Hi ladies and gents,
Can't overexpress my gratitude at your taking time out of the busy day to write to me. Will PM each of you once I'm done with this post.
Whether this is the end or not, I can't help but be reminded of what we've seen here on the forums -- that the end is fast. So much has happened since last Thursday/Friday, but a lot of it is probably because I've been at the hospital for 2-6 hours every day since getting back from NH last Sunday and seeing so much makes it feel like a lot of detail. She hasn't been nearly as oxygen-dependent as last week. Since Friday evening, she's been on a continuous morphine pump at 1mg/hr. Got a little peeved on Saturday when the nurse unhooked her to let her go to the bathroom and then didn't rehook her until it was me who noticed that the infusion counter was still ticking with no one attached to the end. Meh. Her pain has gone from a 6 to an 8 in her back. Being who she is, an 8 on her scale is a 12 on normal people's scales. Sunday morning was rough -- lots of pain and nausea. Today (Monday) she was pretty responsive but I painfully admit I'm concerned I won't see her in the same way I saw her last Wednesday/Thursday when she was so energetic that her hospital roommate's daughter remarked, "but you're so peppy!" when she heard that this is recurrent colon cancer. Kind of wanted to be snarky about how her 70-year old mother with stage 4 lung cancer had no issue in raising hell for the nurses. That was the same day she, in her usual manner, asserted at my dad that "[she's] coming home," which definitely calmed him down.
He told me last Sunday that he wasn't sure if she WAS coming home and I confidently maintained neutrality and said that "I know it's definitely hard not to think that right now." This forum here -- its wisdom and community -- is what allowed me to say such a thing so genuinely. It let me acknowledge what his fears were without dismissing/minimizing them while also not feeding into it. At this point in the game, everyone is everyone's support. At the same time, while everyone's having their completely understandable knee-jerk reactions, I'm going hour-by-hour when day-by-day isn't possible. To be honest, I'm actually a little afraid for myself -- no one knows except us, you at the forum, one former (AWESOME) co-worker of mine and my new therapist (circa one week ago). I'm so afraid that if I tell anyone I see in common daily interactions, the reflection I'll see of myself in this new reality will trigger some bad stuff. I've already miraculously killed tear-ridden anxiety attacks almost as fast as they've sprouted when I'm at the hospital and I know that I just won't/can't do it anywhere else. A lot of my visits there are spent just keeping company. Not a whole lot of talking is done. Mom said that's fine.
This forum here is also what kept me straight last week when my dad said "oh, you know that it's in her brain, right?" followed two days later by "oh, you know that they're stopping treatment, right?" Tomorrow's therapy session will be all about "when is MY sensitivity going to be considered?" I mean, seems I'm lucky for my own sake that I knew all along that, at least chemically (as opposed to surgically), you're getting close to the end of standard treatment when you hear things like Erbitux and Vectibix (someone please correct me if this is wrong -- last thing I want is to spread misinformation). Hopefully by this time next year, Regorafenib is on that list too. I called a nearby study site and whether they answer my email or not, I'm not certain it will be on ours. I've always wondered what it would be like to be in this position -- I've seen so many others make this stop on their journey -- and I have to say, things are moving so fast that I'm not sure I've caught up with myself. Only a few hours ago did I finally piece together, after some focused thought of what is in front of us, that this trial is unlikely to happen for us with someone at an 8/10 on the pain scale on a continuous Ativan/morphine infusion.
Anyway, before this ramble becomes more rambling, let me end by saying that the inpatient hospice is only 10-15 minutes away from where I am (40 from my sister) so I'm hoping to be a 'field' camp if needed. Mom may be moving there later today is what my sister is saying. Now, about those PMs...
51 @ dx (I'm her son - call me Steve)
8/12: referred for hospice
7/12: significant progression
11/10: recurrence; XELIRI+Avastin 'forever'
7/10: NED; lingering CIPN
12/09 - removed 19cm sigmoid colon/prox rectum; 5/13 nodes