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Archive for August, 2008

By mouth:

  • Colace
  • Tylenol
  • Lorazepam

We just returned from the VICC and our appointment with Dr. Sheila. The PET/CT was indeterminate. The lymph nodes did show uptake of the isotopes but the appearance was atypical with malignancy. Given that my last chemo treatment was just a week ago the radiologist suggested that the uptake might be related to post-chemo inflammation. But he can’t call it negative either since there is uptake. Hence, indeterminate. They have to do the PET/CT so close to the last chemo to determine whether the third cycle of chemotherapy is advisable but that can result in indeterminate results like this. Auugggh!

What does this mean? They have to treat the indeterminate result as though it was positive. This is the conservative play. We are both concerned that I have only had two chemo cycles. Shouldn’t we at least do the third cycle that is already scheduled? Dr. Sheila says that, based on the fact that we are going to do radiotherapy anyway, the third cycle of chemo is an unnecessary risk to my health. The risk of infection and other side effects are high and at this point there is little upside benefit to my cancer outcome based on current research. She has checked this plan through with the head of the lymphoma treatment group in BC.

So, this means that chemotherapy is over. The third cycle of chemo and the associated tests are cancelled. Dr. Sheila will remain my primary oncologist and will continue to manage my file. However, I will now be referred to a radiation oncologist who will manage the coming radiotherapy. We will have a consult sometime in the next few weeks to determine what frequency of treatment I will receive and when it will start. Dr. Sheila assures us that for patients who have my stage of Hodgkins and are treated with 2 cycles of ABVD and then radiation have a 95% chance of being clear of cancer in 5 years. Even if I do relapse the chances of being “rescued” are 50%. However, there are no guarantees of anything. Sigh. I’m not a statistic, Jim… I’m a human bean.

It wasn’t the result we were hoping for but it’s not the end of the road. It feels like an abrupt change of course and a foray into a new and unknown area of treatment. We’re both trying to catch up and internalize the change of plan. However, it’s really just a continuation of the plan that was set out 3 months ago.

We’re hoping to go out on our boat for the weekend but the weather is unsettled. We’ll keep our eye on it over the afternoon and evening so we can make a decision.

“Welcome thy neighbor into thy fallout shelter. He’ll come in handy if you run out of food.” Dean McLaughlin

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Indeterminate

So, a quick update. My PET scan result is “indeterminate” which means that the radiologist couldn’t make a call whether there was or was not cancer there. They treat this like a “positive” in relation to my treatment options. I talked to my oncologist on the telephone and she wants to send me for radiotherapy now. We’re both very worried that 2 cycles of chemotherapy weren’t enough. We want to narrow our chances of a relapse. We’ve called for and are getting a consult with Dr. Sheila this afternoon at 1pm. I’ll do another update then.

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Chemotherapy Cycle 2, Day 23.

Temperature: 37.4 deg C.

By mouth:

  • Colace
  • Tylenol
  • Lorazepam

I wake up at 03:30, an hour before we need to wake up. I’m too anxious to get back to sleep so I shave and clean up while Cassie sleeps for another hour. When the alarm(s) finally go off (we’ve set our regular alarm, a clock radio, and the alarm on my cell phone), Cass makes us breakfast and we’re on the road by 05:15. Otis went to the dog sitter last night so we don’t have to worry about him but his absence leaves a hole in our routine that adds to the queerness of the early hour and general scanxiety.

We arrive at the ferry terminal in Swartz Bay at 05:45. I was worried that there might be some conflict over the travel voucher that we have from the cancer centre but the lady at the toll booth has obviously seen whacks of them and there’s no problem. The fare for our trip to Tsawwassen for the two of us and car is covered and we’re given a voucher for the return. We’re in the ferry line up by 05:50 and load onto the Queen of Saanich minutes later. We had expected to be on the 07:00 boat but the ferry corp must be putting on a 06:00 ferry in anticipation of the busy Labour Day weekend.

We take a walk around the old ship. It’s listing at least 5 degrees to port which I find disturbing. I ask one of the stewards about the list but she has an attitude of “yeah, so what” so I guess I won’t worry about it (!). We arrive and unload in Tsawwassen a little before 08:00 with only 4 hours to kill until my scan. I can’t eat or drink anything but water until after the test.

The weather is shitty. It’s seems like autumn has arrived over the course of one week. The rain is a persistent and miserable blather that matches my apprehension about today’s test. We noodle around the lower mainland trying to find something to occupy us for the time we have to wait, but nothing we can think to do is open or accessible. So, after only getting lost once, we end up at the Vancouver Cancer Centre. I had thought that our Vancouver Island Cancer Centre was an impressive machine. However, in comparison, the Vancouver Centre is a sprawling factory for the purpose of treating cancer. It’s like a university campus where, instead of packs of students hurrying to lectures, droves of patients are rushing for chemotherapy, radiotherapy, tests, or consultations. It’s an eye opener. British Columbia is fucking serious about treating cancer!

We arrive at the PET scan reception area just before 09:00. They’ve had a cancellation and want to try to fit me in but we’re concerned because I ate at 05:00 and have only fasted for 4 hours, not the required 6. However, the PET technician indicates that the purpose of the fast is not to clear the digestive track but to reduce your blood sugar. Since the PET scan works on the principle that radioactive sugar is required to uptake into “hungry” cells… well, they need to be hungry. If you’ve just eaten, the isotopes will have no way to get into your tissues. He quickly checks my sugar and I’m 5 and change which is perfect. Anything under 11 is workable.

I’m put in a comfy chair in their quiet room and the tech gets me relaxing. Cass puts the iPod on me and they drip the sugar into me over 60 minutes while I lay absolutely still. I’m careful not to even reposition my hands or feet or move my head for an entire hour. I’m absolutely determined not to create any reason for a false positive on this test. If anything is going to light up I want it to be any evil lumps that are still gasping for life after being strafed by the chemicals for two months straight.

Once the hour is up I’m allowed to use the bathroom and put on some hospital pajamas. Then they put me in the PET/CT scan machine. The scan takes a little over 20 minutes. The process of the scan and appearance of the machine is just like a regular CT scan. I have to remain absolutely still while it is occurring. By the time it is done my shoulders are numb from lying on the hard pallet and tingle as the blood returns to them. As soon as the test is done I feel like a weight is off my shoulders. Even though I don’t know the result I’m just happy to have the test over with. It’s not even noon. We’re done before we were even originally scheduled to begin.

We’re both starving and drive off through the pouring rain to find something to eat. We want to go to Granville Island but I get turned around. Instead of turning off Burrard onto 1st Ave W, I continue over the Burrard Street Bridge over False Creek to downtown. I have Cass turn right on Pacific, left onto Homer, left on Smithe, left on Howe, back over False Creek on the Granville Street bridge, exit on 4th Ave, right on Burrard (AGAIN) and finally, after a full tour of downtown Vancouver, right on 1st Ave W and into Granville Island. Please don’t let me navigate your road rally or scavenger hunt while I am being treated with chemotherapy!! Cass dealt with this amazing fuck up on my part with very good humour.

We go to the Marketplace at Granville Island and enjoy watching the people and boats and eat some delicious food. By about 13:30 we’re back on the road. Cassie is rocking and rolling through traffic and our old BMW was doing what it was meant to do. We manage to get to the Tsawwassen terminal just before 14:00. By a wonderful coincidence, Joe, Donna, and Terahn are a few cars behind us in the lineup. They are on the way home from their vacation in Medicine Hat. We pass a pleasant hour catching up and then it’s time to get on the ferry.

We return to Victoria in time to pick up Otis and are now in our usual positions in front of the tube. It’s been an eventful day and tomorrow will be another one when we get the results of the test.

Director: OK, Fallout Boy origin scene, take 1 -- action!
           [X-ray machine blasts straight on Milhouse's face]
 Rainier: [lifts up truck] Up and at them.
Milhouse: Thanks for the help, mysterious stranger.  Say -- I think
          those X-rays gave me super powers.
           [they stand around; Rainier scratches himself]
Director: That was perfect!  Let's do it again.
Milhouse: Uh, these aren't real X-rays, are they?
Director: Good question!  We'll check into that.  OK, X-ray machine to
          full power, and -- action!
           [X-ray machine blasts Milhouse's face; his skull becomes
          visible]

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I’m sitting in a coffee shop that has wi-fi on W10th across from the BC Cancer Agency in Vancouver. Thank goodness for coffee, free internet, and computers. Tom is currently napping in a dark, quiet room while his cells spend 60 minutes eating the radioactive glucose that they injected for his PET scan.

We left the house at 0520hrs this morning as we needed to be at the ferry dock at least 60 minutes prior to our desired sailing. This was so that we could take advantage of the free ferry ride provided by the province for people who have to travel for necessary medical tests. Surprisingly, there was an 0600hrs sailing that they put us on so we made it to Vancouver even sooner than we had hoped.

We cruised around in traffic looking for things to keep us amused until Tom’s 1145hrs appointment at BCCA, but both IKEAs and all my favourite tack shops weren’t open until much later in the morning. Tom was fasting so we couldn’t eat either. Alas, we headed downtown and only got lost once in the process. But man, traffic in Vancouver is gnarly…though I do love driving my car here because everyone is fast and aggressive! muahahahahahaha!

More surprises – other people were late for their PET scan appointments and they determined that Tom had already fasted enough, so he was taken in almost as soon as we arrived at BCCA. A nice tech started an IV, injected the goo, and then kicked me out to fend for myself for a couple hours.

So, I surf and drum my fingers.

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Bonjour Laziness

Chemotherapy Cycle 2, Day 21.

Temperature: 37.3 deg C.

By mouth:

  • Benadryl
  • Colace
  • Tylenol
  • Lorazepam

This is the day before the PET scan. It’s important for me to keep quiet and not do any physical work or exercise. Since the PET scan will find places in my body that are undergoing elevated metabolic activity, it’s important to make sure that all my healthy cells are reduced to a background level. That way only the cancer cells will show up since they will be the only ones dividing rapidly. I’m also not supposed to chew gum, not that I often do anyway. I suppose this could cause the jaw muscles to light up and make it difficult to see the lymph nodes high in my neck.

Tomorrow we will be waking up at 04:30, having my last meal before the scan, and then driving to the ferry docks to catch the 07:00 ferry. We have to be there well before 06:00 to utilize the travel voucher that we have from the Cancer Agency. We’ll get in to Tsawassen before 09:00 and then have plenty of time to get to the Vancouver Cancer Centre for 11:45 for my appointment. The scan can take up to 2.5 hours to account for getting me prepped and full of isotopes. Also, they validate the scan before you leave in case they need to do it over again. Otis is going to a dog sitter for tonight and tomorrow. Hopefully we will get home in time to pick him up tomorrow so that he doesn’t have to spend a second night there.

So, today is the scanxious day of scanxious days.

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Chemotherapy Cycle 2, Day 21.

Temperature: 37.2 deg C.

By mouth:

  • Benadryl
  • Colace
  • Tylenol
  • Lorazepam

Sorry that I missed posting yesterday but I was in rough shape. I have an anxiety attack about Thursday’s PET scan, not that there’s anything I can do about it or its results. I also have some obsessive adverse feelings about the chemotherapy. The thought of more chemotherapy was making me feel sick. Mentally, I know it is the thing that is curing me. But I also know it is the thing that is making me feel terrible. I keep trying to focus on one of my favourite Churchill quotes: “If you’re going through hell, keep going”.

Cass rescues me late in the afternoon and we head out to the new barn. We bring the truck and I have fun dragging the harrow upside down through the riding arena to level it out. Then Cassie rides Alli. The new barn is a hive of activity. One of the other riders is having a lesson and Carol arrives with a prospective boarder to show around. Also, Carol’s boyfriend Kevin is working on their little yard tractor. It’s a 70s vintage IH Cub Cadet. He manages to get it started with a jump from his car but it doesn’t seem to want to charge the battery. It’s a cute little tractor and it will be good if he gets it going so we can use it for dragging the ring.

We get home and have a dinner of jerked chicken, fresh from the farm broccoli, and rice. Yummy.

I need a Lorazepam to get to sleep but it works. I sleep soundly and wake up this morning feeling much better.

“Anxiety is the space between the “now” and the “then.”” Richard Abell

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Chemotherapy Cycle 2, Day 19.

Temperature: 37.2 deg C.

By mouth:

  • Benadryl
  • Colace
  • Tylenol

If you found the title of this post in any way understandable you were exposed to a historical era of computing that continues to hang on long after Y2K was supposed to finish it off: the IBM mainframe. I started my career in IT as a support specialist on an operating system called MVS. By coincidence, Cassie started her career as an operator on the same operating system. When we met the old fashioned way (in a bar), there were many other men trying to catch my fetching sweetie’s attention but I managed to grab her forever with the pickup line of…
“Hey baby, I’d love to IEBGENR your //INOUTB DD DSNAME=DATASETB into my //SYSUT3 DD UNIT=SYSDA. I know you want it.”

She replied…
“Well, I’d love to if you’d just //JOBSTEP EXEC PGM=IEBCOPY your SELECT MEMBER=(MA,MJ) INDD=INOUTC.”

And the rest is history.

I’m feeling a touch better today but I’m still a slow talkin’, slow walkin’, John Wayne-type of chemo patient. We start with coffee and scones at Pure Vanilla and then head down to Oak Bay Marina. It’s pouring rain and feels like fall has suddenly arrived. Cass notices that Mira Vela is back at the dock. We drop in there and Gord and Janet have returned. The poor weather made them think better of wanting to stay out for their last week of vacation. Gord whips us up a fritatta for brunch and we spend a pleasant couple of hours bantering and being regaled with stories of their trip to Desolation Sound. Tucker and Otis enjoy getting reaquainted with each other too.

We come home and rest and then go to the new barn. It’s very peaceful there and our horse has settled in well. He’s back to his demanding, cheeky self…just the way we like him.

For dinner we have steak and fresh corn on the cob from Silver Rill Farm. Yummy. Now we’re loafing and watching “There’s Something About Mary”.

“A computer makes it possible to do, in half an hour, tasks which were completely unnecessary to do before”. Anon

“Hardware: the parts of a computer that can be kicked.” Jeff Pesis

“I think there is a world market for maybe five computers.” Thomas Watson, chairman of IBM, 1943.

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