I'm sorry but I just gotta complain about the food again. I can't help it. I don't know how the food is at other hospitals but at Princess Margaret 80% of the time they might as well bring me dog food.
You know what's really fuckin hard to screw up? A grilled cheese. They just brought me one. Shit bread, shit processed cheese, not even melted anymore, and ONE little packet of ketchup. Guess what, I ate it. Most patients have to eat it or they'd starve. I on the other hand have huge food support. People bring me home cooked meals just so I CAN STAY ALIVE.
Honestly, these poor cancer patients are fighting for their lives and they need food, they need carbs, protiens, nutrients to cope with the powerful and draining drugs. What do they get? Miserable little microwave dinners. I went through a dry spell with my home-cooked food and I was constantly HUNGRY. Not only is the food miserable, its enough to feed a small animal. No you know what, they like to eat a lot too.
Oh and another thing, when I was first going through chemotherapy I was really sick. It hit me really really hard. I threw up a lot. One day my dinner was brought in. I, not knowing what perils awaited, opened up the tray to reveal a wobbily, greasy, slimy, mold of some sort of meat???? I dont fucking know what it was but I instantly threw up. Thanks kitchen crew! And every now and then the image of that meat blob would invade my mind's eye and instantly trigger vomit!
Cut backs they say. What shit. Heres a solution. You have a doctor who misdiagnosis someone. He or she screws up. A percentage of their bonus is taken and donated to the god damn hospital kitchen! I donno I am not a god damn administrator but something needs to be done.
Imagine with me a place where they bring you food that supports you during your treatment. A place where chefs take pride in their work, and noble work it would be. Real food to support the body in healing and repairing. This is a happy fantasy...
Sunday, June 6, 2010
Saturday, June 5, 2010
Doctors: Indeed, they are only human.
As you may know I have been under the influence of a mysterious fever ever since I took a daypass for Victoria Day. Fever is usually quite a serious thing because it indicates that there is an invader in your body and of course, for leukemia patients in treatment, we can't do anything about it (or can we? more on this later). It cracks me up as I see doctors throw everything they got, everything they think should work, at this fever to no avail.
To me this fever is beyond them. It was really funny actually the entire Infectious Disease team came to visit me. Obviously baffled they ask is there ANYTHING you can tell us, any pain?? any differences of sensation? Anything?! I had to be honest, I feel fine, and in my heart I know I will be fine. This fever is not my enemy, infact it is probably helping to educate my body on feverism, because when you do have an immune system the healthiest way to react to cold or flue is to light up like a fire and burn the bad stuff away.
Something greater is at work. But a doctor could never understand that. They are stuck in the scientific world, they invested many years of their life and money into it, so they will continue to scan, sample, grow culture, and blindly hurl their bombs of biotic destruction. They're probably destroying a lot of good bacteria along the way, but i'll allow this blundering for now. Let me tell you though. If any of these antibiotics or antifungals or antivirals brings any sort of negative effect to me I will demand it removed. Ultimately I am in charge of what goes into MY body. They cannot refuse me and if they can through some bullshit I may have accidently signed I will pop and drain any bag they put up of the stuff.
It is important to note I am not telling you to go against your doctor. Most of the time they do an excellent job and they should be trusted. If your doctor isn't the trustable type, or bothers you in some way you have the right to request another. The bond between patient and doctor is so important. I love my doctor, he is incredibly brilliant but he also takes the time to text.
It's funny throughout this whole thing there has been one very vivid image in my head that accurately represents this situation. It is a scene from Peter Jackson's Lord of the Rings where they encounter the legendary monster the Balrog. Gandalf explains to the fellowship that "SWORDS ARE NO MORE USE HERE!"
Indeed, dear doctors, this creature of heat is beyond your petty little medicines! Fly you fools!
Now that I think of it the Balrog could be seen as Gandalf's crises, his trial, his leukemia. And how he tackles that challenge! Best part is he comes out with shiny new robes and the greatest power to be attained in his order. He is my hero!
To me this fever is beyond them. It was really funny actually the entire Infectious Disease team came to visit me. Obviously baffled they ask is there ANYTHING you can tell us, any pain?? any differences of sensation? Anything?! I had to be honest, I feel fine, and in my heart I know I will be fine. This fever is not my enemy, infact it is probably helping to educate my body on feverism, because when you do have an immune system the healthiest way to react to cold or flue is to light up like a fire and burn the bad stuff away.
Something greater is at work. But a doctor could never understand that. They are stuck in the scientific world, they invested many years of their life and money into it, so they will continue to scan, sample, grow culture, and blindly hurl their bombs of biotic destruction. They're probably destroying a lot of good bacteria along the way, but i'll allow this blundering for now. Let me tell you though. If any of these antibiotics or antifungals or antivirals brings any sort of negative effect to me I will demand it removed. Ultimately I am in charge of what goes into MY body. They cannot refuse me and if they can through some bullshit I may have accidently signed I will pop and drain any bag they put up of the stuff.
It is important to note I am not telling you to go against your doctor. Most of the time they do an excellent job and they should be trusted. If your doctor isn't the trustable type, or bothers you in some way you have the right to request another. The bond between patient and doctor is so important. I love my doctor, he is incredibly brilliant but he also takes the time to text.
It's funny throughout this whole thing there has been one very vivid image in my head that accurately represents this situation. It is a scene from Peter Jackson's Lord of the Rings where they encounter the legendary monster the Balrog. Gandalf explains to the fellowship that "SWORDS ARE NO MORE USE HERE!"
Indeed, dear doctors, this creature of heat is beyond your petty little medicines! Fly you fools!
Now that I think of it the Balrog could be seen as Gandalf's crises, his trial, his leukemia. And how he tackles that challenge! Best part is he comes out with shiny new robes and the greatest power to be attained in his order. He is my hero!
Thursday, June 3, 2010
Make Cancer Your Ally
I have had the most amazing day so far and it's only 11am. I awoke after a good night's sleep to find out my fever, which I have had since Victoria Day had broken. The doctors kept trying to find what kind of bacteria was causing it and they tried one anti-biotic combo after another to no avail. Then today it just cleared up. That leads me to my next piece of news which makes me soul glow with glee.
The doctor just told me that my white count is starting to come back and it is coming back perfectly which puts any chance of relapse while inpatient at 2-5%! FUCK YES. See, when I first came here I met with a young guy, twenty years old, his mom wanted me to share my experience. And upon entering his room I saw the same sad sight I usually see. No hope, no life, no optimism, no anger, no nothing. His face was empty and drawn. I would walk by his room and he would be on his bed with the tv right in his face.
This is the case with probably 80% of patients? I mean for someone in their 80s, OK, but when you are young, when your body is at its most resilient, when it can take the most, when you probably dont have any other health complications, you have a fighting chance! Heck, the best fighting chance.
Anyway, in his state, he went through a round of chemotherapy, one month of the nasty treatment and guess what, he relapsed. It makes me so sad. He has to go through it again and who know what the result will be unless he changes his attitude towards this. And me hearing that this young guy relapsed right away put a thought of lingering fear in the back of my mind. So to get that news today was AHHHHHHHH yea.
That being said I am going to find his mom and have a long chat with her. That kid needs a lake to yell at, bad.
You see, it has become clear to me, that if you treat cancer not as this monster that is trying to end you, but rather as a powerful force that brings before you a question: "Are you ready to become who you are meant to be?" Unfortunately cancer has to be accompanied by very difficult treatments, but that could change in the near future, and it is the danger, the fear it brings that are essential to the very growth one needs to experience.
I have an allegorical vision of my leukemia as a woman in a snake-skin dress with a big smile and incredible wisdom behind green eyes. Will you make battle with her or will you join her in the dance and shed your built-up layers of snake skin to reveal the true you.
LETS DANCE
The doctor just told me that my white count is starting to come back and it is coming back perfectly which puts any chance of relapse while inpatient at 2-5%! FUCK YES. See, when I first came here I met with a young guy, twenty years old, his mom wanted me to share my experience. And upon entering his room I saw the same sad sight I usually see. No hope, no life, no optimism, no anger, no nothing. His face was empty and drawn. I would walk by his room and he would be on his bed with the tv right in his face.
This is the case with probably 80% of patients? I mean for someone in their 80s, OK, but when you are young, when your body is at its most resilient, when it can take the most, when you probably dont have any other health complications, you have a fighting chance! Heck, the best fighting chance.
Anyway, in his state, he went through a round of chemotherapy, one month of the nasty treatment and guess what, he relapsed. It makes me so sad. He has to go through it again and who know what the result will be unless he changes his attitude towards this. And me hearing that this young guy relapsed right away put a thought of lingering fear in the back of my mind. So to get that news today was AHHHHHHHH yea.
That being said I am going to find his mom and have a long chat with her. That kid needs a lake to yell at, bad.
You see, it has become clear to me, that if you treat cancer not as this monster that is trying to end you, but rather as a powerful force that brings before you a question: "Are you ready to become who you are meant to be?" Unfortunately cancer has to be accompanied by very difficult treatments, but that could change in the near future, and it is the danger, the fear it brings that are essential to the very growth one needs to experience.
I have an allegorical vision of my leukemia as a woman in a snake-skin dress with a big smile and incredible wisdom behind green eyes. Will you make battle with her or will you join her in the dance and shed your built-up layers of snake skin to reveal the true you.
LETS DANCE
Tuesday, June 1, 2010
Arg, unhealthy "niceness"
I got moved to a shared room. My roomie is an old man with the sweetest kinda sadest energy about him. Anyway we were about to sleep and I told him my sleep is all over the place at hospital and I usually need a light to read at night when I can't sleep. Right away of course he says "Oh yea no problem, I am more worried about keeping you up with my snoring".
So of course I go to sleep, wake up at 3am fully awake no chance in hell of falling back to sleep. So I flick on my light, which admittedly is no bed-side thing, but leaves his side of the room fairly dark. Im happily reading away about homeopathy and a nurse walks in and says I gotta turn off the light. I tell her I asked permission and everything. She says "he wont say no".
It dawns on me that this is true and I hit the lights. "he wont say no", "no" a word with power, with deserving, with value for oneself. He cant say no. Maybe it would make him look like an ass, maybe I would think less of him, maybe I would I donno get totally enraged and throw a brick....honestly.
I have found this inability to say NO to be intrinsically linked with most cancer patients, at least ones dealing with Leukemia. Especially, and sadly, even myself. There is this unhealthy want to please everyone and really take nothing for ourselves. We feel we dont deserve it, on some level, and this sense of undeserving, this INABILITY to believe that yes we do deserve to be true to ourselves is guarenteed to be part of the inbalance that becomes disease in a body.
I am getting much better at it these days and I am surprising myself with things that, yes, may hurt some people, but need to be done for my own health and growth. A lot of the time the people are abusing those who can't say no aren't even aware of it!
The way to heal this, for all pushovers and "supernice" people is to KNOW that you are godliness. You are divinity. You are soul, the energy of the universe, you are glorious. You are infinitely powerful and you deserve everything and anything. Look inside and feel that undeserving, feel it to its utmost, realise the illusion that it is, and tell yourself "I deserve". Repeat it until you believe it, in its entirety.
I used to have trouble breathing through my nose all my childhood. My mom learned of this deserving thing, I started to believe it, my stuffy nose, that had become part of my identity, cleared up entirely without use of any type of medical aide. I didn't think that I deserved to breathe, thats how bad I was.
In addition to deserving, you need to get angry. This is a biggy also for leuk patients. I am working on this also, but anger, if used properly and in the right energy, is one of the powerful and direct forms of expressing your worth. I need to look into anger more and its kinda 4:41 am and my eyes are bugging out.
SO I will leave it at this. Find the power to say no, find the power to grow, and as you become a fuller and emotionally-healthier being there will be less and less room for disease.
Fin.
So of course I go to sleep, wake up at 3am fully awake no chance in hell of falling back to sleep. So I flick on my light, which admittedly is no bed-side thing, but leaves his side of the room fairly dark. Im happily reading away about homeopathy and a nurse walks in and says I gotta turn off the light. I tell her I asked permission and everything. She says "he wont say no".
It dawns on me that this is true and I hit the lights. "he wont say no", "no" a word with power, with deserving, with value for oneself. He cant say no. Maybe it would make him look like an ass, maybe I would think less of him, maybe I would I donno get totally enraged and throw a brick....honestly.
I have found this inability to say NO to be intrinsically linked with most cancer patients, at least ones dealing with Leukemia. Especially, and sadly, even myself. There is this unhealthy want to please everyone and really take nothing for ourselves. We feel we dont deserve it, on some level, and this sense of undeserving, this INABILITY to believe that yes we do deserve to be true to ourselves is guarenteed to be part of the inbalance that becomes disease in a body.
I am getting much better at it these days and I am surprising myself with things that, yes, may hurt some people, but need to be done for my own health and growth. A lot of the time the people are abusing those who can't say no aren't even aware of it!
The way to heal this, for all pushovers and "supernice" people is to KNOW that you are godliness. You are divinity. You are soul, the energy of the universe, you are glorious. You are infinitely powerful and you deserve everything and anything. Look inside and feel that undeserving, feel it to its utmost, realise the illusion that it is, and tell yourself "I deserve". Repeat it until you believe it, in its entirety.
I used to have trouble breathing through my nose all my childhood. My mom learned of this deserving thing, I started to believe it, my stuffy nose, that had become part of my identity, cleared up entirely without use of any type of medical aide. I didn't think that I deserved to breathe, thats how bad I was.
In addition to deserving, you need to get angry. This is a biggy also for leuk patients. I am working on this also, but anger, if used properly and in the right energy, is one of the powerful and direct forms of expressing your worth. I need to look into anger more and its kinda 4:41 am and my eyes are bugging out.
SO I will leave it at this. Find the power to say no, find the power to grow, and as you become a fuller and emotionally-healthier being there will be less and less room for disease.
Fin.
Sunday, May 30, 2010
LOL nurses
Unfortunately I have had the pleasure of meeting most nurses that work in the inpatient units at PMH. They are all great at what they do but I got beef with some of them. Heres a little list of beef with some of the nurses at PMH.
C: First thing that hits you about C, at least towards me, is her shit attitude. It's not real but it is a cover that has taken over her life. First thing in the morning she opens the door and gives you a really lethargic look. Then she shifts into being your mom and asks you a bunch of questions like "why are you pants here?" "what bag is this?" "why are you reading a book" all in a kind of an old, whiny kelly-from-the-office voice. Is that really how you should greet cancer patients? with disapointment and verbal bombardment? I have broken through and seen the nicer C a few times (she asked a dumb question about my mom) but man, she got bitter down pat.
C: Big woman. I don't know how she pulls off those twelve hour shifts of constant running about. But I will always remember this time she was trying to examine my mouth and she was breathing the WORST smellling breath right down my throat. It wouldn't end and I was really starting to get scared of infection. I didn't want to be rude though because she is one of the sweetest people...I should have tho. The thing though about her sweetness is it never shuts up. Even at 6 in the morning when she takes your blood work SHE WILL START MAKING CONVERSATION WITH YOU. It has given her a reputation and I do think the nurses dont schedule her with young folk anymore.
T: She is another one with an attitude problem, it's probaby put on for me, I really don't know why. She is a good nurse but she has bad habits or forgetfulness, I don't know. She will ALWAYS leave my damn door open when she leaves the room. This is a huge problem cuz it rushes in all the cold hallway air and I lose my privacy, which is important when you're peeing in a bottle. I sometimes wonder about her abilities outside of nursing. It is like nursing has taken over her brain and left little room for anything else. Some of the questions she asks...I wont get into it. She wanted me to shave my own head. I said I would do the front if she could help with the back. She said she doesn't know how. I said had she ever peeled a potatoe or painted an egg? That got her and then I find out when she gets to it shes seems professional, even busted out some scissors for the thicker parts! Whatever.
E: The last one I want to leave you with is this nurse, usually does a fine job, kind of old and worn out, maybe cranky sometimes, but always proud of her nursing ability. One day she was doing my 6am bloodwork. That involves a series of undoing clamps rerouting flow and filling testtubes etc. She set the tubes up but no blood was coming out. Remember this is 6am here I am an unhappy zombie at 6am. So she right away thinks its something wrong with me and starts telling me to move my arms up, cough 3 times, sit up, bend over, all of this being so LAME at this hour. Still, nothing came. She was a little stumped. So in a daze I slapped my hand down on the first clamp on my line and low-and-behold it was still locked. I undid it and the blood started flowing and then she says "There, got it" I just smiled inside. Didnt fall back asleep though :(
C: First thing that hits you about C, at least towards me, is her shit attitude. It's not real but it is a cover that has taken over her life. First thing in the morning she opens the door and gives you a really lethargic look. Then she shifts into being your mom and asks you a bunch of questions like "why are you pants here?" "what bag is this?" "why are you reading a book" all in a kind of an old, whiny kelly-from-the-office voice. Is that really how you should greet cancer patients? with disapointment and verbal bombardment? I have broken through and seen the nicer C a few times (she asked a dumb question about my mom) but man, she got bitter down pat.
C: Big woman. I don't know how she pulls off those twelve hour shifts of constant running about. But I will always remember this time she was trying to examine my mouth and she was breathing the WORST smellling breath right down my throat. It wouldn't end and I was really starting to get scared of infection. I didn't want to be rude though because she is one of the sweetest people...I should have tho. The thing though about her sweetness is it never shuts up. Even at 6 in the morning when she takes your blood work SHE WILL START MAKING CONVERSATION WITH YOU. It has given her a reputation and I do think the nurses dont schedule her with young folk anymore.
T: She is another one with an attitude problem, it's probaby put on for me, I really don't know why. She is a good nurse but she has bad habits or forgetfulness, I don't know. She will ALWAYS leave my damn door open when she leaves the room. This is a huge problem cuz it rushes in all the cold hallway air and I lose my privacy, which is important when you're peeing in a bottle. I sometimes wonder about her abilities outside of nursing. It is like nursing has taken over her brain and left little room for anything else. Some of the questions she asks...I wont get into it. She wanted me to shave my own head. I said I would do the front if she could help with the back. She said she doesn't know how. I said had she ever peeled a potatoe or painted an egg? That got her and then I find out when she gets to it shes seems professional, even busted out some scissors for the thicker parts! Whatever.
E: The last one I want to leave you with is this nurse, usually does a fine job, kind of old and worn out, maybe cranky sometimes, but always proud of her nursing ability. One day she was doing my 6am bloodwork. That involves a series of undoing clamps rerouting flow and filling testtubes etc. She set the tubes up but no blood was coming out. Remember this is 6am here I am an unhappy zombie at 6am. So she right away thinks its something wrong with me and starts telling me to move my arms up, cough 3 times, sit up, bend over, all of this being so LAME at this hour. Still, nothing came. She was a little stumped. So in a daze I slapped my hand down on the first clamp on my line and low-and-behold it was still locked. I undid it and the blood started flowing and then she says "There, got it" I just smiled inside. Didnt fall back asleep though :(
Friday, May 28, 2010
Fuck You Cancer
This comes from a dark place inside me but nonetheless should be expressed.
They have told me that my journey with cancer is one of spiritual growth and process. Ultimately to learn from my experiences and then help others? the world? Fuck the world. Sure, maybe I will become enlightenened and go around like the dalai lama sounding like a broken record on compassion and love, while everyone else in the world lives their normal lives, with normal worries, and normal problems.
The world can save itself. I want a nice little family, a nice home, a fucking car in the driveway and a cottage for getaways. I dont want to constantly be worrying about some little fucking explosion of dumbass cells invading my body and mucking up everything. What kind of dice did I fucking roll.
They say our souls choose what is to happen in our time here for greatest soul-growth. Boy, did I sign up for the wrong fucking course. A course where you are given this awesome physical body and you get to have it raped again and again by drugs so that you end up old, bald, and withered - but still smiling! And they tell us to "trust" in the process....might as well trust a pedophile with your kid. Trust is earned. I trusted the process and then the rug got pulled out from under me. Two times. Maybe I shouldn't trust you afterall, you bitch.
All in all, fuck enlightenment, fuck godliness, and fuck the process. Is it really growth if you're pretty much acting out of survival fear? "If i dont do this, or act like this, or behave like this YOU DIE" sounds like a pretty shitty ass deal to me. God fucking damnit I really need to break something. I better hurry before I fucking relapse again and again and again and die choking on chemo.
-------------------------------------
p.s. So writing that was really hard to do and I feel horrible inside right now. The truth is it is those beliefs that have made me so resilient and optimistic in the face of this disease. And the Dalai Lama is my hero.
They have told me that my journey with cancer is one of spiritual growth and process. Ultimately to learn from my experiences and then help others? the world? Fuck the world. Sure, maybe I will become enlightenened and go around like the dalai lama sounding like a broken record on compassion and love, while everyone else in the world lives their normal lives, with normal worries, and normal problems.
The world can save itself. I want a nice little family, a nice home, a fucking car in the driveway and a cottage for getaways. I dont want to constantly be worrying about some little fucking explosion of dumbass cells invading my body and mucking up everything. What kind of dice did I fucking roll.
They say our souls choose what is to happen in our time here for greatest soul-growth. Boy, did I sign up for the wrong fucking course. A course where you are given this awesome physical body and you get to have it raped again and again by drugs so that you end up old, bald, and withered - but still smiling! And they tell us to "trust" in the process....might as well trust a pedophile with your kid. Trust is earned. I trusted the process and then the rug got pulled out from under me. Two times. Maybe I shouldn't trust you afterall, you bitch.
All in all, fuck enlightenment, fuck godliness, and fuck the process. Is it really growth if you're pretty much acting out of survival fear? "If i dont do this, or act like this, or behave like this YOU DIE" sounds like a pretty shitty ass deal to me. God fucking damnit I really need to break something. I better hurry before I fucking relapse again and again and again and die choking on chemo.
-------------------------------------
p.s. So writing that was really hard to do and I feel horrible inside right now. The truth is it is those beliefs that have made me so resilient and optimistic in the face of this disease. And the Dalai Lama is my hero.
Wednesday, May 26, 2010
The weather gets hot and so do I...
Went out on a day pass to spend Victoria day with the family. Overall it was pretty awesome even though at that point I was still bloated beyond belief. Eating good and hearty BBQ meats when you're that backed up really didn't work and I spent much of the evening just lying on a bed farting. No but really it was a lot of fun. I was really exhausted by the end of it all though, and I am fairly sure that is where I may have picked up a little bug.
When you're immune system is erased by chemotherapy, as in my case, it is very risky to catch something as it can run rampant in your system uncontrolled dealing lots of even permanent damage. To say the least it felt good to be back in the safe-haven of the hospital. The next day I did indeed have a fever and the medical mans went to work. Probably the most annoying side-effect of a fever too is the HUGE fatigue. You really feel entirely drained, like to the point where standing is the biggest challenge in the world.
But HEY WAIT, I forgot to mention that that morning my bowels did indeed finally open the gates and so much glory was had. Choirs of angels sang in my head as I released what was probably a football field length of backup sewage.
Apart from that though, mostly a pretty mundane day. I bugged a nurse and she offered to wheelchair me over to the indigo in the nextdoor hospital. What a cutie.
When you're immune system is erased by chemotherapy, as in my case, it is very risky to catch something as it can run rampant in your system uncontrolled dealing lots of even permanent damage. To say the least it felt good to be back in the safe-haven of the hospital. The next day I did indeed have a fever and the medical mans went to work. Probably the most annoying side-effect of a fever too is the HUGE fatigue. You really feel entirely drained, like to the point where standing is the biggest challenge in the world.
But HEY WAIT, I forgot to mention that that morning my bowels did indeed finally open the gates and so much glory was had. Choirs of angels sang in my head as I released what was probably a football field length of backup sewage.
Apart from that though, mostly a pretty mundane day. I bugged a nurse and she offered to wheelchair me over to the indigo in the nextdoor hospital. What a cutie.
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