Tuesday, May 18, 2010

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.

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