The Karl Kronicles - Continued
I don’t glow… I checked.
Posted on April 10, 2012 by Meg
Since the last post, I am happy to report that the horrid leg pain is starting to clear up! The invisible sun burn only hits once every coupe of days, the incredible back-butt-hip cramp seems to be intermittent and stretching it out is easier than before. I am coming to an understanding with my legs and we are even starting to walk more. Having had several visitors of late, I’ve been shuffling around Ft. Langley from bench to bench almost daily. This sounds inane but for me, its huge. The secret is stretching and not sitting for too long at once.
Having reported all the unpleasantness of my last post to my lovely nurse at the cancer agency, they promptly brought me in for a check up on March 29. I was given prescriptions for codeine (for pain) and Zopiclone (for sleep) and instructions for how to medicate for pain in a daily way. Sleep!!!!!! Sure I may be a druggy now but I don’t care ’cause I sleep 8-9 hours a night and it is good. Healing can’t happen without that and if I gotta dope to do it then hand over the little viagra-esque pills to make it happen.
The other outcome of that visit was the decision to go ahead and give me some radiation on Karl 2 and an excruciatingly painful, but pea sized, spot on my stomach. In oncology slang, this is referred to as ‘spot welding’. I went in the following week to meet my radiologist and she wrote me a prescription for some radiation – electrons on my stomach so they wouldn’t penetrate into my organs and photons for K2 as we needed it to penetrate into the node about an inch or so. Then she got out a bunch of stencils and drew the dimensions and borders of where she wanted the beams to go. I was wheeled off to the radiation lab and had the prescription filled with about a minute of radiation on my stomach and about a minute and a half on my groin. The radiology lab is run by super models. In fact, the baby-boomer-workforce -turnover thing has happened at the cancer agency and, save the oncologists, senior administrators and janitors, it is almost entirely run by beautiful young women. Note to self: try to keep up with their level of eyebrow grooming.
I imagined that radiation would leave me with KFC style extra-crispy skin and a rash for a few days but it didn’t even hurt. I’ll get another dose later this week on K2 and it should flatten out and disappear in a few weeks.
I also had a CT Scan last week to see if this is all working. More on that later.
Ditzels and Drips.
Posted on April 11, 2012 by Meg
Yesterday I got the results back from my CT Scan. The scan is the way they assess their degree of success with any given course of treatment as it shows tumours in soft tissue, bones and organs.
My scan shows that there was some shrinkage of the existing tumours in my liver as well as some in my soft tissues (the ‘superficial ones’), it also shows that some of the existing tumours have grown (in my back, ribs, spleen, lumbar spine etc) and there is also some new growth and spread into my pancreas, bones, lungs and in little nodules between my muscles. My radiologist let the lung thing slip last week and said that I had a bunch of ditzels. I disregarded this as nonsensical because I didn’t think ditzels was a real word. That’s called denial.
My darling sister googled ditzel for me the other day and it turns out it is a real thing. In fact it has two meanings.
1. According to Urbandictionary.com its a word used to describe any part of the body that is not ordinarily appropriate for everyday conversation. For example: “Susan is always walking down the hall with her ditzels hanging out.”
2. In medical circles, a ditzel is a very small (3–5 mm) pulmonary nod-ule, and according to some radiologists “an object of small stature that is of little consequence.”
Turns out I have quite a few ditzels in my lungs. Medically this is not surprising as Melanoma really like to hang out in lungs because, I imagine, its so warm, cushy and oxygenated. My oncologist has told me that although the degree of spread of my disease is high, the actual mass is not. Most of them are smallish tumours and right now, today, I am still a fully operative human apart from the rampant pain and annoying side effects (reduced mobility). I should insert a shout out to both sides of my family here for a liver that is operating at 100% despite a STEADY stream of drugs and a hostile takeover.
Anyways, all this progression requires new treatment so I’ve signed up for a trial for a drug called Ipilimumab. Here is a nice Wikipedia link that will describe what the heck that is/does. Its another immune stimulant approach and may serve to stop the growth and spread of the disease for a time. As with most cancer treatments, the list of potential side effects is enough to make you sell all your stuff and go live in a shack on the beach in Thailand, anesthetizing your wasting self with the best opium the world has to offer until the disease kills you. However, I’m going to sack up with the pair of cancerous balls I’ve grown in the last year and just take the drugs. Its a 90 minute iv drip every 21 days for a some cycles then another CT scan. In between treatments I can “live a normal life” (wtf?!) unless I am having severe digestion problems that lead to a perforated bowel, then I will get to go to the hospital.
All in all, it was an informative day. My doctors and trial nurses are doing every damn thing they can to buy me more time and I appreciate it. They are even scheduling my chemo around my birthday so I can celebrate my 30th with a glass of gin that I’m not supposed to tell them about. Life goes on for me and those all around and thanks to my friends and family, the chocolate inventory is high. Be thankful for the small stuff in life. Except the ditzels. Could do without ditzels.
Checked into the cancer spa.
Posted on April 19, 2012 by Meg
Today I was admitted to the BCCA hospital ward for some emergency radiation and pain management. Im in room 530, hanging out. Visit if you like. Love to all!
A Week at the Cancer Spa
Posted on April 28, 2012 by Meg
I returned last night very weary from my 8 day sojourn at the Cancer Spa. The disease has now reached a progression where the rampant damage to my body is clear and adjustments must be made to how I live.
The most noticeable is that several of my vertebrae are now only about 50-70% bone and the rest is melanoma cells that have replaced, weakened etc the structural capacity so that the nerves running down the middle of my spine get squished. They keep calling it spinal compression. practically it means that not all the things my brain sends to my legs get there. Especially when I try to stand and my whole body just forks to the right and I fall down. I’m now confined to a wheel chair since my legs can’t be trusted. While the world is set up for this a bit, our house and our psyches are not yet. Just getting me in the house without a ramp required a transfer to a walker which led to a fall which led me to now having a permanently broken arm. The exact kind of homecoming we were trying to avoid. Im working on being a wheel chair bound left hander. It’s a challenge and keeps me focused through the drugs they got me on.
This brings me to the second reason for my spa visit: Pain Management! I couldnt appreciate how much pain I was in before and now that I am being managed heavily quality of life is better! I am on slow acting hydro morphone twice daily, ditto Gabapentin for spine related nerve pain, steroids four times daily to reduce inflammation in my spine and stimulate appetite and then some drugs to counter the side effects of those, plus fast acting 2 mg hydro morphine tabs for any break through pain that makes it through the safety net described above. Not chump drugs and we are way beyond codeine and ibuprofen country. It’s keeping me comfy though and pretty loopy too. I need to get weened of the steroids in the next few weeks if there is any possibility of any further chemo treatments and it’s just a matter of seeing what symptoms emerge as we fade out the ‘roids.
In the meantime, I’m going to rest at home and eat and try to fatten myself. Ice cream seems to be my food of choice these days and im embracing it. I have had an amazing level of love and care from family, friends, nurses, doctors, paramedics and everyone who has encountered me. Love is abundant in my little universe and that truly helps compensate for the failing structural integrity of my body.
How I Roll
Posted on May 5, 2012 by Meg
This post was started about 6 days ago when I returned from my stay at the hospital and was trying to adjust to being not only confined to a wheelchair but also having a broken (dominant) arm and operating through a drug regime that keeps me mostly pain free but doped like a psycho clown at a circus of the damned. Some rant has been removed because I need that energy for other stuff.
I should mention that I still have two legs! That said, the nerves that carry some of the instructions to my right one is being squished at my cancerous L4 (lower lumbar back) vertebrae and it means that instead of being standing legs they are now decorative legs. I can put weight on them 90% of the time in order to transfer from bed to chair to to toilet to car etc, where it is a pull weight up on left arm, pivot, sit down type business. Sometimes though, I pull my body up and the whole thing Spontaneously twists to the right, ankle to shoulder counting outing the floor. Most folk would then just get up. And that’s what I think too but then the legs just don’t. This exact fall has happened twice at home now and it’s all an exercise is high school physics and at least two people to get me up.
My family and I have spent the last few days figuring out what help I need now and what we can do to our house to make it more user friendly for me. Initially this means moving furniture so I can get through halls, taking cupboard knobs off to get us an extra 1/2″ clearance from bathroom door to toilet and generally trying to teach the cats that they should move for me. I am getting around mostly by nudging along on my tip toes and pulling sweet 360′s all in one direction until I get stuck on a rug, doorway, floor feature or similar then my team swoops into the rescue. When Im not in the chair, my brother, sister and beloved are in it constantly. maybe its the novelty but it means that they are all expert chair drivers when they take me out.
The biggest transition with the legs is independence. I need assistance for even the most basic stuff. Wake up in the am to pee? Need help into the chair, maneuvered into our skinny 70′s biff then transferred to loo then back. My brain hasn’t caught up. I wake up ready to roar out of bed every morning and quite quick remember that is just not on.
Progress is being made, life goes on. Walking upright with a stable spine was bar-none my favorite thing that enabled every other thing that I also liked to do. I am finding new activities, embracing help and I of course just signed up for Netflix. Take a walk to the can by yourself today friends and be happy you can.