh well. It's also blurry as shit, because networks don't want to sacrifice bandwidth for video quality. Still, you can see Billy Jo and I hugging and hear me nervously and tiredly talk.

If you're curious about my week bicycling across Iowa in 2011, here's the page and all of my adventures during it. I said I wouldn't do it again for at least 10 years, but I think I may do it again sooner, in Billy Jo's memory.  We'll see.

...

Finally, Wrigley got another shipment of elk antlers in the mail today. Petco screwed up TJ's order last week so these were freebies. She is now set until 2014 with elk antlers. She deserves it- she's been pulling double caretaker duty for us for several days now. I am so thankful we have her. Even before these end days, she has provided us love and relief during so many hard, bad, and sad times over the past three years that we'd be lost without her.

That's it for today - sorry for the lateness of the post, and the ADHD matter in which it was written.

Good night everyone- good sleep, good dreams. Especially you, Billy Jo.