Just Call Me the One-Handed Wonder
Tisk, tisk. With my memory I should be blogging more regularly. But, ya do what you can do, yo.
Is it actually March first? I don't like how time flies. Especially when I'm somewhat sidelined and unable to do as much as I'd like to do with my time. I hate saying it, but the last 2 months haven't consisted of much more than dragging myself out of bed between 10am-1pm, then plopping myself on the couch for the rest of the day to watch TV, read, make phone calls (usually related to medical or supportive care, meaning social work or group, that kinda thing). Up until the last 2 or 3 weeks, I was able to drive so I could take myself to this or that appointment but I've lost that independence now. For real excitement, I'd have over only a couple visitors a week (too much socializing drains me), watch DVD's on weekend nights with friends. All because of PAIN!
I don't know where exactly I got the idea that most cancer pain was manageable. Like so many other impressions I had about cancer until I was thrown into this life, I just recently realized that my impression, while not untrue, was a bit simplistic, or a bit black and white. My cancer pain can be managed, but not with a decent quality of life while I still feel like I can and should have a relatively normal lifestyle... going out for dinners, shopping for fun OR necessity (I wish I could go grocery shopping!) , having some drinky poos with friends. I feel mentally and physically ready for this, minus the pain.
Here's the stab at the heart: In order for my pain to be completely under control, I'd be a zombie!
I kept returning to the cancer centre saying, "This isn't working". So they'd up the doses as far as they could without nasty side effects occurring. It wasn't until a couple weeks ago that I go the nerve to ask what their goal was for me pain wise. In my head, I totally thought we were working to get me to the point I described above. But just in case, I didn't ask. Their answer broke my heart (how many times can a heart get broken?). They said they wanted to get me into a "comfortable resting state", which I took to mean comfy on the couch. And the truth was, I was pretty much comfortable on the couch in certain strategic positions. But I wasn't ready for that. That's not my life, not now. Beleive it or not, I still think of myself as a healthy person! Call me sick, and I think, "But I don't have a cold."
So, along came the CADD pump this week which is a rectangular box, about 9x2 inches and weighs like 2lbs. Part of the contraption holds my medication (Dilaudid) which flows through a tiny plastic tube, through a small needle, and into my subq tissue, luckily not a vein cuz that would hurt more since the needle and meds are replaced weekly. The initial dosing did nada but SHABAMMM! the second dose helps a lot!
I'm not nearly pain free, but I can handle it better and I'm grateful for the amount of "life" I've been given back. It's hard to explain but for 2 months everyday I wondered how many more days I could take. So, the day by day mentally is what got me by as well as trying to focus on what I did have and could do rather than what I didn't or couldn't. Must admit that it crossed my mind a few times how many bottles of different narcotics were sitting at my bedside. Had it been another person, a person without so much support, a person who knows not how and when to seek professional help, a person in a deep depression, those pills could easily have done a person in, not the cancer. I guess no one tracks this stuff? .....................................................
What the hell, I typed left hand only for 3 hrs. about this that and the other thing. I erased it!!!!! I can't repeat it, I don't want to. Well, now you know I can't use my right hand at all anymore, not only with the bionic arm! That's frustrating for sooooo many reasons, one being that blogging is a bitch now. But, much better than handwriting so I won't wallow in that long.
The only thing I have to say is that where my entry left off, it seemed like I was pain free. Nope, not at all. The way I went on to decribe it was like this: Instead of having 1 position be comfy on the couch, there are now several. I can do a few errands in a row if someone drives and holds doors and bags, but that gets me into a high level of pain which subsides after a while when I rest. So it's all about balacing need or desire with how much pain I'm willing to take. But if I pushed it past a few errands I'd likely end up in emerge again. So, my enthusiasm is all relative, but to me, right now, it makes a huuuuge difference in my quality of life.
Too bad so much got erased because I can only squeeze in one more entry before I start IL-2 in Buffalo on Monday. But we're leaving Sunday since I have to be at the hospital at the crack of dawn. I want to write about my feelings going into this treatment, many of which I've switched off for a while just so I can keep it together and get the most out of my days in waiting.
Blogging one handed is going to be a challenge going forward. Everything's a challenge these days. But I can handle 'em. One after the other, they keep rollin' in and the person I see in the mirror is not the one I knew 2.5 years ago, except for on the surface, and I'm certainly not talking physical surface. I'm different now. I just am.