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Archive for October, 2008

Number 13

13th Radiation Treatment of 20
Radiation Dose Received to Date: 19.5Gy
Total Dose Prescribed: 30Gy

Today I have my 13th radiation treatment. It’s followed by an appointment with Dr. Tanya. Basically everything is going as well as can be expected. My experience of fatigue is typical of what is to be expected by patients being treated with radiation. We have lunch at the club and then go home. I’m wasted and lie in bed with little will to live.

The title of this post will have instant meaning to my brother and sisters. In the summer of 1964 my mother and father took us all on a camping trip from Ontario to western Canada. The objective was to eventually get to Vancouver and the Pacific Ocean. It didn’t quite work out that way. Due to car trouble we had to turn back at Banff but the trip is my earliest memory that I can still recall as an adult. Some of the highlights that still stick in my mind:

  • Being pissed off at my mother because my Dad, brother and sisters all went for a ride in a friend’s Beaver float plane and I wasn’t allowed.
  • Dad getting really angry because he jack-knifed the rig and accidentally put one of the pointed fins of his new/used 1962 Cadillac Fleetwood through the skin of the 16′ rented travel trailer.
  • Losing a week of time in Flynt, Michigan because the Cadillac had a problem with the crankshaft and tie rods.
  • The retreaded tires on the Cadillac getting bulges the size of baseballs which caused the car to have to be driven at 20 miles an hour while the tires thumped alarmingly. My brother told his 2.5 year old brother (me) that the axle broke so I yelled “THE AXLE BROKE! THE AXLE BROKE!” over and over until Dad screamed at me to SHUTUP!! Dad had bought the ill-mannered Cadillac because of the make’s great reputation for high quality and luxury and it turned out to be the worst car he had ever owned… before or ever after. His next car was a bottom of the basement 1967 Plymouth Fury with less trim than a taxicab. It ran for the next 20 years as my Dad’s car, sister Carol’s car and finally sister Sheila’s car. It was reluctantly pronounced dead after skidding down a snowy embankment somewhere near Timmins, Ontario.
  • Being pissed off at my mother because my Dad, brother and sisters all went for a ride in the cable car at Lake Louise and I wasn’t allowed.
  • Coming up to Medicine Hat and being very keen to see the hat. I had fantasized that there would be an enormous hat there so I was very disappointed.
  • Waking up in Moose Jaw and fog being so dense that we didn’t dare drive until it had burned off.
  • The primitive toilet facilities in the trailer… so primitive… there were none. If you needed to use the toilet and we weren’t in a campground or near a gas station you had to use a contraption that was basically a toilet seat on three legs with a kitchen catcher dangling beneath. You did your business and then tied the bag and disposed of it. These bags needed the same care as radioactive cesium chloride. This piece of infamous equipment was unaffectionately nicknamed… “Number 13“.
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12th Radiation Treatment of 20
Radiation Dose Received to Date: 18.0Gy
Total Dose Prescribed: 30Gy

Today Lumpy’s Diary passes 100 posts. It’s been almost 4 months since Cass asked me if I might want to write a weblog about our experiences with my Hodgkin’s Lymphoma. It seems like a lifetime has passed since then.

Cass and others certainly enjoy poking fun at some of my idiot-syncracies relating to this blog. The most frequent poke is how I always mention what we had for breakfast, lunch, dinner and snacks. I shamelessly plug our favourite restaurants and Cassie’s cooking abilities. This is because I love food and eating and cooking and everything about food. One friend recently commented that she was surprised that I hadn’t gained 100 pounds since my cancer diagnosis. I’m actually the same weight as when I was diagnosed though I am considerably more flabby. Oh well… flab happens.

Today I get my rads at 8:15 in the morning. Then it’s off to the office for a day-long meeting. I last until about 2pm and then the fatigue hits me like a piano crushing me after dropping from a 4th story window. I come home and fall into bed. Later we go to the barn to visit the horse and I sit and look stupid while Cassie rides. It’s a life.

“The radical of one century is the conservative of the next. The radical invents the views. When he has worn them out, the conservative adopts them.” Mark Twain

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11th Radiation Treatment of 20
Radiation Dose Received to Date: 16.5Gy
Total Dose Prescribed: 30Gy

Rads are at 8:45 today. We stop by the boat early in the morning before my rad treatment to see how it is coming along. It’s totally calm at the yacht club so we raise the sails to air them out. One of the mechanics arrives and shows us how cool the sound attenuation is going to look on the engine covers.

I’m very tired and work as much as I can from home. I’m nervous, bitchy, tired of being tired and worried about the future. I’m not sure if this “bad day” is due to rad fatigue or is just a very bad day. Cass is under the weather and is staying home so at least I’m not alone. I seem to feel unusually crummy so I’m really wondering if this is finally the cumulative fatigue of the rads. I had a good sleep and can’t think of any other reason why I should feel poorly.

One thing that is bugging me is that my throat is still nervous. I keep tensing it up until it hurts and that seems to cause me to want to tense it up more. <sigh>. I’m sure this isn’t pathological, it’s emotional, but I still can’t seem to help doing it. Arrrrgh!! Even though I am tired and try to rest this nervous tic prevents me from resting comfortably.

So, now we’re lying in bed and I’m considering taking a Lorazepam. That will make it all better… for 6 to 8 hours anyway. Bombs away.

Nigel Tufnel: The numbers all go to eleven. Look, right across the board, eleven, eleven, eleven and…
Marty DiBergi: Oh, I see. And most amps go up to ten?
Nigel Tufnel: Exactly.
Marty DiBergi: Does that mean it’s louder? Is it any louder?
Nigel Tufnel: Well, it’s one louder, isn’t it? It’s not ten. You see, most blokes, you know, will be playing at ten. You’re on ten here, all the way up, all the way up, all the way up, you’re on ten on your guitar. Where can you go from there? Where?
Marty DiBergi: I don’t know.
Nigel Tufnel: Nowhere. Exactly. What we do is, if we need that extra push over the cliff, you know what we do?
Marty DiBergi: Put it up to eleven.
Nigel Tufnel: Eleven. Exactly. One louder.
Marty DiBergi: Why don’t you just make ten louder and make ten be the top number and make that a little louder?
Nigel Tufnel: [pause] These go to eleven.

Dialogue from This is Spinal Tap

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10th Radiation Treatment of 20
Radiation Dose Received to Date: 15.0Gy
Total Dose Prescribed: 30Gy

My radiation treatment is at 8am this morning. I’m not sure it’s that great to get radiation as the first treatment in the morning after the weekend but the technicians seem to have had their coffee and everything goes like clockwork. I’m wearing my “I’m Making Cancer My Bitch” t-shirt and the technicians get a chuckle over that.

Today is the half-way mark for my radiation treatments. I have received 15Gy and will receive 15Gy more to complete the prescribed dose. Things are moving fast. Soon rads will be over. Then what?

I seem to be avoiding any of the side effects of the radiation other than the fatigue. My skin seems to be in good shape and I don’t have any pain in my throat or when swallowing. I did have a little dry cough over the weekend but it’s impossible to attribute it to the treatments. I am very tired most of the time but it’s a different tired than the “sick” feeling I experienced under chemo. I feel dopey and sleepy whenever I’m not doing something or moving around. As soon as I sit down I want to close my eyes and snooze. For that matter, I may do that right now. Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

“Wo, we’re half way there
Wo, livin’ on a prayer
Take my hand, we’ll make it I swear
Wo, livin’ on a prayer”
Bon Jovi from the album Slippery When Radioactive.

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Some highlights from this weekend:

  • Making curry chicken on Friday night. We have found a fabulous recipe and may not need to go to Spicejammer anymore. Also, the President’s Choice “Naan in a Bag” is fabulous.
  • A pleasant time shopping in Langford with Cassie. Costco, Superstore, Liquor Store, Canadian Tire. I pick up a few bottles of a unique wine that we quite enjoy. It is the Chateau des Charmes “Droit” Gamay Noir.
  • Fun with Rob and Hilary over dinner on Saturday night. Cassie makes her wonderful Halibut with cream sauce.
  • Dim Sum with Mark and Diane on Sunday morning at Don Mee’s.
  • An unexpected visit from my brother who arrives on Sunday on the 9am ferry and leaves on the 3pm. It’s really good to see him and I appreciate all the trouble he took to come out of his way to visit me.
  • A walk with Otis near the barn in Central Saanich while Cassie is riding Alli. The weather is the epitome of crisp fall beauty.

Tomorrow I have rads at 8am. We may as well get the work week started off with a “zap”.

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9th Radiation Treatment of 20
Radiation Dose Received to Date: 13.5Gy
Total Dose Prescribed: 30Gy

This morning Cass makes me a tasty breakfast of eggs and toast. She heads off to work and I get a few hours of work in at home. Over lunch I go down to RVYC and help the mechanics and foreshoremen move our boat under the crane. The mechanics then lift the old engine out and set the new engine in. Then we tow the boat back to a slip. A milestone is reached in the project. The old engine is gone and the new engine is on board, albeit not installed.

After this, Cass meets me at the Shelbourne Travel Clinic and we both get our flu shots. We stop by at Pure Vanilla for lunch and I have a Nicoise Salad that truly can’t be beat. Mmmmmmmmmmmmm. Then it’s off to the VICC for my radiation treatment.

I’m lying there alone in the bunker, holding totally still with my neck hyper-extended and masking tape over my chin to help me keep it still. I know that, to the end of my days, the smell of the gum on the back of masking tape will bring back the isolation of lying on the table in the treatment bunker. They are doing the shot from the back first again but this time they warn me of it so I’m not too anxious when the gantry swings around behind me. Then it swings back and they do the second, third and fourth shots from the front.

I’m lying there waiting for them to come in and get me when the accelerator activates for a fifth time!! I lie there mortified with my heart beating crazily while the unplanned fifth radiation dose passes through me. My mind is screaming but I don’t dare move and cause the beam to pass through a vulnerable structure or organ. The buzzing whine seems to continue for minutes but I know it’s actually only a few seconds. I’m struggling with whether to jump up from the table when the shot ends.

As soon as it’s done the technicians rush in and explain that the 4th dose was interrupted when one of them accidentally hit the door unlock button. This automatically disengages the accelerator and is a safety feature designed into the radiation treatment facility. The “fifth” shot was actually the balance of the dose prescribed for the fourth shot after they relocked the vault. I’m freaked out by what happened but I understand. I think they probably haven’t put themselves into the shoes of a patient. I know exactly how many activations the machine makes and exactly how many heartbeats each one lasts in duration. I wish they would have come in to quickly explain what had happened before completing the fourth shot so I wouldn’t have been upset.

Anyway, rads are over for the week. Cass goes back to work and I come home. I’m exhausted. I think I may be starting to feel the radiation fatigue side effect. Otis and I are lying in bed watching TV and all is well.

So, I’m usually a pretty steady person but accidents have happened in radiation treatments. There was an accelerator produced by Atomic Energy of Canada Limited (AECL) called the Therac-25. Due to a bug in the software that controlled the doses administered, patients could accidentally be given doses 100s of times higher than prescribed. The equipment was designed to administer low powered beams without a filter or high powered beams with a filter. The software error was a race condition. In most cases the race was resolved by the correct outcome and the accelerator performed properly… giving low powered treatments without the filter and high powered treatments with. However, if the race was resolved in the error scenario then the high powered beam blasted through the patients without the filter. Three people died and more were burned. It’s worth reading the full story by following the link above but the root cause of the problem was basically insufficient testing of the system and an overconfident development team. Thank goodness that the software I design and help implement does not cause harm or death if it errors.

Another accident that I find fascinating and horrifying occurred in Goiânia, Brazil in the ’80s. A radiation treatment centre had been abandoned without properly decommissioning the gamma ray radiation equipment. A few ounces of radioactive cesium chloride was left behind rather than being properly taken to a fissionable material storage facility. Scavengers stole the lead container that the material was encased in. It was sold to a scrapyard owner who had it hammered apart and thought that the eerily glowing blue core was beautiful and wanted to use it to make a ring for his wife. The piece of cesium chloride was taken to his home and dangerous amounts of it were spread around the town, contaminating farms, soil, and houses. The wiki article is a fascinating read which I recommend. The bottom line was that the Brazilian authorities had to spend years and huge amounts of effort to clean up the mess. Four people lost their lives and hundreds received dangerous amounts of gamma radiation or ingested radioactive material. The three doctors who had run the treatment center were convicted of criminal negligence for not properly disposing of the cesium chloride.

One of the things that initially puzzled me was that many of the victims of the Goiânia accident received radiation in the range from 4 to 7Gy which is much lower than my prescribed treatment of 30Gy. One difference is that I am receiving my 30Gy at the rate of 1.5Gy per day over 20 treatments spanning 28 days. The Goiânia victims received their radiation over the course of minutes or hours. Another difference is that my radiation treatments are tightly targeted to maximize therapeutic effect and minimize damage to healthy tissues. The Goiânia victims were exposed to an indiscriminate field of radiation that bathed their entire bodies.

Reading these two pieces increases my respect for the radiation that is killing my cancer and affirms that fissionable material must be treated with the utmost respect. Amen.

And now for some boat photos. Here’s the boat under the crane at RVYC…

Out goes the piece of shit…

In goes our new baby…

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8th Radiation Treatment of 20
Radiation Dose Received to Date: 12.0Gy
Total Dose Prescribed: 30Gy

One of the issues from my pre-chemo workup was the need for immunizations. At the time, back in June, the flu vaccine for this year wasn’t released yet but it is now available. Cass and I are getting our flu shots tomorrow at the Shelbourne Travel Clinic.

Today we eat Naanwich for lunch for the first time in many weeks. It’s good. Then Cass takes me to get radiated. I’m in and out quickly. We have an appointment with Dr. Tanya afterward but I only have one question: whether it is ok to get the flu shot while I am getting radiation treatment. The nurse we see asks Dr. Tanya for us. The answer is yes, it’s ok to get the flu shot so we don’t even need to see the doc.

When I get home I am wasted. Very weary. I’m not sure if the radiation treatment is starting to catch up with me or if I’m just tired, but I get in bed and zone out for a few hours. I can’t sleep but I just lie there with my eyes closed while the TV plays in the background. I REALLY know how to party.

Cass comes home and we go out for Vietnamese food at our favourite noodle house.

When we get home there’s a message from my brother to call him so I do. We have a pleasant chat. He’s coming to the coast from Penticton to see his son Michael and Michael’s fiance Masha. He might have a chance to come over to visit me which would be a pleasure. The last time he visited was on that horrid weekend in June when Cass and I knew I was sick but before I had the biopsy operation and knew it was Hodgkin’s. It will be good to see him now that my treatment has come along so far.

It looks like there will be a milestone with the boat project tomorrow. They will be ready to pull the old engine out of the cabin and set the new engine in. There’s been pretty good progress in only a short week. Long may that last.

“If there hadn’t been women we’d still be squatting in a cave eating raw meat, because we made civilization in order to impress our girlfriends.”

“My doctor told me to stop having intimate dinners for four. Unless there are three other people.”

“If you want a happy ending, that depends, of course, on where you stop your story.”

All attributed to Orson Welles

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