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Pesfu Fighting

Oral cancer will not win. Love always will.

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Sometimes this is hard.

I'm home.

They wanted to keep me a few extra days and through the weekend, but I was like: "Get me outta here."  But even being discharged is especially difficult in 5th Ring of Hell, Middle of Nowhere, CA.  The discharge coordinator, Errol, had some difficulty in understanding how pharmacies work.  I'm not kidding.  So the answer Errol presented was for me to stay in the hospital.  I was like, (said ala Sarah Bernhardt) "If I must suffer, let me suffer at home."  So Shep came and got me in his Prius and we went home.

The next morning I saw Dr. Kokot...and briefly, Janet, or Dr. Bertleson, if you must.

Dr. Kokot was in a good mood and provided me with a cup of water.  Ahhhhhhhhh!  You will never know such joy.  I mean, if Ryan Gosling himself made sweet, sweet, tender love to you, I would challenge my cup of water against that experience as the most joyful to be known.  It was perfecti...Owwwwww!  (That's when Dr. Kokot pulled the bandage off my healing neck incision during my basking in the joyful experience of my cup of water--UNAWARES!)  This is where I reiterate my love/hate relationship with my very talented surgeon.  He's always sneaking up on me.  He and I will have to have a talk about this before we are finished with one another.

A tangent:  Doctors should remember that I am the patient that at 19 "accidentally" almost left my hand surgeon, Dr. Flannery, unable to bear children when he adjusted my external fixator for the first time--telling me that at most I would feel a little pressure.  Ha!  It felt like tiny oompa loompas were moving my ulna and radius around...which is what was happening.  A little pressure.  (This is still a tender spot for me.)  Dr. Kokot, be warned, Monty's bunnykick reflex is sometimes engaged when she feels unexpected pain.

This day--the Dr. Kokot day--was also the day I found out that they were recommending radiation AND CHEMO.  Damn.  Really?  Can't I just do one of the painful, life-altering, potential deforming albeit lifesaving procedures and not all three?  I knew they were gonna want radiation, which personally I thought was always a walk in the park.  I mean, movies are no help.  William Hurt's teeth never fell out in The Doctor.  Which can happen.  My jaw could just crumble right away.  Man, come on!  And I haven't even gone on the scary websites.  This is something the DOCTORS, MY DOCTORS, have said can happen.  Oh monsieurs, you make this lifesaving treatment sound so appealing.  As if saving the life at any cost would be the only goal.  

This is when I simmer down.  I get scared.  I begin to think of how hellish this all is.  How ghoulish I must seem.  (I mean, I look like a bullfrog.  Seriously, my neck is swollen and distended to almost epic proportions where my lymph nodes were removed and the flap with its blood supply--taken from my left arm, another ghoulish site--were placed.)  But then I remember...I'm alive.  I am alive.  I would give anything to have my mother back.  Aunt Wanda.  Jennie.

Which has made this week especially hard.  Jennie died a year ago.  So I've been thinking a great deal about her and the fact that she never spoke about her illness.  She always wanted to speak of other things.  I get that.  You're sick, you don't want to be reminded that you are the "sick girl."  And we had so much more to speak of.  But we had moments, times where it would all pour out.  She lived everyday.  Fully.  But sometimes the pain, the sadness, the fact that you are not who you once were and maybe you might not have as long as you thought you would, it overwhelms, it dwarfs you and all you can do is sit there and cry. 

I am so thankful I was there to hold my friend in those moments.  I am so pained by the fact was not there on her last day.  I would have wanted nothing more but to envelop her in my arms and hold her and tell her how much I loved her and how much she has made my life beautiful.  I miss my sister.  When I am out with a group of friends and I'm laughing and having a good time, it tugs on me that one is missing.  One I can't call.  I can't hold.  And then I think of me now.

I had a moment, when I was told I had cancer, when I considered doing nothing.  I have no children.  My mother and aunt are no longer living.  What would be the harm if this was my out.  The only regret I would harbor is the fact that I haven't done or said everything artistically I wanted to do or say and that would be a pity not to fulfill my promise, but in terms of heartache, maybe it would be easier.  Then I remember Jennie.  Jennie would tell me to not stop, not to give up one second and to do what I have to do to live as long and fully as possible.  And I think of the friends I have who love me.  The family I have chosen who have loved me as much as any family could--I don't want to miss any of them.  I don't want them to grieve as I do now, if I can help it.  And to ensure I carried out these pacts--to endure horrors of lifesaving treatments--my cancer came with terrible pain, so I'm one-third in with the long road laid open before me.

Right now, for the time being, I look like a bullfrog with a deformed arm and who knows what is happening inside my mouth (feels like an oversized eel has attached himself to the left side of my tongue and I can't seem to shake him--which is a good thing, because that's my faux tongue/flap but still makes for real trouble doing anything you need a tongue for, folks!).  It ain't pretty.  And I'm losing a good deal of muscle because I'm still mastering the art of deglutition and it's easy to forget to throw another bolus of liquidy nutrition in the ol' peg tube.  BUT I'm alive and I'm here with you and that makes me feel like I might be on the right road.

That and Jimmy is here.

Jim and Vanessa have been here this week and it's been lovely.  I wish I could find a way to keep them.  (I'm up for ideas if you got'em--direct all ideas to:

Ahh, a knock on my door.  It's Jimmy.  I'm gonna get him to help me color my hair.  (Folks, priorities because there is ghoulish and then there is just damn awful with an appearance of lazy so we must keep up the roots.)  So Jimmy's gonna help me color my hair--what could possibly got awry?

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