Saturday, March 29, 2008

A story

I've been waking up early, doing some yoga, and getting uncharacteristic thoughts in my head. It's been years since I wrote a story. But I wrote this one this morning, in the last half hour. Now I have to go to work. No time to edit. I hope you enjoy it.

So it is

Once upon a time there was a very wise old monk, who travelled widely to teach. One winter's day he travelled to a small village in the northwoods. The monk gave his teaching, and the audience was impressed, some calling him the wisest teacher to pass through those parts in many years. That evening the monk set out into the woods to meditate, as was his custom. He wore his heavy wool robes, the same thing he wore regardless of where he happened to be. He sat down in a secluded glade, crossed his legs, closed his eyes, and emptied his mind.

The monk meditated for a very long time, longer than usual. Evening turned to night and still the monk sat. Clouds gathered on the horizon, and still the monk sat. Snowflakes began to fall, and even accumulate on the monk's heavy woolen robes, and still he sat. Night turned to day and back to night. Eventually, the Enlightened One was buried in snow and he took his last breath.

Meanwhile, the people of the village were worried. They began to search for the holy man. They searched the sides of the mountain and the forest in the valley. They searched the farmers' fields and the children's favourite hiding spots. They sent word to neighbouring villages. But they did not find the old monk, for he was now buried in snow. The people were despondent, but as days passed they moved on.

Spring came, the snows melted, and the monk's body emerged. Wolves tore away his woolen robes, ate his flesh. Ravens ate his eyeballs. "So it is," the monk's body thought.

Summer came, the forest dried, and the monk's bones lay in a heap on the ground. One day a fire raced through the woods and burned up his bones, smoke to the sky, ashes to the earth. "So it is," the monk's bones thought.

Seasons came and went. Years came and went. The smoke of the monk's bones circled the Earth, was storm, was wind, was a tree's life, was breath. "So it is," the smoke thought. The ashes of the monk's bones grew into trees, which fell down many centuries later and grew into more trees. It came to pass that the mountains eroded and the waters rose and submerged the forest. For many eons a sea sat there, fishes and other strange creatures swam about. Then many eons later the waters subsided, the seabed rose and became mountains once more.

Snows fell on the mountainside, snow which was made of the smoke of the monk's bones, the mountainside which was made of the ashes of the monk's bones. "So it is," the atoms that had once been the monk thought.

The Earth circled the Sun and the Sun circled the Milky Way. One day, the Sun became a supernova. The supernova burned the Earth into no-thingness, and that was the end of all days, for without a Sun and an Earth there can be no days.

The supernova circled the Milky Way, which itself floated further out into Space. At the edge of space, the Universe bumped into another universe. Those two clouds of space and dust collided, and made another world.

"So it is," the atoms that had once been the monk thought, though this point was beyond thought. So it is, they simply were.

Tuesday, March 25, 2008

In case you wondered how many pills I take a day

Yoga, or what to do when insomnia hits at 5 am

I have these nice little blue pills now. I think I've mentioned them before. They help me sleep. I used to think that a good active day, eating well, maybe a warm bath and a glass of milk at bed would give anyone a good night's sleep. No more. Sometimes, like when you're on chemotherapy, you might need some pharmaceutical help.

Now the problem I've noticed with my little blue pills is that of "dose escalation," or, "Why doesn't one pill help me sleep as long as it used to?" First time I took half a pill of zopiclone I was out like a light for 8 hours. Now I need a full pill, and that will only do me for 6-7 hours. Yesterday I got up at 4 am, staring at the ceiling, after only 5 hours of sleep. Took another 1/2 pill and was out again until 9. I needed that.

But this is how people get addicted to sedatives. The drug info from the pharmacist warns of "rebound insomnia" when you go off of zopiclone, in other words, when you stop taking it (as surely you must) you can't sleep for a few nights afterward. Not looking forward to that. But in the meantime, I'll enjoy my sleep. I need it.

Which brings me to this morning, 5 am. I went to sleep last night at 9, so wasn't upset when I woke up after 8 hours. I got up, as I have been most mornings recently, in the darkness, and quietly did a half hour of yoga in the livingroom. I talk a lot about strength and fitness, but I've always felt that something was lacking. A good morning stretch, a little meditative insight, sure helps too. Gets me ready for the day.

Images from yogatherapycenter.org and ashtangayoga.info

Sunday, March 23, 2008

Starting Strength

I've started a new fitness program.

Now WHOA, WHOA, WHOA! Before I get a chorus of comments saying, "Take it easy, Bob, rest, respect what your body's been through...." let me explain.

First, one of my great fears when I first heard I had cancer was that I would be bedridden for months. That has decidedly not been the case. That I have been as active as I have been is truly a blessing. Second, I am resting. Every other day, sometimes more, I do nothing more strenuous than walking the dog (though if you know my dog, you might think this strenuous). Third, my sleeping is much better now that I have those little blue pills (no, not THOSE little blue pills!). Fourth, most of the research shows that moderate physical activity lessens the side effects of chemotherapy and speeds whole body recovery. (Of course, the challenge for me has been finding the line between moderate and more-than-moderate!) And finally, my way of respecting what my body has been through is by moving it, not allowing it to wallow in a lump on the couch.

Blue Steel

Now on to my new fitness program. It's called Starting Strength, and is a program for novice weightlifters (think barbells and clean and jerk, not dumbbells and bicep curls). Basically this program involves five simple but infinitely complex exercises (kinda like tai chi): the squat, the bench press, the deadlift, the shoulder press, and the power clean. I do these exercises with heavy weights and eat a ton of good, clean food. The goal of this program is to, well, get stronger. I'm trying to do this for the calendar. Basically beef up a little bit for the ladies.

I actually find this whole calendar thing rather amusing. Those who know me well know that posing in a fireman's calendar is about the last thing anyone would expect me to do. Goes to show, "Never say never!" and that life leads you strange places. Follow!

Friday, March 21, 2008

Mark's Daily Apple


Talked with Jodie earlier today. Her day job is as a personal trainer. She mentioned to me one of her clients, who is trying to lose weight with the Atkins Diet. Now I don't have anything against Atkins, in fact my diet is very compatible with it. It's certainly been skewed in the media, and a lot of people have put themselves on the diet without any understanding beyond "eat lots of steak and skip the potatoes." Inevitably, that approach doesn't succeed, leading people to fall off the wagon and gain back the weight. Then all the critics say, "See, we told you fad diets don't work!"

My main point is to share with you a blog that I read on a regular basis, Mark's Daily Apple.

Now I read a lot of blogs: blogs on exercise, blogs on paleolithic eating, blogs on low-carb eating, blogs on intermittent fasting. RSS is my friend.

But the one blog that seems to pull all the strands together is MDA. Mark talks about health, fitness, diet, and living a sane life in an insane world. He's big on variety in exercise (The case against chronic cardio), eating quality meats (organic, free range), healthy fats (fish oil, omega-3s, nuts, etc.), and veggies--but pass on the grains and carbs! Doesn't have much good to say about the USDA Diet Pyramid, which is pretty similar to the Canada Food Guide. He shuns sugar, candy, packaged "food products" and fast food, but encourages Sensible Vices such as dark chocolate and red wine. There's recipes and a great series called Eat this today, feel better tomorrow. He even has a post on Why the Atkins Diet works.

Anyway, Jodie, you should give this link to your client, and give him an assignment (you're his personal trainer, and he pays good money for your advice, so he'd better follow it!) Read the latest MDA post every day for a month. Follow the advice and start (slowly) to make changes. Same advice goes to everyone else.

While I'm on a diet/food/nutrition rant, I'll wrap up with Michael Pollan's Twelve Commandments for Serious Eaters, from his book In Defense of Food: An Eater's Manifesto:

1. "Don't eat anything your grandmother wouldn't recognize as food."
2. "Avoid foods containing ingredients you can't pronounce."
3. "Don't eat anything that won't eventually rot."
4. "Avoid food products that carry health claims."
5. "Shop the peripheries of the supermarket; stay out of the middle."
6. "Better yet, buy food somewhere else: the farmers' market or CSA."
7. "Pay more, eat less."
8. "Eat a wide variety of species."
9. "Eat food from animals that eat grass."
10. "Cook, and if you can, grow some of your own food."
11. "Eat meals and eat them only at tables."
12. "Eat deliberately, with other people whenever possible, and always with pleasure."

By the way, Chemo #7 was yesterday. I feel like crap, but good food and a walk with the dog will have me feeling better in no time. One to go!

Wednesday, March 19, 2008

Thank God I live in Ontario

Did a little research last night after speaking with someone about the cost of my therapy. I'd heard that rituximab is my most expensive drug, but had no idea how expensive it is. So I did a little googling, and found out some interesting things. First, it is not easy to find out what cancer treatment costs. Consequently, most of these figures are estimates. As for rituximab (the R in R-CHOP chemotherapy), it costs about $4000 per treatment, or $32,000 total for someone with my kind of lymphoma.

Finding information on the cost of my other drugs, cyclophosphamide, doxorubicin, and vincristine, was impossible. So I'll guess. I know that rituximab is the expensive one, so I'll assume that the other three combined cost the same $4000/treatment.

I was able to price out with complete accuracy prednisone and Neulasta--just looked on my bill from the pharmacy. Prednisone $57.44, and Neulasta $8303.90 (paid by my benefit plan).

So for drugs alone, I've cost the Ontario taxpayer at least $72,361.34.

I'll quickly consider (i.e. guess) the cost of my caregivers. I'll keep the figures I've used out of this, but taking into account my oncologists, nurses, and all of the other technicians, administrators, facilities, five years of follow up, etc., etc., etc.... $22,880.

Don't forget the trips to Sudbury, for which the Northern Health Travel Grant reimburses me $102.50 per trip. Eighteen trips (give or take) over 5 years equals $1845.

Oh, and my visit to emerg last month. Quick guess: $6440.

Specialists, my family physician, nurse practitioner, surgery.... $9200.

Total cost of my cancer: $112,726.34. Seems low.

(This does not include the cost of sperm banking, fertility treatments, naturopathic consultation, nutritional supplementation, intuitive healing, travel to Toronto, or the crystals that Anna bought me.)

I did find out that rituximab is not approved in every province. One article I read said that up to 100 Canadians just like me, with diffuse large B-cell lymphoma DIED between 2001 and 2004 due to delays in access to rituximab.

I've often thought that at the end of all of this, the Ministry of Health should send me a bill, telling me what my treatment cost (and saying at the bottom, "Paid for by the people of Ontario.") I think if everyone got a bill for their broken arm or stomach stapling or chemotherapy, we would be much more informed and involved when it comes to our health care system. Would you keep smoking if you knew that your 55-year-old friend's heart attack cost the province $250,000?

See also Thank God for my benefit plan.

Tuesday, March 18, 2008

Quick Update

We have been told that there are not enough updates on the blog so I am posting this quick one. (This one is for you Yves!)
Bob is doing well, more tired than he would like, but feeling pretty good all in all. Sleeping pattern experiments are interesting, as Bob is trying to eat earlier and go to bed earlier. 5am is not an unusual wake time and he is frustrated with lying there trying to sleep so gets up. Needless to say our schedules don't match much these days!
He is also trying to bulk up his weight and muscle mass for his pin up debut as firefighter of whatever month. So all of his time has been spent making and eating yummy food. Can you imagine Bob muscling up for a calendar!? Well, watch out 11 other firefighters - and ladies, remember he's MINE! Though we'd appreciate you all ordering calendars!
Chemo #7 is on Thursday. It feels so close to the end and yet as Bob points out, there is 25% of his treatment left. The first 2 treatments were intense and had significant impact on him, so we are preparing ourselves for whatever these next 2 hold. We have the 2 neulasta shots in the fridge, ready for Friday and 3 weeks from now. We'll see whether it is me administering them or Bob. Whenever I think of the price of those I feel like we won a small lottery! Hooray for drug plans! I can't imagine if we had to pay out of pocket as some people do... Also thankful for OHIP coverage and socialized health care!
23 days until the last treatment (but who is counting!!??)

Tuesday, March 11, 2008

Bloggy weather

Today’s Cancer Weather Report calls for sunny skies, moderate temperatures, and calm winds. That’s a big change from last week’s fever with an overnight high of 39 and daytime lows around 33.

However, overnight you can still expect insomnia winds, scattered night sweats, intermittent pee showers, and some mental fogginess after you take your sleeping pill.

Old man winter still has a few things up his sleeves though. Expect a shot in the arm next week and again in early April that will have you shovelling white blood cells. There will also be flash chills every time you think about chemotherapy.

Road conditions are improving, and we’re not expecting you to travel the cancer highway to Sudbury anytime in the next six months!

Bed rise will be variable, usually sometime between 5 and 10 am, and bed set is no better, again sometime between 7 pm and 3 am.

The long term forecast calls for dropping a belt notch or two, with moderating temperatures and hopefully less overnight precipitation. Prednisone mood swings should even out by mid-April.

All in all, expect more unsettled weather until mid-April, then look forward to one of the nicest summers in years!

Breast Cancer Site needs more "clicks"!

A friend just sent this to me and I am passing it along to you. Please pass it along to others.

"Life is not measured by the number of breaths you take, but by the moments
that take our breath away"

A favor to ask, it only takes 30 seconds....

Please tell ten friends to tell ten today! The Breast Cancer site is having
trouble getting enough people to click on their site daily to meet their
quota of donating at least one free mammogram a day to an underprivileged
woman. It takes less than a minute to go to their site and click on
'donating a mammogram' for free (pink window in the middle).

This doesn't cost you a thing. Their corporate sponsors /advertisers use the
number of daily visits to donate mammogram in exchange for advertising.

Here's the web site! Pass it along to people you know.

*http://www.thebreastcancersite.com/ *

Monday, March 10, 2008

Oncology Appointment

We saw Dr. Herst and Donna today. All went well. Bob will fill in more tomorrow with a witty blog entry. We had fun thinking of things to post while we waited for Dr. Herst in Room 6.
More later. Bob is working day shift tomorrow and needs to get to bed early!

Sunday, March 9, 2008

Marathon finish line in sight - ultramarathon starts as soon as I cross it

Sitting at home, alone, on a Sunday morning listening to the Grateful Dead. Outside it's sunny and cold. Other than 10 pushups and a walk around town yesterday, I've been very good at 'catching up on my rest' recently. I'm looking forward to seeing Dr. Herst, for the first time since January, tomorrow. Also looking forward to attempting another tour at work, starting Tuesday. Things have been uneventful since I was hospitalized. Been eating well, sleeping well (with some pharmaceutical help).

Here's a photo of Anna and Pam. Pam visited yesterday. Her and Anna took over the living room to make velvety dresses. Pam is wearing that heart around her neck until I'm well.

When do I get well? I'm much better now than I was a few months ago. I don't think I have cancer anymore. Think of it like a mess on the floor. The first few rounds of chemotherapy has swept up the mess on the floor and tossed it in the dustbin These last few rounds involve scrubbing the clean floor with a toothbrush just to make sure it's all gone.

But still, cancer is like a marathon (I've noticed that I spout fewer cliches as my cancer journey progresses, but it hasn't stopped altogether). A marathon with no end, or at least they don't tell you where the end is. At the end of chemo they'll say I'm in remission. I'll be in remission for maybe five years, then I'll be.... what? cured? a survivor? a-ok? So I'm running my chemo marathon right now, weary and ready for the finish line. But I'm aware that as soon as I cross the finish line I will face the five year remission ultramarathon. I suppose when the ultramarathon finishes I'll be walking the endless path of the survivor. Whatever. I'm just enjoying the journey I'm on.

Wednesday, March 5, 2008

Bob & Anna's excellent adventure

We're in Toronto right now, staying at Anna's mom's place. Anna had some appointments, and I came down to be with her. (All is going well with that, if you know what I'm talking about.)

So I left work yesterday morning, 7 am and arrived in Toronto just in time for her appointment at noon. I started getting tired right then, but didn't think that to be out of the ordinary, as I'd just worked a night shift then driven 5 hours. After the appointment, we had some running around to do, which took most of the afternoon. Once we got back to Di's house, we made dinner and flopped on the couches. Around then I started to feel unwell, like I might be getting a fever. Not a cold or flu, just headachey, with chills and hot flashes. I checked my temperature and it was normal. Went to bed at 8:30, but didn't sleep well at all. I developed an intense headache and was up to pee every 20 minutes. At 1 am I checked my temp. again and it was 39 C--I'm to go to emerg if it goes above 38.

Of course, Toronto had a big winter storm last night. After a few phone calls to figure out where to go (closest hospital, Princess Margaret?) all three of us piled into the car and headed off into the snow and freezing rain. We went to Princess Margaret, and were told to head off to Toronto General Emergency, just down the road. Thankfully the ER was slow, and it only took us an hour from the time we walked in the front door to the time that I had a room of my own.

It was 3 am now, and in addition to a fever and splitting headache, I was very tired. At least I had a bed! Poor Anna and Di spent the night on chairs! For me it was blood tests, an IV and some Tylenol to bring down the fever. I slept fitfully, but the fever broke. By 7 am the blood tests had come back negative and my temperature was normal, so I was discharged. We're still waiting for blood and urine culture tests, but for now we're back at Di's, resting, recovering.

Tomorrow we drive north again. I won't be back in to work for the remainder of this night shift.

Slowly, I'm learning that I need to slow down. No more working out two or three days in a row, followed by a day of rest. Now it's more like workout lightly one day, rest for two. I think this is due to my low blood counts, but last night's tests didn't show neutropenia. The other lesson learned is to keep all my medical info with me. I've been feeling so great over the last few months that I've not been carrying anything--maybe some anti-nauseants, but I haven't even taken any of those recently. Contact names and numbers, names of prescription medications, etc. I must carry those with me.

Tuesday, March 4, 2008

Article

I'm on the road down to Toronto today, blogging on the run. Just wanted to post up the link to an article on me that appeared in yesterday's Nugget.

Saturday, March 1, 2008

Thank you dear friends!

Anna here. I just wanted to post a thanks to all the lovely women helping to take care of Bob while I am away!!
Thanks Leslie and Jayne for making sure Bob got home safe from chemo and taking care of him settling him in at home and doing some post-chemo TLC that I can't do from here! I know he probably could have driven home just fine, but it helps that I didn't have to worry about him driving! It means so much for me to be able to trust that Bob is in such good hands. I bet Lynn got a kick out of it! Did she know that I called them? :)

Erin - Thanks for carpooling with Bob too! Who knew there would need to be another hospital trip so soon! I know it is nice to share the driving around on winter roads, I am glad it worked out for you both! I hope the girls got a good nap too.