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.
Saturday, June 21, 2008
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.
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:
- 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.
- It was another thing – I just wanted one time to not get bad news when we visited a doctor.
- 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,
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
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
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
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…Thursday, February 07, 2008 - Day 20 - Post-diagnosis
Today I went and got my pre-chemo teeth cleaning. I’ve got to tell you, if you want to get a dentist appointment real quick, just tell them you’ve got cancer. They shut right up and schedule your appointment. Of course, when you get there, the assistant wants to hug you non-stop, and the dentist will spend the entire time telling you about how a foot of his colon was removed, and that you shouldn’t be embarrassed because those people that are working on your butt look at it just like a mechanic looks at a car (by the way, I don’t think this is quite as reassuring as he thinks it is – I’ve seen plenty of mechanics taking their frustrations out on car parts). They’re good people at the dentist office, and I know they mean well, but there is only so much I can take of strangers offering to help me out. A few days ago I lost it on someone and when they asked if there was anything they could do, I responded with “How about a cure for cancer?” The next one that asks me, I’ll just ask them to come pick up my kids at 8.
So I spoke with my Aunt Roz and Uncle Bear (Alan) today, and it was great. I think it helps a lot to hear others laugh at the cancer as well. As I’ve said before, I think that the only power our fears have is what we give them. We feed them on silence and respect. When we can laugh at them, when we can talk about them, we diminish their power over us.
Alan spoke of the prayer circles in
I got a call from the
So, gonna end today on a great note. I was searching for the entire poem that J.B.S. Haldane wrote entitled “Cancer’s a funny thing,” and I found it. It is great that a man that died in 1964 could write something that not only mirrors my own case so closely, but something that can make me feel so damn good. Here it is:
Cancer’s a Funny Thing
J. B. S. Haldane (1964)
I wish I had the voice of Homer
To sing of rectal carcinoma,
Which kills a lot more chaps, in fact,
Than were bumped off when
Yet, thanks to modern surgeon’s skills,
It can be killed before it kills
Upon a scientific basis
In nineteen out of twenty cases.
I noticed I was passing blood
(Only a few drops, not a flood).
So pausing on my homeward way
From Tallahassee to
I asked a doctor, now my friend,
To peer into my hinder end,
To prove or to disprove the rumour
That I had a malignant tumour.
They pumped in BaS04.
Till I could really stand no more,
And, when sufficient had been pressed in,
They photographed my large intestine,
In order to decide the issue
They next scraped out some bits of tissue.
(Before they did so, some good pal
Had knocked me out with pentothal,
Whose action is extremely quick,
And does not leave me feeling sick.)
The microscope returned the answer
That I had certainly got cancer,
So I was wheeled into the theatre
Where holes were made to make me better.
One set is in my perineurn
Where I can feel, but can’t yet see ‘em.
Another made me like a kipper
Or female prey of Jack the Ripper,
Through this incision, I don’t doubt,
The neoplasm was taken out,
Along with colon, and lymph nodes
Where cancer cells might find abodes.
A third much smaller hole is meant
To function as a ventral vent:
So now I am like two-faced Janus
The only* god who sees his anus.
I’ll swear, without the risk of perjury,
It was a snappy bit of surgery.
My rectum is a serious loss to me,
But I’ve a very neat colostomy,
And hope, as soon as I am able,
To make it keep a fixed time-table.
So do not wait for aches and pains
To have a surgeon mend your drains;
If he says “cancer” you’re a dunce
Unless you have it out at once,
For if you wait it’s sure to swell,
And may have progeny as well.
My final word, before I’m done,
Is “Cancer can be rather fun”.
Thanks to the nurses and Nye Bevan
The NHS is quite like heaven
Provided one confronts the tumour
With a sufficient sense of humour.
I know that cancer often kills,
But so do cars and sleeping pills;
And it can hurt one till one sweats,
So can bad teeth and unpaid debts.
A spot of laughter, I am sure,
Often accelerates one’s cure;
So let us patients do our bit
To help the surgeons make us fit
.
*In
With extra faces, up to four,
But both in Brahma and in Shiva
I own myself an unbeliever.
Wednesday, February 06, 2008: Day 19 - Post-diagnosis
Not going to write much today. Rode the bike 7.2 miles, ran 3.5 miles – set up a meeting with some physical trainers to work on my pre-surgery workout schedule – gotta tone up the stomach before they split it open! Working on the list of “quotes of the day” to write on my ass for the radiation techs. Getting input from all my trainers – now that they are finally all comfortable with it, they are coming up with some hilarious ones: “That’s not a fart, it’s my tumor talking,” and “Does this radiation make my butt look big?”
In more morbid/morose news, I came upon a piece of a poem today by W.H. Auden that is resonating with me:
“Cancer’s a funny thingNobody knows what the cause is, Though some pretend they do;It's like some hidden assassin Waiting to strike at you. Childless women get it. And men when they retire;It's as if there had to be some outlet For their foiled creative fire.” Most of it doesn’t come across very well to my ear – the rhyming is too blatant, and the language seems too simple, with the exception of the first line and the last two. I like the general sentiment of the first stanza, and the last two lines haunt me. I guess I feel some unresolved issues with not having artistic creativity be a regular part of my life. Who knows, maybe cancer is my kick in the ass to start writing… Can someone tell fate that she could just have written a note?
On a funny follow up to that poem, I was doing a search for it online to get the wording right, and I came across another poem entitled “Cancer’s a funny thing” by a scientist named J.B.S. Haldane – the first two lines of which are “I wish I had the voice of Homer/to sing of rectal carcinoma.” Oh hell yeah, now there is a poem for me!
Song of the day: Grey Cell green by Ned’s Atomic Dustbin
Quote from the song: “Desire. You’re telling me it’s in the trees, in the trees, it’s not it’s inside me. You’re telling me it’s on the ground, it’s all around. It’s not it’s inside me now.”
Tuesday, February 05, 2008: Day 18 - Post-diagnosis
I ran 3.5 miles today – trying to get back to normal work a little, but my mind keeps wandering. I spoke with Robert a bit today – a lot about how people offer to do things for you – take care of kids, bring you food, etc… Robert said that he has learned that you accept that – he says to accept and enjoy what people offer. I think this is going to be a very tough part of it for me.
I’ve also been asked by a few people if they can include me on church lists for group prayer, and I’ve been told by several people that they are praying for me. Not sure how to feel about that. I appreciate the sentiment, but it feels really strange to have people praying for me when I don’t believe in their God, or maybe any God in the way most people think of it. I think when you get down to it, it is more for them than it is for me, and I’m okay with that.
Tuesday, June 3, 2008
Monday, February 04, 2008
Today I went and saw Chris M. up at chemo and spoke with him for awhile. It’s sobering to talk with someone who has been going through chemo for years. He put it pretty plainly when he said that their goal is to make you as sick as you can stand. He said that the best way to explain it was “like you were strung out.” Chris goes through rounds of chemo every week – 1 week light, the next heavy, and he never gets more then a day or two where he is feeling ok. I can’t imagine the strength of will that it takes to keep coming down for treatments, that it takes to simply keep going, when you have that stretching out for you for your entire life. Chris was diagnosed with colon cancer at 23 yrs old, went through surgery, a year of chemo, and was pronounced clear. At the two year mark, when he was expecting to be told he was good to go, he was told that it had metastasized and was everywhere. He’s now going through experimental & brand new chemos that have all sorts of great side effects – the current one being an acne-like rash that covers a good portion of his body that bursts and bleeds often. He is still funny as hell though, and has some great stories about dealing with doctors: “There was no way I was going to let him check me…he had sausage fingers! I told him to let the nurse with small hands check me.”
He’s only 26 now.
So I got my Radiation planning done today, and that was a joy of embarrassment. Yes, I am actually forgoing the bare-ass pun that I could so easily use there. So here’s how it went: I go back into the room and change into the oh-so-fun gown, then sat in a room with 3 old guys and struck up a conversation with them about their radiation treatment. It was almost surreal – this guy who was thin as a matchstick who didn’t say anything, and the other two guys – one who looked like a banker that drove up from Spanish Fork (an hour plus drive) every day for his 15 minute treatment, who was 2 sessions away from being done, and another who was an islander who was halfway through his treatment. They both started talking about how bad the diahrrea was, and then I (thankfully) got called away.
I was pretty nervous about this, but I had no idea what I was getting into – A pretty, young nurse walked me back to a room with 2 other pretty, young nurses, and I thought, “of course its going to be 3 young hot women that are sticking contrast dye up my ass, running me through the CAT scan, and tattooing me for the radiation.” If there is a God, he has one hell of a sense of humor. After I introduced myself and made them all feel a little uncomfortable as I pretended not to know how the contrast was going to be introduced: “Oh, is this the oral? No wait, the intravenous contrast? Wait a minute, it’s going where?”
They started to explain the planning session to me – I would lay on a foam board with a section cut out for my belly (“don’t let your downstairs furniture get in there, or else it will be severely burned in a few weeks”), they would scan me, set up how the radiation beams were going to enter doing the least damage to other organs, and then they would tattoo me with dots around my ass to make sure they could set the machine (and me) in the same position every time I come in.
I think the saddest thing is how quickly you can get used to people sticking strange instruments, tubes (for all I really know, pieces of fruit), up your ass. By a few weeks from now, I’ll be so comfortable with my pants off around people, I’ll probably start forgetting to wear them to work.
After they scanned and adjusted me a few times, they let me lie there half in the CAT scanner, for 15 minutes or so feeling the cool breeze, while they went in and out checking things and conferring with a whole range of doctors. It was a really weird feeling because strange docs kept coming in and out and telling me I was doing just fine. I’m beginning to think they were just selling tickets to come and see the albino ewok they had captured. I could also swear I heard some giggling…
Anyway, once that was done, I got to sit down and hear another once-over of the joyous effects that the radiation treatment will have (severe inner and outer burns), as well as possible complications with the other organs that it partially irradiates (bowels, bladder, etc…). I decided while listening to this, that I would go in for the first appointment with aluminum foil wrapped around my frank and beans, and tell them that I’m keeping my boys safe. That oughta get a laugh…
A last story from the radiation planning: as we were pulling out of the parking structure, and up to the parking ticket shack, Tara and I were talking about the appointment
Me: “Y’know, I just have to keep reminding myself that some people actually pay young women to do that.”
We then pulled up to the ticket shack.
Me: “Yeah, but I’m not getting any sexual gratification from it.”
Parking ticket lady: “….”
She took that ticket and opened the gate quicker than I have ever seen it happen before.
I also talked with most of my management staff as well as previous supervisor and vice-president of the company today about the cancer, and everyone cried at me. It’s strange being the one with cancer and telling everyone else that it’s going to be ok. It’s touching that they care so much.
Thought of the day: Chemo is going to bite.
Sunday, February 03, 2008
Last night I ended up spending most of the night sharing Matan’s bed – he woke up at 1 am and I went in to help him get back to sleep – before I knew it, it was 3 am and Matan was laying across my legs to make sure I couldn’t get up.
Thoughts today – how do we deal with traumatic events? Am I happy that I don’t feel the need (yet) to do some insane life-affirming thing in reaction to the cancer? Or feel the need to point my life in some drastic new direction? Does this mean that I have been traveling in the right direction and doing enough life-affirming things? Or does it mean that I am so in my rut that I can’t see out of it?
So, I spoke with two of my neighbors today about the cancer and gave them the updates. It’s great to have neighbors that are so concerned. Once I have the pick-line in, I’m going to go over and show it to my neighbor’s kids – help de-mystify it a little, and let them ask questions. If there is one thing that is great about kids, it’s that they don’t fear asking questions, direct and honest. My neighbors across the street, Dennis and Danette, offered to run the Ragnar with me. I’ll see if they pony up the money, but this would mean that I almost have the full team ready to go. I’ll be excited to start running with everyone. Dennis also gave me a church book about a runner surviving cancer to read. Danette was sweet and stepped in with a line about how I might enjoy Lance Armstrong’s book a little more. I think it’s amazing how people try to help out continually, and I can’t find myself angry when they trip up doing it. I remember how awkward I found it when speaking to Jill or Greg after they were diagnosed with cancer, how flat, insufficient, and inept my words felt. Dennis found something that would have helped him and tried to pass that on. Isn’t that what we all do in these situations, isn’t that all we can do?
I visited Helen at the hospital today, she had a back surgery last week to put a rod in her spine, and she’s had a rough time recovering. It is always tough to see people lying in a hospital bed, especially after major surgery. There is something about the bed that makes you appear weaker, that shrivels you. Of course I end up putting myself in her place, and fearing how it will be once I am lying in that bed. I sat and spoke with Helen for a little while, and she was incredibly worried about me – tears of concern running down her face as she hugged me. Again, I found myself bowled over by the emotional capacity of those around me – I am extremely, extremely lucky to have been befriended by people like this.
She told me a great story about how on a trip she once accidentally climbed in bed with Nate (her son-in-law), that had me rolling with laughter. About two seconds later, Nate and Laurel showed up. We all got a chance to talk for a little while, and I caught them up on the latest cancer news. I’m going to try to stop by again tomorrow, after seeing Chris over at the Huntsman.
As I left, I stopped to speak with some of the nurses in that area of the hospital, one who had come in while I was visiting with Helen had mentioned that she had done a rotation with Dr. Sklow. I started out asking about the colostomy bags, and trying to get a good feel for what that will be like (oh yes, it’s going to suck), but I got some good news (I’ll have a home care nurse for the first week or so), some better news (yes, I will be able to squirt people if I feel like it), and a good time making a whole bunch of nurses laugh. I also found out that people do talk the entire time while on Versed. I am going to slip a recording device into Lev and Gidi’s colonoscopies, and my next one as well…I mean really, what the hell must we end up talking about?
I also spoke with
An on one last note – I lost my debit card the other day, and today I got a phone call from work about it. A woman named Andrea had found it while she was out running, tracked down my name on the internet, and ended up calling ARUP to try to get it back to me. When she finally got in touch with me, she gave me her name and address and directed me to her house to pick it up. Talk about your faith in humanity.
A pretty great day all in all.
Song of the day: Gold Song by Bouncing Souls.
Saturday, February 02, 2008
Didn’t write –
Friday, February 01, 2008: Day14 - Post Diagnosis
So I missed writing yesterday. I had a hell of a day working with the insurance companies, and realizing that in order to take the chemo I’d like to – capcetabine (pill form) instead of the 5-FU that will be a continuous flow through a pick line into a major artery for 6 weeks – I’d have to sell a few major organs. See, the insurance companies will pay for all but 15% of any prescription – which is great, however there is no maximum out-of-pocket cap. This means that for the $50,000 per round cost of capcetabine, I’d end up paying $7,500 for each round. That works out to roughly $60,000 for all the rounds of chemo I’ll be doing, and unless I start dealing other types of drugs, I don’t think it’s going to happen. So I’m still getting used to the fact that I’ll be walking around with this tube in my neck feeding me poison for 6 weeks straight. It bites. Oh yeah, and yesterday I got another CT scan – this one of my chest (another 2,000 bucks BTW, and yes, when I went in for the first one, I told them they might as well do the chest too, but they told me no…this is the fiscally responsible medical establishment at work folks…)
Today I went and saw the radiation oncologist – Dr. Hazard. And yes, before you ask, the Doctor that will be aiming radiation up my nether regions is female, roughly my age, and named HAZARD! If there is a god, s/he has a great sense of humor...or irony...or cruelty. I'm not sure which yet...
I went through the normal stages with Dr. Hazard – letting her know how much I know about the cancer, putting her at ease, and making many jokes about the cancer as she spoke. I asked about all the fun stuff – what I can expect from radiation treatment of the bowels, rectum, etc… It’s all sorts of neat – possible bowel obstruction due to a buildup of scar tissue as a reaction to radiation, increased diarrhea, severe burns outside (and inside) my ass, possible uterine infections, or at least a burning when I urinate (due to radiation hitting the bladder, an increased possibility of other types of cancer some years down the road….like I’ve said before, nothing but good news every time I see a doctor.
They will be doing the simulation Monday afternoon, and they will tattoo me then as well – I think it’s great that my first ink will be dots to help them guide the radiation to the right places in my butt – there is something profound there somewhere. I’ve been spending a good amount of time planning what I want to do to make the techs life interesting – everything from bringing in prosthetic butts for them to laser, to various designs drawn on my ass, to coloring it with glow-in-the-dark paint and telling them that I’m experiencing some strange side-effects (that last one is thanks to Tara’s parents). I’ll end up doing 28 rounds of daily radiation, and hopefully will be able to stay off the pain meds throughout the entire run. So happy it is the weekend. So happy that Sean will be coming to visit in 3 weeks. So frustrated that I’ll be welcoming him with a pick-line.
Song of the day: Caption Nemo by Sarah Brightman.
Thursday, January 31, 2008: Day 13 Post Diagnosis
No writing. Song of the day: Moonshadow by Cat Stevens
Wednesday, January 30, 2008: Day 12 Post-diagnosis
I have the feeling that today’s entry should be a long one, but will end up being a short one. I met with Dr. Weiss today, and with a social worker as well. My parents came down to the meeting, and that helped out a lot. My impressions leaving the meeting:
1. Of course the person that is going to do my regular butt-radiation treatments is a young female doctor. That’s just comedy-gold.
2. The rough part about hearing 70-80% survival is that your mind is saying “You mean 20-30% NON-SURVIVAL!!!”
3. Chemo is going to be either by a continuous 6 week iv, or pick with a portable pump that will run 24/7or an oral tablet taken daily (which only costs $25,000 more).
4. T3 N1 MX – they won’t be able to tell me the M level (metastasis level) until they have done the chest CT, and looked at my liver – ain’t that great.
5. I look forward to meeting with a doctor for days, and yet every time I meet with them, I feel like I’ve just been kicked to the curb, the carefully constructed hope that I have built with few facts and boundless supposition gets tossed away immediately. I think that this is really the toughest part about the process so far – each step I try to construct a new reality – Ok, there is a bunch of blood, but the docs say it’s probably just hemorrhoids. Ok, it’s not – it’s a tumor, but it’s probably just benign. Ok, it’s not – but at least it was caught early on. Nope, wrong again. Oh and by the way, hope it’s not in your lymph nodes, your liver, or in multiple other places we haven’t found yet. Even once I realized I’d be doing chemo/radiation – I spoke with people about their chemo experience and started to figure out what mine would be like – probably every week or two, I’d come in for a few hours and get the IV treatment with a group of people that are going through roughly the same thing. Instead, no, I get the choice of carrying a pump with me 24/7 or taking a pill. One seems that it reminds me to damn often what I’m doing, and the other seems to lack the gravity of the situation – If that’s the same way I take a fucking asprin then how important can it really be. Ha. I love that I can be concerned about whether or not chemotherapy has sufficient gravity. I wonder what that says about my personality…
6. The post op chemo treatment will last a little longer than 5 weeks. Ok, about 19 weeks longer. I’ll be doing 6 months of it. I can’t say how depressing this is.
7. The doctors seem dubious about my ability to compete in the Wasatch Back Relay on June 20-21st. The doubt I’ll be able to run through the chemo, and then get back to running so soon after surgery. I say Fuck em. They don’t know how goddamn stubborn I am.
Tuesday, January 29, 2008: Day 11 Post-diagnosis
Got a bit more work done today than yesterday. I don’t seem to be so much in the haze today. Looking forward to tomorrow and meeting the medical oncologist – Dr. Weiss. I had a dream last night – I was running my fingers through my hair, and it started coming out and actually peeling back from my head. It was pretty damn scary, and I didn’t think I was scared about losing my hair. Guess I’ll have to get used to dreams about my body betraying me in one way or another…
I ran tonight, don’t know how far, just bundled up and ran for 40 minutes. A few things from the run – the joy of running in the dark and the snow, the tension of running along the side of a slick road as cars drive by, the Hummer that swerved toward me to scare me, the family that stopped to give a lift to a man in a motorized wheelchair that was making his way along the side of the road, and the idiot that honked at them for stopping in the unused center lane of the road. The sheer joy of the final sprint of every run, the pounding of feet, the clockwork of my legs like pistons, and the steam of my breath in the night air.
Monday, January 28, 2008: Day 10 Post-diagnosis
Back to work today. I sent out an email to my trainers to let them know about the cancer. I expect to start answering questions tomorrow. I also sent out the email to the Ragnar team. I still need 4 more people, but then we’ll have our 12 for the 178 mile relay run in June. I think this will be a good thing and keep me focused on something other than the cancer, the chemo and the surgery.
Things to remember: there are a whole lot of people out there that care. I’m really lucky for many things – only 1 tumor that we know of, I’m young enough to take the chemo/surgery/radiation in stride, I have bosses that won’t fire me, I have insurance and a loving family. I have friends that will support me and neighbors that have rushed to offer assistance (and who shoveled my drive today before I got home). I’m lucky for a hell of a lot of things.
I need to approach this as a learning experience. There are not that many people who get this kind of opportunity to learn about themselves in this manner. I’ll get to learn about what I can handle and what I can’t – I’m sure I’ll learn more about how lucky I am in relation to others, but no matter what I’ll come away with more than I went into this with. If I can take something from it, then it will have been worth it. If I can learn something that I can pass on to Matan, to
…
Sunday, January 27, 2008 : Day 9 Post-diagnosis
So I tried to get up at 3:15 am to go and work out this morning. It didn’t happen. I laid back down and slept till 5, then got up to go work out, watched TV instead, then realized what I was doing, went back to bed, and got up at 6:30 to make breakfast and give out food to the homeless under the viaduct at 5th south. I’ve been planning this with my trainers for a little while, it sparked from Kaylene’s idea that we should do a service project to help bring the group together, and Brad’s experience with the people who did this one. It was only Curtis, Kaylene (and 2 of her kids and their significant others), Brad and I who showed up, but it was really fun. We spent 4 hours setting up, preparing the food, cooking it, serving it, then cleaning up.
When I first arrived, I was amazed by the number of volunteers there, and all of them out at that time of the morning, ready to go. I guess I should have figured it out when I asked the first guy how long he had been coming and he said it was his first time. When I asked him why he came he replied “Drug court made me.” As it turned out, the group of us were the only non-court ordered people there. As one homeless guy told me “if you’re not here because you have to be, you need therapy.” Still, all in all, it was a fun experience. I think my repeat offers to help during the morning really threw the organizers of it – at first they really disliked me moving around offering to help, and kept telling me to get back to my station. By the end (and once they realized that I was volunteering to be there), they warmed up quite a bit.
So, 3 more days till my first meeting with the medical oncologist. I’m nervous because I’ve finally realized that this is the “honeymoon” period of the cancer. Everyone is just finding out, it’s new and everyone’s compassion is high. I’m feeling fine physically, and I haven’t had to deal with the harsh brutality/reality of the disease yet. I think this first round of chemo and the surgery will go relatively quickly, but the following recovery, chemo, and additional 6 months with the bag will probably test me in ways I have no concept of right now. I think I will take
What a year this is going to be.
Song dedication: “Fuck, my Ipod died today before I could get all my mixes off it or any of the great music I downloaded from my friends” by Dov Siporin.
PS – I don’t think I can take much more bad news.
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