Posted on May 27, 2012 by Meg
I’m home! After too many days in the hospital, I decided to spring myself last Thursday. I’d had enough of being an experiment and I decided to leave. I guess its usually the Drs who decide when you leave but I just did it instead. I’ve spent my professional life organizing schedules and events so I exercised all those muscles to get me out. I had my drugs pre ordered and waiting for me on the outside, my get-away driver all lined up, my mid day drugs perfectly timed for max pain coverage for the BUMPY Hwy 1 ride home, and a big hearty lunch served right before we left. I even timed it all to avoid rush hour and it was only a 40 odd minute drive. You can’t get a lot done from a hospital bed but I was quite excited that I was able to do all that.
Now that I’m back at home, I’m administering the new drugs myself and figuring out a schedule that works best. When I was in the hospital, they were giving me things at weird intervals and in weird combinations but here, I get to do what works for my body instead. You may be thinking that sounds crazy but there were more than a few times in the hospital when I was given meds that weren’t mine and meds that needed to go with other things but were served up separately by hours. I’m quite glad that I know these things and can correct them since they don’t seem to make it into my charts. The pain part of this equation is definitely working itself out, the only down side is that every day is totally dominated by a drug schedule that has me taking a handful of pills, an oral syringe or a big glass of laxative drink every 2-3 hours. C’est la vie though, it could always be worse! And i have to say that my new pain drugs taste really good. Like gin in fact AND if spaced between doses, I can have a wee spot of booze with this drug. Little silver linings to this otherwise ominously black cloud situation.
Bodily, I wake up each day to something new and off. The nerve damage brought about by cancer growth in my spine and pelvis is making my legs less functional daily. Standing is getting harder. I’ve got new lumps popping up all the time but one that is shrinking and one of the ones we spot welded a month ago has tripled in size. Its all a total shamozzle of unknown. It is scary that things are progressing so quickly but that nothing will be done medically to stop or slow it. I met with my pain management specialist and my nurse in Langley today and finally asked for a prognosis and some details about what to expect as I continue down this road. The time line she gave me is measured in weeks but is prefaced by ” we don’t really know but….” . That was a bit if a shock but something I suppose I needed to ask. We have started the arrangements for hospice care when I need it so I will be able to transfer quickly to a facility when home care is no longer realistic. The reality of this situation is setting in and I am pretty fucking dismayed that death is really staring me in the face. I don’t like to think of myself as a package that will be delivered in 6-8 weeks, and if my will power, brain etc has any damn say in this, I will push that date as stubbornly far as possible.
The Karl Kronicles - Continued
A Report from the Field
Posted on June 4, 2012 by Meg
I had hoped that my blog would detail happy drugged up comfy times for a while. Sadly not so as the campaign to sack my city has sped up at an alarming rate. In the last week and a half I have re-cracked my humorous twice, my liver has swelled to fill every available nook and cranny in my abdomen, my left leg has swollen to the point where the skin is numb, and I can no longer stand or lift my own body weight. The drugs are covering most of the pain and we adjust the dose as needed. Despite a new space age fancy cushion for my chair, rolling from our house to ‘dowtown’ Ft. Langley jostles my bones and my organs in a way that is not comfy and transferring from chair to car is scary. I guess that makes me a bit house bound but the folks in the house with me are making that very much ok.
New developments since last week…
1. I think I will be having a hospital bed installed in my house. While generally that would not be a cause of joy, it will make my sitting up and elevating much easier and I wont always feel like a folded grilled sandwich.
2. I was trying to watch movies today and I came across One Week. Its a Canadian film about a man who is diagnosed with stage 4 cancer with as little as 1 week to live and instead of getting treatment, he buys a motor cycle and heads west. I saw this movie originally before my first diagnosis and watching it today really just clicked on a lot of stuff that fits. The idea of escaping your illness, that your doctors are wrong and that you should be able to choose how you are treated and decide whether you die of your disease or from the insane drug regime the put you on. Anyway, if your interested, its on Netflix.
Love to all and enjoy the rest of your weekend.