The Karl Kronicles - Continued
The Age of Meg
Posted on May 7, 2012 by Meg
After a full week of rest at home, we made it down to the cancer agency last Friday for some blood work to finish the interleukin trial I was on and to check in with my oncologist to “see how I’m doing”. Doctors have been throwing around the possibility of further chemo treatments tentatively for a few weeks but with the recent and aggressive bone and organ growth, these courses are no longer worth it. The single digit chances of improvement that could be brought about by either drug is so remote that the drugs would likely kill me faster than the cancer.
No one wants to hear the “Go home, get comfy and make the most of your time” speech and let me tell you, oncologists really don’t want to deliver it either, but its been done. In a way it is somewhat liberating to know that I am my own master now. I can eat anything I want, medicate to my heart’s content and live a life of frilly bed jackets. In a way, we are decisively choosing Team Meg as I have greater faith in the functional bits of my body to keep me going physically and immune strong as long as possible. My condition will worsen although its unknown how, when or where. I expect to have alot of bone trouble as that really seems to be the place most of the damage has taken hold recently. I am discovering new tissue and bone lumps almost daily and it is not good for morale! If I grow any real painful bone doozies, I can get them to spot weld for fun.
So whats next? Comfort. Part A is a drug regime to keep me as unaware of pain as possible and Part B is contentment. Time to give up pride, expectation etc and fall back into the amazing safety net of love the universe has built for me. Sounds wanky as fuck but its gonna work.
Karl will be mentioned less in future and this blog will be more about me, it will feature shit that makes me happy and might get a bit philosophical. Add your two cents at any time, come visit or just ring me up if you like. The good news is that my beloved has been taking immaculate care of me for the last week or so and in his very strong arms I have managed 6 little steps together. Determination and pure stubborness still remain so who knows whats possible?
Fun Stuff plus Spa Visit II
Posted on May 16, 2012 by Meg
Many things have happened since my transition into ‘a palliative lifestyle.’ I got a new wheel chair which is the porche equivalent of mobility aids.
It turns on a dime, is the perfect size and its damn stylish. If I gotta be chair bound, this is the sweet ride I’ll be zooming in. I also had a BIRTHDAY PARTY! Mean kids at age 9 had made me too sensitive to have a party since but we got out the big guns, gathered the gang and garden partied harder than… Why can’t i think of a rocking garden party simile? It was a phenomenal day with so many lovely visitors and food and every good thing. I will make a proper homage to this when next at my lap top.
Spa Visit II:
This week, I’m back at the BCCA for some welding. The sling from my broken arm had been rubbing my rib and instead of getting along in sweet harmony, my rib sprouted a 10 cm tumour on the outside and a bunch more squashed into the parts where the sling sits along the back of my waist. Its all very painful because my abdomen just isnt the right size for whats in it.
The drive on the highway from Langley to the Van BCCA is so rough and the treatment is so uncomfortable that they are letting me sleep and medicate here until complete. They are also weaning me off so much hydro morphone to relive some of the side effects and see if better pain management could lead to a generally higher lucidity. After three radiation treatments I say its decisively not working and I got to experience how much pain I fully have when not covered by a baseline dose. Mom rallied the troops and I had my beautiful grandparents and mom sitting with me while they pumped me up on fast acting drugs and anti-nauseat. By 10pm, I was almost good to go and really wanted to suggest we escape and get some Pho or something. As usual, I was told maybe I should just rest instead. Pain management experimentation continues through Sunday. Hopefully once the ‘flare up’ pain from the zapping subsides, my pain will be ignorable. Fingers crossed.
The Gilligan’s Island of hospital stays
Posted on May 23, 2012 by Meg
Im going to try and explain the last 8 (?) days. I was admitted to the hospital ward of the cancer agency on monday May 14 for 4 days of consecutive radiation treatments on some big lumps on my right side. The drive in was uncomfy so they decided just to keep me here for the duration of the welding.
On day 2 of radiation, the Dr’s told me they didn’t think my pain management system was working and they wanted to switch me to a drug called Fentanyl. Its an artificial opiate that is administered via a patch on your skin into the fat just beneath and into the rest off your body. Apparently it works like a hot damn for most people and once the dose is correct. To calculate the correct dosage, they took me off the 12 hour long lasting hydro morphone that was providing my basic pain coverage, put a patch on my arm and told me that anytime I had pain to buzz the nurse for a break through dose of fast acting hydromorphone- FAH henceforth ( takes 10 to 15 minutes to kick in). The amount of FAH required to cover my pain needs in 24 hours is then converted into the Fentanyl equivalent, the dose of the patch gets upped, vooila! Pain Management!
Sadly, there were several problems in making this work for me
1 i have no body fat anymore. Just in time for bikini season but it also means the patch didnt distribute the drugs properly.
2. FAH is not sufficient to soley cover my general cancer body pain PLUS the radiation pain. It just isnt so i can take it till I’m loopier than fuck but it didnt actually relive the pain.
3. Long weekends. Having completed the radiation on Thursday but completely humped the dog on the pain control, I stayed in the hospifal over the weekend. Dr’s take long weekends too so i lay here for 3 days wearing useless patches, taking ineffective drugs and trying to distract myself with eating incessantly like a foie gras goose and colouring. My humour and mood have been black and my extended family have made it as pleasant as possible.
On Tuesday, I was ready To demand they rip the patches off, give me my old drugs and get me the hell out of here. I talked to my pain specialist in Langley on the phone by 8:30am to get her advice and then I had my Dr’s here paged and we had a sit down by 9am. It was quite clear to all of them what the course was but there just wasnt anyone on deck with a licenae to prescribe it over the weekend.
The Answer to all my problems? Methodone. Not what i wanted to hear as to layman i pictured them putting me on crystal meth. Of course rhey are not the same and i got my first oral dose at 11am and by 11:15 i was not in pain. Now we take a few days to phase out the patch, equalize the meth and then, hopefully i can go home! I’ve written this right after my first am dose and its taken an hour and a half on an iphone. Not sure if this is a good indicator of future cognitive abilities on this drug.