Talking it out, and a much needed bike ride
After my 3am mini-meltdown, Billy Jo woke up about 8:30am and we discussed how I was feeling lately. And that feeling was confused and afraid. I began to wonder if this string of good days, of the increased bowel movements, of the disappearance of the swelling in her leg, if all of this meant that maybe the doctors had jumped the gun on placing her in hospice. Was the megamillions ticket (Tamoxifen) at four of four numbers, with just two to go for the jackpot?? How on earth would we find out on hospice if she was actually getting better? Can't get blood tests, can't get scans, none of that, while in hospice. Do we get out of hospice to get this stuff done? If we leave hospice will insurance allow her back on later? Just what was going on? Furthermore, do I allow myself to break down the strength wall, which I just spent a lot of energy and emotion building to deal with her dying, and allow unrestrained hope to flood back in? What would that do to my strength if things suddenly turn for the worse again? I was so thankful it was Erin's (the social worker) day to visit. Add to the feelings above, I was feeling selfish and guilty for having nothing other than happy thoughts during good days. It should be the only thing I care about - that Billy Jo is having good days, yet here I am, selfishly worrying about my "strength". What was overall a good week for her was a not so good one for my emotions. How fucked up is that? I was ashamed. Erin talked me off the ledge and told me she could understand my fears. So could Billy Jo. You see, the only way I think I can be strong enough to deal with her death is to accept it. To expect it. To not allow too much hope to break down that wall of strength. But I have to have hope as well. So what do I do? I have to take the good times at face value, not read too much into it, and hope for many more. Not hope for a miracle cure. Not hope for a miracle remission. If they happen I will be overjoyed, but the odds are stacked against that greatly.
I even called her gyno oncologist's office to talk to the head nurse... to tell her what's going on. She put me back into reality. She told me there's no way Billy Jo should be coming out of hospice right now - she's not having regular bowel movements, she's not eating much at all, she's still vomiting, she's very tired, etc. etc. etc. There is no way two weeks of Tamoxifen would have caused these good days or the reduced swelling in her leg - it takes much longer to determine if it's going to work. She told me to enjoy these good days. She also told me that the doctors think she may live quite a while in hospice. Of course, no one will tell us what that means, but no one ever has. She's a special case. She said that if she gets to the point where she's eating regularly, having regular bowel movements, awake 14-15 hours a day, no vomiting, etc. for a period of time... only THEN do we talk about maybe coming out of hospice to see what a PET scan or inhibin blood test says.
See there I go, getting ahead of myself. Shit Dave - get a hold of yourself. Enjoy the good days. Enjoy the good days. Don't read into them.
Erin left, Billy Jo took another pain pill (she has most of the day - the puking yesterday really caused pain today) and was going to take a nap. No poop, but the little dinner she ate stayed down, unlike yesterday.
Since she was going to nap, I decided to take some natural xanax - a 20 mile bike ride on the I&M Canal Trail in Channahon.
Nice cool fall day. 20 miles, only saw one other cyclist... right as I was hauling ass to catch up to an 8 or 10 point buck running right down the trail. I hoped the GoPro captured it, but it turns out deer are camouflaged in their natural habitat. Who woulda thunk it? Anyway, here's the video. I tried to point it out. It was running right down the trail and saw the only other cyclist for miles coming right for him, so he took a hard left and ran across the shallow canal. If it wasn't for that guy I would have caught up to that bastard :D.
(It might be a little easier to see on youtube and changing the quality to 480p. But I wouldn't count on it.)