Saturday, June 21, 2008

Saturday, June 21, 2008: Ragnar is finished...

It's done. 180 miles of Utah have passed under my and my teammates feet. We did not sleep more than 40 minutes over the last two days, and finished in about 31 hours (I'll get the exact amount soon). It was hot, it was cold, it was painful, it was wonderful. I'll write a bunch more tomorrow about all the specifics.

Let this be said though: If you do not push your limits, you never learn how much you can do.

The people that I met during this relay, the stories that I heard, the scenery that I passed by. If you get a chance to do one of these runs, do it. You (and your sore, sore legs) will always remember it.

Now that I've drunk my alcohol and eaten my fill, I'm going to sleep like the dead, because tomorrow morning I won't have all these nice endorphins anymore.

Thursday, June 19, 2008

Notes: Evening of Thurs June 19th

It's 11 pm. I'm in Logan, and tomorrow mornng I'll start running the Wasatch Back Relay. I'm excited, nervous, and already looking forward to seeing my son at the finish line. I know it won't push me as hard as the marathon's did, but I know that I will be pushing myself toward the end of it, and I'm looking forward to finding out how I do against that challenge. I can't help but feel like this is the end of something - it is the end of a goal I have had for so long (only 5 months, but until this year, I didn't realize how long 5 months could be). It's the culmination of my stubbornness. And so I am already thinking of what to try next...marathon before surgery? Ironman at the beginning of next year? If I don't have something to strive for, I will become nothing but the sickness. This is the only way to rise above. The only way to stake out something that is mine beyond it. To show that it cannot stop me.

Fuck Cancer. Bring on the run.

Thursday, June 12, 2008

Thursday, June 12, 2008: 8 days till Ragnar, 3 days till Chemo, Tomorrows the TV interview

Not much to talk about today – most of my drama was work related. Spending more time looking at the colon cancer message boards – responding and posting – getting a feel for the community (mostly women), and reading up on other people’s responses to Folfox. The thing I’ve taken away is not to think that the side-effects will disappear when they pull the plug on the 3rd day of each round. They say to prepare for many days of fun. This may make Ragnar quite the challenge.

We got Matan’s glasses today, and he is looking great. He’s excited to wear them, and after I thought a bit about my initial rage at his having to wear them, I think I’ve been able to pinpoint why a little better:

  1. As I said before, I didn’t like seeing his body betray him so early on. It feels like mine has, and I mourn the loss of my perfect little boy.
  2. It was another thing – I just wanted one time to not get bad news when we visited a doctor.
  3. I think all of us want our children to stay the same (Note: this thought could come from the fact that I’m currently reading Peter Pan.). This is an incredibly destructive impulse, and one that none of us really want if we think about it for very long, but nonetheless, I think we don’t want to see them change drastically – we have a tough time accepting it when they do (think teenagers), and we always tend to see them as younger than they really are. I was used to Matan w/out glasses, and I was sad to see him change so quickly without my permission.

As a side note, Siena loves splashing in the bath. She spent 15 minutes straight splashing and going from one end of the tub to the other, laughing and splashing. I love seeing pure, unadulterated joy.

So much for the sweet – tomorrow I get up early, fire two people, then get ready for my interview. What a day it’s going to be…

Wednesday, June 11, 2008

Wednesday June 11th - Quote/Song of the day

“You’re the fighter, you got the fire, the spirit of the warrior, the champion’s heart. You fight for your life, because a fighter never quits, you make the most of it, because a quitter never wins.” – Warrior's Code - Dropkick Murphys

Saturday, February 09, 2008: Day 22, Post-diagnosis 2 days to chemo/radiation

After I wrote that last line last night, I called and spoke with Guido (since I didn’t call him on, or even relatively near, his birthday – he’s 20 now!). It was great to talk with him, even if only for a short while. When I talked with him again this morning, I found out he hadn’t gotten in until 4:30 am, and there I was, calling him at about 7 am. Well, at least I’m still keeping him on his toes. He sounds good, and I was able to get him to laugh at some of my new and improved “ass-quotes.” It makes me feel better when I hear him laugh. Then I know he’s not holding stuff in. It looks like he’s coming home to visit on the 20th, and I am happier than I can say at the thought of seeing him. I thought it was going to be ages before I got to see him, and I was trying to figure out how I could pay for the ticket to go see him before my surgery, so this is really wonderful.

Today I woke up at 5:30 am and drove up to Logan for backcountry snowboarding with Lev and a couple of his friends.

When I go snowboarding with Lev, I’m always pushing myself extremely hard just to keep up. I always learn more when I’m boarding with him, I always enjoy it because I’m always pushing myself to the extreme. I love being there on the brink – you don’t have the chance to think about anything else – you are forced to be in the moment constantly.

Some of my memories of the day:

Just trying to keep up – the exhilaration of dropping down the cliffs, the speed and the wind, the feeling of riding deep powder, and the burn in my legs.

Seeing the moose, the elk, the deer, all up the canyon. Lev’s eyes picking them out as we drive up, as we board by. He’s always had amazing eyes for picking out the wildlife in the trees.

Reminiscing with him about hiking up the canyon together as kids. All the weekends we spent charging through the forests together, spelunking, or hopping from rock to rock downriver. These are some of my best memories from childhood.

Lev telling a story about a sleeping deer that was a little too close to the road, and was surprised by a snowtruck shoveling the road. It was completely covered by the spray from the truck. Lev’s remark to the deer: “that’s not a good place to sleep.”

Lev’s other quote of the day: “don’t live in fear or perceived fear.” I’m going to try hard to live up to this one, but it’s not easy right now.

Walking with his friends, thumbing for rides on the road off of the backside of Beaver Mtn., and deciding that if we were stopped by the cops, we’d use my cancer as an out.

Lev’s friend who’s brother has testicular cancer at 22, and won’t talk to anyone about it.

I have a constant feeling that I’m doing things for the last time. I don’t know if I’m just being overly dramatic, or if this is a true feeling. It is a false funeral of my pre-chemo self. I don’t know what to expect, I don’t know how bad it’s going to be. I just know that things will change for me forever after this.

I read the poems (both Auden’s and Haldane’s) to my parents today – it was tough reading the cancer poems to them – we were all crying, but it was good. It’s a release, and its part of the process. My mom cooked me copious amounts of food today – I think that’s part of the process too. We all show our love in the ways we know. Lev takes me to his temple, to the hallways of our memory, my mother cares for me and feeds me.

I spent some time talking with our neighbor – Mr. Haslam, the principal of my middle school. Since I left middle school, he has always been a kind man – he takes meticulous care of his lawn, always brings over food from his garden, and always has nice things to say. Last year his wife passed away, and his pain is written clearly on his face and in his movements. He took time to talk with me – to ask about my family, and he meant it all – not one false word of comfort. There we stood – the principal and the student – a gulf of years and a nearness of tragedy. How much sadness there is in the world sometimes. How much of a gulf between every single one of us, how thin the bridges we build between, and yet how much they can mean.

Wednesday, June 11, 2008: 9 Days till Ragnar!

Wow. Today was one for the record books – here goes…

So I’d planned to have a great practical joke with the medical student today, but they never asked which medications I’m on, so I couldn’t fit in Valtrex (for herpes), Cialis (if you don’t know this one, you have never watched more than 10 seconds of TV), and amoxine (used in kicking heroin). I guess this joke wiill have to wait until the next meeting…it’s always nice to have something in store I guess.

So I met first with soon to be Dr. Hill. He’s in his fourth year of residency – he’s going to be a cardiologist. He did a pretty good job – he was pretty confident and comfortable – I threw him a little when he said he was going to check my lymph nodes and I started to unbutton my pants, telling him that they’d removed most of them in the surgery but he was welcome to look. He said “No, no, that’s why I’m going into cardiology – I’ll just check the ones in your armpits and neck.” He then proceeded to talk to me about how weird it must feel to have someone feeling your armpits – I told him that was nothing…Really….if only all my exams could be this easy.

Soon after, Dr. Weis came in and we got down to brass tacks about the chemo regimen what I would be taking and why. For those interested in the facts, here they are:

I’m on a Folfox regimen which means I’ll be getting 5-FU (flouroracil – the same kind I got before), Oxaliplatin & Leukovorin with Magnesium and Calcium thrown in to try and counteract some of the side-effects.

I’ll be getting a 4-hour infusion of Oxaliplatin, Magnesium, Calcium, Leukovorin, and probably some 5-FU every other Monday followed by 48 hours of continuous 5-FU.

I’ll be getting another picc line in for the first round (starting Monday the 16th – 5 days from now), and then I’ll be getting a “power-port” on the 25th, I think. This will be installed in my chest, and will allow them to pump the chemo directly into my heart, with the additional ability to pump dye in when they do CT scans. Unfortunately, it doesn’t appear that this will give me super-powers or allow me to plug my I-pod into it for recharging. I sense a possible market here for apple…designer ports. Ok…wait for the horrible cancer pun…wait for it…it’s a growth market. Hahahahahaahaha! Definitely not enough good bad cancer puns around. I’m just adding to the genre.

Ok, back to the facts. The biggest side effects that I’m worried about (aside from the regulars of nausea, vomiting, etc… are going to be the neuropathy. Neuropathy is essentially the deterioration of peripheral nerves, and is one of the hallmarks of Oxaliplatin. It generally kills off the nerves in the hands and feet, causing wonderful problems like the lack of ability to button your shirts or walk without falling over. On the good side, they generally heal, and once I stop taking the chemo, they will generally start healing immediately. On the bad side, Dr. Weis said they often take up to and many times more than 4 years to heal. I’m ok with it now – I won’t be once it starts kicking in, but I’m ok now – I figure it’s a small price to pay to be around for a while longer.

The other part of neuropathy that generally presents with this sort of chemo is cold-trigger issues. This means that cold will cause me pain – so no ice-cream, no slurpees, maybe even no getting into the fridge for me this summer. One guy I talked to that had this said that his throat immediately closed up when he went into one of the walk-in fridges at work – he had to leave before he suffocated. Again…wheee! At least I’m doing this in the middle of the damn summer. If it was winter you’d find me dead up on the mountain, still strapped to my board.

So those are the basic facts. Some other interesting things I learned at the appointment and in watching a video on the Magnesium and Calcium additives.

Evidently the study that says the Mg and Ca don’t adversely affect the efficacy of the chemo (ie. Don’t make the chemo not work) just came out 2 weeks ago. Previous to the study, it was thought that though they sometimes mediate the pain &/or neuropathy, they kill the efficacy of the treatment. This study suggests otherwise.

They figure out your chemo based on body surface area.

During my last round of chemo I was getting an average of 200 somethings of chemo (my notes are not specific enough) per M2 of surface area of my body. During the infusion I will be getting about 1200 per M2. That’s going to be fun. Dr. Weis said this will make the first few days after infusion suck, but over the whole 2 weeks it’s relatively the same level as the original chemo.

I’ll be going to invasive radiation for the power-port. What a name for a lab. “Invasive radiation”. How can you not look forward to going there? Almost as good as the “I’m going to hit you with sharp metal objects” lab. They really ought to get a PR person to help them with the names…

Avastin is another name for bevucizumab, and evidently it doesn’t work on adjuvant therapy, only on metastatic therapy. Wow. I sound smart.

(FYI - Avastin is used in Folfuri, another regimen that many colorectal cancer patients are put on. Adjuvant therapy is post-operative chemotherapy. Metastatic therapy is pre-operative chemotherapy. Oooooh. I really am smart.)

A couple of things from the video:

TTF – stand for Time to treatment failure (in the reasons of treatment failure, after the “patient discontinued” and “adverse affects” was “or death”) I love the little sobering moments.

PFS – Progression Free Survival. Ohhh. I want PFS so badly…

NTE – Neurotoxicity Events. Ohhh. I don’t want those at all, especially the severe ones (patient can’t swallow, breath, drink, etc…although if you can’t breath, are you really worried about drinking?)

PNQ – Patient Neurotoxicity Questionnaire. Yea! More paperwork!

Last but not least, here is the full listing of adverse effects for my chemo along with some explanations I added in:

Neutropenia (Decrease in white blood cells in the neutrophils)

Leukopenia (White blood cell count abnormally low due to lack of production)

Thrombocytopenia (Persistent decrease in platelets)

Nausea (I don’t feel so good)

Vomiting (Blargh!)

Fatigue (Snore)

Diarrhea (Urgh!)

Dehydration (Primarly due to the previous issue and complicated by the immense amounts of alcohol you are drinking to deal with everything else. Note: the alcohol also adds to the nausea and vomiting issues.)

Hypertension (High blood pressure from worrying about everything else on this list)

Small intenstinal obstruction (okay, how the fuck is chemo going to do this? Do I want to know?)

Hyperglycemia (Excess sugar in the blood….sweeeeet)

Hand-foot syndrome (Sores and pain in and on the hands and feet)

Myelosuppression (Suppression of the bone marrow’s production of blood cells and platelets)

Neuropathy (We already discussed this – an abnormal degenerative state of the nervous system)

Cold-trigger issues (Aaaagh! You keep that ice cube away from me!)

Muscle cramps (Did they really have to put that in? If you’ve made it through all the rest, I hardly think a charley horse is going to do you in…)

On the bright side of things:

I will be featured on the local news ABC 4 here in Utah wants to interview the cancer guy that’s running the Ragnar Relay. I’m meeting a guy (Dana Greene) on Friday to do the interview and to film some “cancer guy running in the mountains” footage. I told them to wait a few days and they could get me running with my chemo bag, but I guess they need to get it done right away.

I told them we should film up behind the Huntsman Cancer Institute – I said it would be rich in symbolism. Ever the English major, huh?

I only had a short time to run today – 20 minutes. However, I made it over 2 miles in that time. Boo-yah! I’m getting back to my time. Bring on Ragnar. I’ll run my legs of the run, I’ll run everyone else’s legs. I’ll run the whole damn thing!

Ok, I’ve been writing for over an hour. Time to go to bed. It’s almost midnight.

Tuesday, June 10, 2008

Friday, February 08, 2008: Day 21-Post-diagnosis

Not much to talk about today. Caught between my public persona and my fears on this. As the reality of the radiation and the chemo get closer, I find myself more nervous and wishing I could put it off longer, or that it would begin already. I guess the obvious truth is that there is no way around it, just straight through the middle.

Today the word spread a little further at work, and I’m having more people come up and hesitantly tell me that they are sad to hear about this, or they are grateful that I asked how they were doing when I was already going through this. I’m not sure how to handle these things. Do people assume that if you are going through something you suddenly stop caring about others? Or, put more cynically, don’t they realize that thinking about their problems just may be a little easier than thinking about your own?

Anyway, I have a headache, I’m excited to go back-country boarding tomorrow with Lev, and my brand-spankin new i-pod touch should come in the mail in the next few days. It’ll be nice to have a soundtrack to my life again. I’ll have to come up with some cancer mixes…