Old title: Frustration setting in. New title: I don't know.
Day 10. Day.Fucking.Ten.
No change. She had about an hour last night with pain down to a 5 on the 0-10 level. Lowest since Tuesday morning, when she was up, moving around, doing laps, cleaning up the room to save work for the housekeeping team, etc. - you know - the stuff we know and love her for. But then the pain returned almost as quickly as it dissipated. She alternates between being awake in pain or nodding off from meds and sleeping. There is no sign of her pooping soon. Her appetite has decreased greatly, and I can't say I blame her. I'm sad, mad, frustrated, at my lack of control of any of this. The doctors assure us the constipation will clear and she'll feel a LOT better, but as each hour passes I wonder if that will ever happen.
Talking with the on-call RN from Palliative today, they are going to up the pain dosage. They are sure that the opiates are not causing it because the other drug they gave to counteract opiate-related constipation (quite literally) hasn't done shit. She's in too much pain to get up and move around, which could help, but we don't know. She's back to needing help to walk to the bathroom. I also just remembered while talking to the RN that she hasn't taken her Lexapro in 10 days now. They are going to get her going on that again...
As bad as I was last week, as much as I moved forward this week, I feel myself slipping backwards again. Not full-blown panic attack bad, but just increased helplessness, sadness, and frustration. Every day that passes with her still in here, in pain and too weak and tired to leave, is another day she isn't taking Avastin, and another day the tumors are growing.
And now to open up completely the shit that bangs around my skull the past 18 hours...(Remember - no more holding it in)
It's hard to explain, but in some ways I feel like I am getting a preview of what the end will be. I have no experience with hospice, so I asked the nurse last night if this is the type of thing that happens... sleep, fitful mostly, pain while awake, no appetite, decreasing mood, etc. I asked the RN for Palliative Care the same thing. The answer was "it's similar". At least I am getting an idea of what the end will be like, which I suppose can only help me in my strength.
Before I ever got the chance to post this, there was an interruption. I'll just add it here.
Time stopped. I don't know how long ago I wrote this. It was sometime this afternoon. So much has happened since then it feels like a dream... It's almost 9pm now. Lunch, dinner missed in the rearview mirror.
The oncologist came in today and discussed with me what she is pretty sure is going on since it's been ten days and nothing is working... She said she hopes she's wrong, and could be, but the number of other explanations are very few. It is called diffuse carcinomatosis. Definition: A condition resulting from widespread dissemination of carcinoma in multiple sites in various organs or tissues of the body; sometimes also used in relation to involvement of a relatively large region of the body. Basically, small tumors (too small to show up on a CT-Scan) in the bowels, are likely the cause for the failure to poop. Think of plaque build-up in arteries. At this point it appears there's a blockage of that kind, and the poop simply cannot get through. When numerous enemas, suppositories, and so many medications meant to get you going don't work, including the magical one for narcotic-based constipation, the reasons dwindle down to the one you do not want to hear. The oncologist will be in touch with her Palliative Care doctor, but it seems right now that if she can't go despite all the attempts to get her to go, then we may have to go to the next step...getting her home and comfortable. Hospice.
I can't believe I just typed that.
I feel like today is a bad dream I never woke up from. The oncologist spent about 15-20 minutes with me when she saw me on the other side of the hospital. She said again that it is not definitively this, but it is likely.
Basically, we need a fucking miracle between now and Tuesday/Wednesday.
I am not sure how to share what I'm feeling right now. I'm oddly calm. Much calmer than four Xanax at a time Friday(FXF) last week. I suppose it's shock. I can't believe I have garnered enough strength in the 8 days since FXF to be this strong, so it must be shock.
The speed of how bad things have turned is mind-numbing. To go from what I thought was worst case scenario last week, to out of the woods, to frustration and anxiousness, to what is looking to be truly a worst case scenario. All in 10 days.
I explained all this to Billy Jo, as she was in and out of sleep during the oncologist's visit. We had some tears of sadness, a few of remembrances of joyous occasions. I took the opportunity again to tell her that, back when the cancer first hit and we were only dating a year, and she told me to bolt, and I didn't, and back after we married and the cancer came back in 1999 with a vengeance, and she told me to bolt, and she'd really understand, and I didn't... I told her that even if the end is here, I wouldn't have changed my mind, even knowing how difficult the last 17 years have been. I just cannot imagine my life without her all these years, and as painful as this turn of events has become, they can never and will never overshadow the good times we have had. I got to spend almost half of my life with the most caring, courageous, brave, wonderful woman I know and for that I am forever grateful.
It is 11:00pm Saturday night and in less than 30 minutes from having to do something I don't want to do. Tell Taylor. This will be the hardest thing to do up to this point. I am not sure how I am going to get through it.
As she walks through the door I will be hitting "publish" on this, and not a second sooner. I can't risk her finding out this way. I have to be there.
I'll probably be up all night so another post may be forthcoming.