The Karl Kronicles - Continued
Posted on February 1, 2012 by Meg
On Jan 25th, I had a 2cm tumor removed from my back. It was routine stuff but I forgot to tell them that general anesthetic makes me nauseous because they have always assumed it did and given me lots of drugs for that. I have learned my lesson – and all y’all should too. If anyone ever asks you if general anesthetic makes you sick, just say yes. The next day I had my traditional morning-after fainting spell, followed by a little floor nap, then I was good to go and started tearing around my house packing stuff up to move. A little premature. Then I had to have a half dozen naps. This surgery has left me with a 6-7″ incision around the back left side of my waist. There was no swelling, minimal pain and I look like I have recently visited a South American country and had my kidney stolen. The difference of course is that the general execution is immaculate because I have an amazing surgeon. And I still have my kidney.. as far as I know.
I’m really freaking tired though. And then mom and I went to get flu shots so we’re both pretty hurting units. Monday brought a visit to the dermatologist who reassured me that as long as my tumours stay in the ‘squishy bits’, the situation is a lot less dire. This cheered me up. He has a point really. Karl and his goons have had a long time to take over my important bits and have yet to do so. If drug therapy can slow them down and stop their growth for a bit, I may get some sweet sweet living time in yet.
My oncologist echoed this sentiment today. Her plan is to have me on either a drug called Dacarbazine (DTIC for short) or a trial drug called Interleukin-21 (rIL-21 for short). I get to choose between just getting the DTIC, which is the standard (and only) treatment for Melanoma approved by Health Canada. or a a trial where the participants are randomly divided into two groups and one gets DTIC and the other gets the rIL-21. The general batting average for the DTIC is about 10% for slowing and shrinking tumours. The trial average for the rIL-21 is 20-25%, they think, so far. I am leaning toward the trial because if the baseline is DTIC, then if I join the trial, worst case scenario I will get what I would normally get. Best case, I get a drug that may work better.
The upside of both drugs? Neither causes squamous skin cancer on my anus. Or too much hair loss apparently. I get to officially sign the paperwork making my choice on Monday then we should start treatment the week of Feb 14th. Happy Valentines Day to my beloved body!
Oh, and the best news of all?? After describing all these trials and drugs, Dr. S looks up and she says “Oh, and I should mention that your CT scan shows no brain involvement”. After watching my dad die of brain cancer three and half months ago, nothing terrified me more than sharing his fate. Whomever made up brain cancer was a fucking douche and they really shit the bed on that one. Its is horrible horrible horrible. I had pretty much made up an exit strategy that involved a bridge if I had cancer in my brain.
BUT I DONT! I have been waiting since being diagnosed on Nov 25th for some good news and this is the first piece of it. I knew if I held out long enough, some bone would be thrown my way. Or maybe that was just blind optimism… or stubbornness. Who knows, and who cares?
Next on the agenda is packing up my apartment in Victoria and relocating to the family homestead in Ft. Langley for the duration of treatment. I will try to earn my keep by cooking, cleaning and entertaining my poor mom with off-colour stories. I will dearly miss all my chums and everything about life in Victoria, but its time to hunker down and reclaim some ground from this fucking horde.
Counter Attack: Week 1
Posted on February 16, 2012 by Meg
So they tossed the coin and I was put into the arm of the comparative trial with the new drug, Interluekin 21. Its not technically a chemotherapy because its not a high dose of a chemical toxin that will kill off all fast replicating cells. Instead, Interleukin-21 is a protein that stimulates my immune system to produce an abundance of “natural killer (NK) cells and cytotoxic T cells that can destroy virally infected or cancerous cells.” – according to Wikipedia. I have to get an infusion of the IL-21 once daily Monday-Friday during week 1, 3, and 5 of the trial then we leave it to do its thing for three weeks then I get a CT scan to see if its working.
By working, I mean that ideally, there will be no new growth from my last scan. We are looking for stability, maybe some shrinkage if we are very very fortunate. We suspect that I could live for a good while with the tumours I have if they would just stop growing and multiplying – especially the ones they have discovered lurking in my liver and my spleen. Those ones are now at the top of my personal hit list.
The trial is running at the Vancouver Cancer Agency so I have packed up my worldly goods, put them in storage and relocated to the family homestead Ft. Langley for the duration of treatment. This seems a good choice in terms of proximity to the cancer agency, level of constant surveillance from my dear family and also access to the family pantry. I’ve put on 4 pounds in the last week and a half!
Monday was my first day of treatment and we spent 9 hours in and around the cancer agency in downtown Vancouver. We had to be there at 7:30am for blood tests, then 15 odd x-rays of my spine at 8am, then a meeting with my oncologist at 9am, then nothing from 10:30-1pm (we visited my grandparents so I could have a nap), then I went to the chemo ward for my first treatment.
The nurses are very kind, they sit you down in a big old medical lazy boy, wrap you in warm blankets and then they wrap your hands in hot towels to make your veins puff right up. Its like a spa. My nurse said she would try and make my towels lavender scented for future treatments. I got an IV in my right hand for the treatment and an IV in my left hand for the blood that was taken right before and then 15 minutes after my infusion.
I have to admit that when I say “oh, I’ve totally gotten over my needle phobia”, I’m lying through my teeth. I hate needles. I hate getting them, I hate looking at them and I hate how you can feel their hard inorganic pinchy-ness against the fluidity of your lovely soft tissue. When you have one in each hand, and then you are supposed to pick up stuff and use your hands, its gross. Even when the needle is replaced by a soft plastic tube, its still gross gross gross. I almost fainted. My ears went all buzzy and I saw lots of pretty white stars… but then I sacked up and forced myself to get over it.
I had been told that although the infusion would only last one minute, I would start to feel the flu-like side effects as soon as it hit my veins, possibly even send me into some serious shivers. They gave me the whole dose and my hands got very cold really fast but the rest of me was fine. About 5 minutes after that I got what I will call a skull ache in the upper left quadrant of my face. My forehead, my eye socket and my sinus just started to pound. Soon after the rest of the flu descended upon every part of me. Then I went and sat down to wait for more blood work 2 hours after the drug had been given. Funnily enough, after 9.5 hours at the cancer agency, and a heck of a lot of stuff, the final blood test of the day was the most painful thing that happened. A student asked me if she could start the needle and I told her that I had already had 3 needles that day so I would prefer a pro. Her supervisor did the test instead and it was the most painful, fast, efficient needle I’ve ever had. No time was spared for delicacy or comfort. Now I know to let the student do it next time as she would have at least worried about hurting me.
I have now had three doses of the IL-21. I will be heading into Vancouver for another one today and again tomorrow. The ongoing side effects are similar to a bad flu. My whole body aches and I have an omni-present skull headache. I keep swinging from extreme cold after treatment to extreme hot flashes the rest of the time. Its like a preview of menopause I guess. The upside of all this is that the agonizing all over body pain I was having in Victoria while I prepared to move has almost evaporated, I’m sleeping like an (overheated) baby and my appetite is better than it has been in months. We shall see how I feel next week as the drug levels drop in my system. I think there might be potential to feel really good. My spleen and my tumours hurt a lot. Maybe its because my spleen is so busy and my tumours are getting shit kicked with some Killer cells. I like to picture these cells as a little cellular pit bull named Killer, and once they latch on to Karl’s kronies, they wont let go.
Time will tell.
Counter Attack – Week 2 & 3
Posted on March 3, 2012 by Meg
After week 1 of the trial and my first five doses of IL-21, it took until the following Tuesday to start to feel human again. I got a funky rash starting first thing Saturday morning and the hot flashes and night sweats extended well into the following week. By the following Friday, I felt okay enough that I went to Victoria to tie up some loose ends, visit a bit and sup on the tasty delights this city has for me. Oh, and buy a lot of wool! It was like a petite holiday.
On Saturday, we took Mr. Bear for a walk. Mr. Bear is my beloved’s roommate’s dog. He is a plump-ish German Shepard/Rottweiler looking chap who has the most pleasant disposition of any dog I have ever met. We wandered all over Caddy Bay beach with him and when I got tired and had to sit down, he would trundle back and sit with me until I felt better. I think he can tell I’m sick. Its his doggy acumen. Anyway, walking this dog equals an enormous boost in morale, as does being outside in the sunshine, on the beach and breathing the beautiful salty air. The only downside of my trip to Vic? I am a sensitive princess now and can only sleep in fluffy big beds. Sleeping on a futon with memory foam for two nights destroyed my back and my hip and I have been hobbling around ever since.
I started round two of drugs on Feb 27 and after three doses had no side effects at all. This is shocking as my side effects started immediately after I got my dose the first time. I started pointing out the lack of side effects and so as fate would have it, by Wednesday night I started to feel a bit funny. It was the usual mixed bag of tingly hands and feet, too hot or too cold but never just right, headache etc. Even now though, the side effects of round two are very minimal compared to the first go around. I do feel like Mr. Freeze and the Human Torch are fighting a turf war on me though.
I declined having a tube IV installed in my forearm that would just stay all week. It just a fucking grossed me out. I’d rather get 5 IV’s than walk around for 5 days with a piece of tubing strapped to my arm and my vein so they could give me one minute of drug per day. I met a young guy on Thursday who showed me his port that was installed in his upper arm and piped right through his veins and into his heart. It had been in since last October. His chemo drugs were bright orange and so caustic that if it comes in contact with his skin, it burns holes in it! I feel so lucky and thankful to be getting the drug I have.
I also had a bone scan this week to see if there has been any further spread in my bones beyond my right shoulder, one of my vertebrae and a rib. My hip hurts terribly and my oncologist immediately assumes its because the joint is full of melanoma. I have a different theory. I think its because three months of sitting on my ass, high on drugs and getting no exercise has made me a weakling. My back is sore because the muscles that hold it n place are weak. My left groin is full of ever tightening scar tissue and so is it surprising that my left hip is all outta wack? When I expressed this opinion to my oncologist, she sighed and said she was a cancer doctor, not a joint doctor and so we would rule out disease in the hip then send me off to a physio for some proper muscle rehab. Results of said scan are not in yet.
I do not want to be one of those patients who is fine with sitting around and having their body deteriorate as a result of the side effects of cancer. I want to do everything I can to make sure I am as strong and as structurally sound as possible in every respect beyond the disease itself. I refuse to accept that things will just get progressively worse and that I should just get used to it. I wont. I am determined and stubborn and I refuse to let myself be weak if the alternative is a possibility. Also, in my non-medical and unprofessional opinion, this delightful drug is working. Some of my superficial tumors very near the surface are clearly less obvious than they were a few weeks ago and a bit harder to locate. Some of my tumours feel like they are being jack hammered from the inside. Not a comfortable thing at all but encouraging. Either the drug is working and they are shrinking a little, or I have bulked up and have a nice layer of fat over them now. Too soon to say officially, but either way, that represents a victory.
Counter Attack Week 4, 5 & 6: Foot Long Poo Sandwiches
Posted on March 20, 2012 by Meg
WARNING: No plucky, feel-good messages ahead. Its mostly drug drudgery. Sorry.
The last two weeks have been brutal. In the week after my second round of drugs, my body just started to give out. I’ve been having on going problems with muscles atrophying due to in inactivity while recovering, rampant pain issues caused by both my (lack of) muscles and the chemo drug itself and I can no longer sleep because I am in too much pain. Not exactly fun times. I’ve started seeing an RMT and Physio to try and straighten me out and get me cobbled back together.
I had my third week of treatment last week and had very few side effects until Friday about 2 hours after my chemo at which point every side effect this drug can have hit all at once. My blood pressure dropped down to that of twitching road kill and I spent the next 18 hours horizontal and unable to hold up the weight of any part of me. Needless to say I was taking a lot of pain killers and sleep aids so I wasn’t just lying around sounding like a cat giving birth. By Sunday night I finally took half a Tramadol which is like T3 but sans caffeine and real opiates. It doesn’t bung you up but they don’t really know how it works. It certainly is an effective pain killer and I slept for a solid 7 hours but sadly it made my blood pressure drop even more and I fainted as soon as I got up Monday morning.
I’m becoming a seasoned fainter. Not as good as those delicate ladies of novels with their fans and their smelling salts, but I can sense it coming and usually have about 20 seconds to either lie on the floor or plonk down in an arm chair. This was the case on Monday morning. I warned my mother I would faint, arranged myself nicely in the largest chair and out I went. Turns out the best muscle relaxant in the world is being unconscious because when I woke up, my left shoulder which has been all kinds of knotted up for weeks felt quite better.
The chemo drugs got their second wind yesterday and made both my legs and my back tense up so that every square inch of them feels like its on fire. I also feel like I have a terrible peeling sun burn all over my back and legs, but there is nothing visible. All the nerves that run the length of my legs are also inflamed and throbbing with every movement and breath. I’m going to assume that this is the chemo drugs and not a new and permanent state.
I now have two and half weeks of down time before a CT scan to see if all this horrific pain has been worth it and if my cancer is actually taking a beating. I know for certain that the tumour they are using to monitor their success is growing rapidly. I know this because it is growing right next to where the original Karl was in my left groin. This one is a lymp hnode though so its lodged in that little crease between where my abdomen and my leg meet and it is now in the way when I try to walk. In fact is making me walk like Yosemite Sam. The rest of my tumours, its hard to know. They certainly hurt to a degree that would imply something terrible is happening to them. But have they kept proliferating through this? We will find out after the CT scan I guess.
I had made elaborate plans for all the things I wanted to do during this little break. People to visit, shows to see and beer to drink. Sadly, all that is pushed aside until I can get myself walking again. As it is, I can make it to the fridge and half way back with the occasional shuffle hunch lurch around the living room before my legs start to give out. I’m scaring the cats but I like to say I’m rehearsing should I ever be asked to play Richard III.
I hope this passes and I hope to be able to be up and about and walking semi normally before more of this damn treatment starts after Easter.
Now here is a link to something that always cheers me up in case this post got you down.
Down time? Not really.
Posted on March 30, 2012 by Meg
Here is the quick and dirty version:
1. Im still having crazy nerve pain in my legs thats keeping me from lying down and sleeping. So much so that I am mixing all kinds of drugs to try and find something that will eliminate the pain enough to actually fall asleep. Tonight’s magic elixir is brought to you by the BC Cancer Agency and will be a delicate mixture of ibuprofen, codeine, and zopiclone. It may make me sleep for a day and half, but I’ve got a bit of a deficit going so thats not too bad. Many thanks to all my chums who made suggestions for sleep aids.
2. I lost 11lbs between March 12 and now. From where?? How? Perhaps it was muscle atrophying from complete lack of movement. Who knows. I am trying to bulk up by eating a great deal of cake.
3. Karl Jr., the cancerous groin lymph node, has been using this down time to get enormous! I may have to rename it Karl II as Jr. is no longer appropriate. My stand-in oncologist has arranged to have Karl Jr. treated with radiation next week.
4. The downside is that the growth of Karl Jr. may constitute disease progression in the eyes of my doctors and the trial which may mean I go off the Interleukin 21 and start something new and nastier with much more serious side effects. This all depends on the results of the CT Scan I will have on April 4th. If the disease has spread further internally, we will know then and a change in tactics will need to happen ASAP.
5. My mother is AMAZING. My brother and my sister are putting aside the mental scars of years worth of heavy handed ‘big sister-ing’ and are taking very good care of me too. Brother is keeping me fed and sister is digging me out of bed when I’m hopped up on whatever and stuck under the blankets.
Joy this week has been brought to me by family, friends, postcards, a red flyer wagon, a St. bernard puppy and my trials nurse at the BCCA.
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.
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.