Tuesday, October 30, 2012

320 little pills

The moon is full and my mood well it is pretty dark. 320 is the number of xeloda pills I took. 8 weeks roughly was the duration of my latest chemotherapy. 56 days of wondering is that a side effect or is it me? 100 little black spots appeared on my skin, melanin pigmentation (known side effect). 2 times a day I had to figure out a story to get myself to swallow these pills. 500 the number stamped on each side of these pink little pills, xeloda is on the other, bio hazard that is stamped all over the bottle. 1000 or more is the number of herbal supplements, rubs, oils, tinctures that I have introduced to my body since my metastatic diagnosis in February 2012. 6 cycles of etopiside/sisplatin infusion. 6 PET scans. No matter what the numbers are or how I put them together, I have yet to find a drug that my cancer  completely responds to. All these numbers add up to a sea of fucking tears that I have a hard time dealing with. 

My latest PET scan showed node growth combined with additional nodes in my abdomen.  That of course is a bummer, no cake should go un-iced though, so the additional bad news is that my stomach also shows uptake as well.  Now I would use the F word again in this instance but once per post is probably enough.  The good news is I can stop taking the pills I was so thoughtfully counting in the 1st paragraph.  The bad news is, they did not work.  We are back to the cancer drawing board with more nodes, a sore swollen neck, and now something unknown in my stomach.  Well when digestion turns south (tee hee) you are referred to a gastroenterologist. This will be a first for me. She does not examine me, I don't really care. She tells me she will stick a scope down my throat, into my stomach, look around and take a biopsy.  Oh yeah, the important part is I need a driver and will probably needs someone to help with the kids, I will be in NO condition to drive.  She tells me this like people do it all the time.  Driving is the least of my worries what about this thing in my stomach?  She won't know until she takes a gander, she re-assures me that PET scans have been wrong. However if it is breast cancer in my stomach...well that would be very bad.  She makes some remark about the quality of my genetic make-up and for some reason I just shrug it off.  I don't even care if I get to know one more doctor is this team of professionals that is trying to get me well.  My Rolodex of nurses and doctors is full to the brim.  I am to a point where I would stick a scope down my own throat to see what is going on in my stomach, rather then fill out another medical history page. That of course would be completely impossible due to my crazy gag reflex and general state of distress when it comes to anything medical...sometimes bloggers can be a little dramatic, I think they call it literary license.

So tomorrow will be my 1st EGD.  Totally a messed up way to spend Halloween.  Thankfully it is my ex's holiday this year, so I don't have to worry about the boys.  I did ask my new Dr. if she planned on dressing up.  Thankfully she said no, but the nurses might.  Great nothing like twilight drugs with people in costume. Are they trying to ensure a bad trip? It sounds pretty straight forward, no eating after midnight.  Check in at 7:00, procedure at 8:00, I should be on my way home by 9:00.  That will be the time where I watch horrible daytime TV and ponder the results of my latest procedure.  She said she will probably know if it is cancer right away.  They will take a tissue sample to be sure.  Another good to know fact, I guess.  Since the call, and the visit with Dr. Gastro my stomach has not stopped hurting.  To make matters worse a dear friend came down with appendicitis this weekend.  The hypochondriac in me is pretty sure, if it is not an ulcer or cancer then I must have appendicitis.

I am frustrated and scared.  It feels as if I have been running around this cancer wheel.  Time seems to pass, and not much changes. 

The only time I feel "normal" is when I am on my bike. For those few hours a week, I am not sick, I don't have cancer, and I am hopelessly in the moment.  This life is certainly a struggle.  Most days I feel like anyone else, except for result days.  Those days stop me, remind me, hurt me, compel me to look at cancer in my life.  I don't do well in this space.  I will be returning to the oncology office in the next few weeks for a new infusion therapy.  My new drug of choice will be gemcidabine.  Needles and nurses will be in my world on a regular basis again.  Cancer seems to want my attention, it is however a small part of me, and I resist at every turn to make cancer the focus of my life.

So light a candle in your jack-o-lantern, and send some light my way.

Drink Water and Breathe


  1. Keeping good thoughts for you as always, and for all who love you. I know this is hard but you aren't done yet.

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  3. Sarah Lynn Rouette, April 21st, 1974 to January 7th, 2013

    I can’t believe you’re gone, a month ago, you had a close call and by the time I got to your side, you were already bulling people around about the proper texture of your coconut jello and the feng shui of the Christmas decorations in your living room, 6 months ago, you were risking your life on that damn mountain bike of yours flying down steep mountain slopes and 2 years, 9 months and 21 days ago you went into see a doctor for a excisional biopsy on her right breast and woke to a world that had cancer in it. But this blog post isn’t about that disgusting disease, it’s a selfish post about me and her and choices we made in life.

    Sarah was younger, other than her shoe collection, she was a minimalist. She was a stubborn, smart, pig headed, fun and had great dreams, she would focus on a goal and it was hers. She made life look easy. She saved up her money, lived in a shack and took huge elaborate trips to far distant lands with a pack on her back but she always came back to Prescott to roost. Me, I ran away like I was being chased by wild dogs and then spent the next 2 decades coming back for sips from that well. I became a Gypsy, joined a band of roaming sailors who pulled into home port on rare occasions and somehow in the middle of that wildness I had got married and had a kid. Sarah being Sarah and never one to beat around a bush, called me a breeder (with great distain) and that I was making a foolish mistake, alright, I admit, she did call that one sort of right.

    Years go by, me traveling the world and wearing out my soles while she stayed in Prescott and gathered a community around her.

    She did finally settle down and had two beautiful children that she could call her own and somehow became a super momma involved in all sort of outlandish mommy activities. Most of the mom’s I see are military wives or military members and she out momma’ed most of them. For those of you who do not know Sarah, it’s hard to explain the gaggle of momma friends she had around. These girls were her life and she was theirs in ways that I can’t pretend to understand.

    If my sister and I have one thing in common, we can pull people together when we put a mind to it. By this time, I had gathered my own community of nerds and oddballs that was connected by electrons and ether and scattered across vast gulfs.

    The point I’m getting to is that even though I’m torn up and weepy right now and even though I’m her brother. It’s been two decades since I’ve made a real impact on Sarah’s life and even then, I don’t’ think I shifted it an inch out of the path she made, over the last few years, she’s formed this commune of friends that have been her strength and armor, she was a part of Prescott, not meaning that she lived in it or that she was a Prescott girl. She was as much of the town as Whiskey Row. I’ve only touched her life briefly, a dab here and a dab there, dumb little things like setting up her blog and attempting to pull her out of the dark ages because even though she had a huge brain, she was still at heart, a total Luddite and thought of technology as a passing fad that the rest of us would get over.

    We were always off on our own private holy mission that seemed so important at that moment. If there is anything in life that I regret, I regret that we did not have a proper brother/sister relationship, I regret rushing off those moments when I could have taken more time to take in her amazing life that she had built like a castle around herself and I regret not being there for you when you needed me. This armor of hers, it’s just not hers, it’s the people she’s drawn to herself and right now, it’s torn asunder and I’m sorry, I’m just a dumb boy and don’t have a clue on how to mend it.

    My heart aches, I love you sis and miss you terribly.

    Sean, your big brother

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