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 :(

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.

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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.

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.

Wow, what crazy days...

Yesterday around 10pm my neighbour in the room just next to mine passed away. I guess it is to be expected in a cancer hospital that eventually patients will succumb to the disease or more likely first to the "treatment". There were a lot of people here; friends, relatives, direct family...all kind of quietly waiting for this man, who had turned for the worse, to finally take his leave of this world.

I don't really know why but I found it interesting that only once the news actually got out that he had stopped breathing did people finally react. Now people screamed, now people moaned, now people could freely grieve. It was all quite surreal and bizarre. It did bring back feelings of my own mom's passing but they were brief. I guess people try to be polite and hope for the best until the very end. I donno though, it all seemed really awkward as everyone just kind of lingered...waited...

A kindly nurse came in to make sure I was doing ok with all the grieving going on around me. I openly access my grief when it calls to me so I am quite ok with the powerful emotion. It is still quite shocking on your soul, you kind of want to just safely calm and pet your soul and make sure its not about to leave on you too! I had a much more intense experience like this when someone 2 doors down was having a cardiac arrest...nurses were yelling, people running, slight panic in the air trying to be restrained by professionalism. Over the loud speaker "CODE BLUE FLOOR 14 SECTION A ROOM 114. I could feel my soul jumping around in my body...had to calm it for sure...shit was tense!

Anyway, the night eventually quieted down, so I went to sleep and sent that man's soul good vibes on his future journeys.

The next day was one of comedy, really. All the guests had cleared up from the previous night and I got my chairs back in my room (had to loan them out to campers, you know). I am at 10 days post treatment and I have barely had a bowel movement the entire time. It was starting to really nag at me so I told the nurse to stop pussyfooting around with stool-softners and give me the big guns...But before they could they had to work their way up through a few more shitty laxatives. They say shit like drink lots of water and walk a lot....I decided to have a dance party in my room to get my intestines in the mood to MOVE...that was a lot of fun, i probably looked like a complete idiot bouncing around my room trying to get my gut to loosen up but I had a lot of fun.

I had a bunch of visitors over too and I was really looking forward to having some awesome movie-esque shitfest with a bunch of relatives over or something...a good story for later in life BUT NO...I STILL HAVNT HAD A BM. They hitting me with the big guns now....hopefully this shit does something cuz seriously...i feel like an african baby with a huge stomach and its really ruining my mood.

Nuff for now
-Nic

You are a Chimaera he says...An update from my journey with dis-ease.

Key Terms:
AML - Acute Myeloid Leukemia, cancer of HB

ALL - Acute Lymphoblastic Leukemia, cancer of LKC

Leukocytes (LKC) - white blood cells, part of the immune system.

Neutrophiles (NeutA) - First line of defense in the blood, similar to white blood cells

Hemoglobin (HB) - Red blood cells, carry oxygen

Stem Cells - produce blood cells in bone marrow

BMT - Bone Marrow Transplant

Graft vs Host (GVH) - donor cells or organ not getting along with the host body.

Cyclosporin - A transplant drug used to suppress the immune system and to prevent graft vs host.


I guess you could say I have what appears to be a very aggressive cancer. A horrible flu in Oct 2008 triggered the cancer of my hemoglobin (known as AML). It pretty much just replaces your oxygen-carrying healthy cells with dumbass cells that flood the system and don't know what to do so you feel really god damn tired. This was the dominant cancer but interestingly enough I showed signs of a second cancer, ALL, indicated by a higher white count than normal. They treated me for AML because that was the bigger threat and that was that.

Then, 6 months later, in July, we had ALL take the spotlight. Dealing with news of a relapse is probably the worst thing you can experience in this life. They put me on a 2 year standard protocol (wtf, right?) for ALL then decided to cut that short and just put me into a Bone Marrow Transplant. The most intense chemos were used, full body radiation, and no young nurses on that ward. It all went really smoothly for me which was nice and I got out of that mess in 3 weeks.

The hardest part of the BMT is the following year. You deal with immense fatigue as your new donated immune system is like "WTF? where am I" and then starts attacking what appears to it as "foreign" organs and cells. This is called GVH and the amount of GVH varies from person to person. Me and my bro were a very good match so I barely had any. Now here is where I get angry. I did finally start getting some GVH of the liver - that is, David's cells were attacking my liver and causing a little inflammation. They shut down my brand new cancer-fighting immune system by increasing the cyclosporin dosage by a huge amount.

Just a quick note on doctors here: My overseeing leukemia doctor is Dr. Minden. You will not find a better doctor and he is the nicest guy. He is head of Leukemia at PMH, a UofT professor, a surgeon, among many other things and he responds to text messages! I got taken away from Minden and transferred to the BMT team - what a bunch of clowns. No I'm kidding they have some really good doctors I just never really met any of them. On my visits I usually got to see nurse practitioners and young less-experienced doctors. When I first got the rundown of their team they described it as my health being under the care of a "collective mind" as if their team worked together on everything. I never once got that feeling. It seemed that my case, my health, my life was at the whim of one maybe two not so experienced people.

Five months post transplant cancer cells reappear. I see the bloodcounts before the doctor gets to my room and I am a huge wreck when he enters. I told him how miserable and absurd their system is and that they overreacted to a little liver problem. The kind doctor tells me some shit about GVH but I'm too destroyed to even listen. He ends by saying, "it doesnt look good". What a douche. I kicked a stool into the wall and crushed a styrofoam cup in a fit of rage. (Ok yea Im new to teh whole anger thing ok?)

Couple days go by and I'm like the emo anakin from episode three. Eyes bloodshot, nothing but rage as I look around at all the healthy people around me. I think I really scared the crap out of my sister which makes me so sad. I was in the pits of despair and part of me liked it. My dad and step mom could feel the heat pulsing off of me. They took me to scream at a lake - that helped.

I said things like "I would rather die in my sleep now from the cancer than choke on chemo for the rest of my days". My faith, my beliefs were all crushed I felt a victim of the random cruelty of nature. Worst of all I thought they were just going to put me right back on that 2 year protocol for ALL. 2 years of chemo, can you believe that?

Then it happened. I got taken back to Doctor Minden's care. A nurse told me today that he NEVER gives up on the young ones. All was right in the world. I came into the hospital, my room already prepared, and I waited for the meeting. Friendly faces from the past stop by to say hi but im still angry faced. Minden walks in and the first thing he asks is do I know what a Chimera is? "It's a 2-headed dragon" I say and he says "yes, that is what you are right now". I have my immune system, I have my brothers immune system, and he then tells me that of course the most likely cause for this relapse was indeed the high dose of cyclosporin the BMT had me on.

Dr. Minden has personally designed a chemo cocktail custom tailored to my needs. It will treat both AML and ALL and not involve steroids (yessssss). The goal right now is just to get me back into remission, which hasnt been a problem, and then to work closely with me and my cells to see what exactly is going on. The goal after remission will be to actually trigger and make use of my double-headed immune system to defend my body against cancer! no chemo, no immuno-suppressants, no bullshit backwards approaches. This may possibly also involve recieving some donated leukocytes from dave.

This is what I have always wanted, so I was very happy to hear this plan, and it allowed me to switch gears from that miserable nick to the optimistic nick. I believe I got to already see my immune system in action. I underwent a huge emotional boost in the support from friends which in turn triggered a massive and fast moving immune response in my body. It manifested as a very intense but brief fever where I could almost hear the cancer cells exploding haha. Sure enough the next day when I looked at the blood counts, the blasts were no where near as high as they should have been. I am still in awe when I think about it. One of my favorite books states that, “All of us have cancer cells in our body but only some of us will develop cancer”.

This really wouldn't be a proper nick writing without some cooky spiritual stuff to add in. It is said that we choose our life challenges before we are born. We choose them because we are ready to deal with them on a soul-level. With that approach this health crises or catastrophy really becomes more of a noble endeavor. All the odds are against me, my cancer is aggressive, I seem to be pretty fucked, yet I feel really good about all of it, especially this new fight. I could die from the chemo they give me tomorrow but truthfully thats not what it feels like. It feels like I am here to beat this. It feels like this will be a final round and it feels like it's time to see what this Chimera can do.