September 23rd, 2013
It happens sometimes that I am overwhelmed enough by what is going on that I have a hard time finding the words. I have things to report, issues to discuss, but can’t find the focus to put it down in writing. So time passes and things keep happening and more ideas pile up and the post that needs to be written gets bigger and bigger and more and more intimidating to tackle, so it doesn’t happen. I’m finding myself in one of those cycles now. The bike show, and its aftermath were a pretty emotionally draining time. I’ve sat down a few times now to try to write about it and have come up short. IN short, by the time labor day weekend rolled up I was running on fumes.. I had reached the end of my rope, tied a knot, and was hanging on for dear life. I had changed pain medication the weekend before and was having trouble adjusting.. The wonderful, productive (and to others, I think totally annoying) mania that I experienced for much of the summer had dried up. Whether I was aware of it or not, I think my baseline level of pain had crept up another notch or two. To get the show to happen became that tight wire act that I have described before, where simply staying up takes TOTAL focus, and anyone who distracted me from that goal suffered the tyrannical wrath of self involved single minded focus. In other words.. increasingly, as the show approached, I think I was becoming pretty impossible to take. And by the time the show was all wrapped up, those the closest to me weren’t really feeling all that close. I was delighted to have raised $15K for hospice, but wasn’t really feeling like I had anyone to celebrate with. I was also feeling a little too confused and embarrassed about what had happened to be able to write about it. I am STILL feeling too confused to be able to write about it with any authority. But I CAN say that for one of the few times in our relationship, Hill and I were not on the same team. I was feeling a certain level of postpartum depression around the show. And I arrived at that particular horizon and stepped into the void beyond it to find myself pretty alone.
At any rate, I wasn’t in a position where I felt much like writing. I’m still not really feeling as though I can adequately discuss that particular stretch of time. But I felt as though I needed, at least, to touch on it before leaping into the more recent updates.
Over the couple of weeks following the bike show I tried to find ways to be productive.. working on that bloody run of pill flasks.. I’m having trouble thinking what else to be honest. It wasn’t a great couple of weeks really. Not much bike riding. Not much making stuff. Not much feeling close to my little family. Not much luck being less irritable. But a week ago friday a possible culprit revealed itself.
I had been needing a little more break through medication gradually as that week wore on. On thursday night I knew that I wouldn’t be able to sleep without taking some extra. Still I woke up at about 3:30 with pretty sever pain deep in the right buttock (one of several chronic pains that crops up). I took some more break through medication and sort of went back to sleep.. woke up again at 4:30 in absolute agony. Trying to reconstruct what happened from then until the following evening is going to be almost impossible for me, but I can sum it up. The pain was at the same level or beyond that which landed me in the hospital 4 months ago, and no amount of breakthrough methadone was touching it. I was suddenly experiencing an entirely new realm of discomfort. Hill was on the phone for me talking with Hospice people who reassured us that we should not be shy about taking the meds, but it wasn’t working. At some point VERY early in the morinng we got a call from my hospice Doc, Dana, who took an inventory of what meds we still had around and switched me to dilaudid at a dose that finally soothed the situation a bit but the pain was very persistent. Ultimately to get things under control involved knocking me more or less unconscious for the day. Dana came to examine me in the late morning. Just her presence was soothing. She’s a bit of a miracle. I was so drugged at this point that I repeatedly dozed off as she checked me out.. I vaguely recall Hill and Dana laughing at me as I pretended to be following what was going on.
I’m not telling the story very well, but the point is that just like 4 months ago my baseline level of pain had somehow risen to a level that I was simply unable to cope with at the current dose of baseline pain medication. It had knocked me off my tight rope again and was demanding a different level of attention. So we boosted my baseline by a sort of staggering 50% AND switched me back to dilaudid.. more frequently.. as breakthrough pain management. I spent friday in a completely drugged haze. I tried, I think on Saturday, to report this news, and again on Sunday, but simply couldn’t make it through a sentence without dozing off (I am still, a week later, adjusting to the new level of narcotics). BUT the pain seemed to be back under control. I played some pool with JS on Sunday, and was a little dozy, but at least was able to play.. felt like I was out of the woods.
I’m having trouble remembering the chronology of it all.. but somewhere in there I had to irrigate, and it did NOT go very well. It took a LONG time, was painful, and was not very productive.
By Monday evening I was feeling some intestinal discomfort. Gas pain, I guessed. I had already planned to make a particularly refreshing stir fry for dinner, something with a lot of fresh ginger, to settle the stomach, but by the time I put it on the table, my own guts were hurting enough that I opted not to eat. I went off to bed with no dinner, and before long was lying there with intestinal cramping pain that rivaled the pain I’d just spent several days trying to get under control. At 3:00 that morning I found myself in the bathroom trying to irrigate thinking that might relieve some of the pressure that I was experiencing, which honestly felt powerful enough to rupture my intestines. I knew, of course that I was taking a bit of a gamble. That pumping a liter of fluid IN to guts that already felt as thought they were about to burst, was potentially a terrible idea.. But my wee hour logic, won out. I knew that over the last bunch of days I’d taken WAY more narcotics than my body was used to, that this had undoubtedly left me pretty constipated, and I talked myself into believing that the pressure I was feeling was the pressure of some very full bowels that simply needed release! That irrigation could do it! That it would be pretty uncomfortable to do, but that the payoff would be enormous. Well. I was right about it being uncomfortable to do.. If I had to guess I’d say that about three quarters of the liter of water I put in there stayed and simply added to the discomfort. After an hour of writhing around on the toilet waiting for something to happen, I gave up. On my way back to bed I took a swig of Milk of Magnesia, just for good measure, and instantly started to projectile vomit brown water that looked and smelled like what should have been coming out of my stoma. Hill was awake at this point.
“Baby? Are you ok?”
I was not at all ok. It had been a really difficult 4 or 5 days after a really difficult 3 or 4 weeks, and I was kneeling on the floor in the bathroom in a puddle of shit water that had just come launching from my mouth, without offering me any relief. I was exhausted, getting ready to climb into bed with an irrigation sleeve still attached, just in case. I felt no real confidence that I’d be able to sleep, and no real confidence that I’d even make it through the rest of the night without my bowels rupturing and killing me in one of the more disgusting ways this disease could..
I did fall asleep eventually. I slept off and on until around 4 the next afternoon, in fact. People came and went, mostly just sitting quietly and reading while I slept. Hill, Special Ed, my mom.
Judging from your comments on my last (non) post, it seems that about half of you believe that I’ve simply been off having too much fun to bother checking in on the blog to keep you all up to speed. I wish that was the case! Instead it’s been one of those times that what I have to say is either difficult to talk about, or difficult to report (if you see the distinction). But there it is. The last three weeks or so. Not very well told, but at least you get the picture. The whole thing has left me feeling pretty diminished.
Then again. When I came out of the hospital 4 months ago having been told “weeks to months” (still ringing in my ears), I felt pretty diminished as well! AND, once I adjusted to that new reality.. the new baseline levels of both pain and pain relief.. I went on a real rampage of creative productivity. Maybe it’s a cycle. Maybe I was just due for a little reality check (“kid.. you ARE still dying..”) And now that reality has been checked I can go back to some sort of inspired creative mania! But, maybe this time with a little more wisdom about the impact that sort of mania has on those around me?
This is a lousy post.. but had to be stumbled through. More Soon.