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 16^th – 5 days from now), and then I’ll be getting a “power-port” on the 25^th, 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.