One Word

Imodium


'nough said.

results may vary

Let me begin by saying that while I am very fond of my newly reno'd bathroom, I am happiest spending the better part of my day in another locale. That said, I would have welcomed a slight glimpse of the weight loss promised by the drugs I am now taking. Constipation was not on the list of potential side effects, but that does seem to be more in line with my current reality. These are early days, however, and I know all too well how drug-related side effects can change on a dime. Sometimes, the icky stuff builds over time. Perhaps that is the case this go 'round. The tingling in my hands is certainly getting more pronounced as is the dryness of the skin on hands and feet. Udderly Smooth cream was recommended, and that seems to be helping. I know my luck is going to run out one day in the not too distant future, but I'm very willing to live just a bit longer with a horseshoe up my butt. After all, there are so many more things left to check off the ol' bucket list.

Random Thoughts

Back on drugs once more. The randomization put me into Group 2, so I won't be getting the investigative drug TDM-1. Instead, I'll be downing the Capecitabine and Lapatinib pills. And what a lot of pills they are. I take four Capecitabine pills twice each day with food. The five-pill Lapatinib dose is only once per day and is taken on an empty stomach. Timing, it seems, is everything. I'm to keep a log of how many pills I take and when. That isn't enough information for my liking, so I've also started a dose/diet/side effect log of my own to help me determine whether certain foods are causing me more discomfort than others, or timing of meals is an issue. What I have been able to ascertain thus far is that my experience doesn't fall within the realm of anything close to normal. For example, I was warned repeatedly by the study team and my oncologist that I could expect weight loss due to extreme diarrhea. I was instructed to purchase lots of Imodium to help see me through, at least in the short run. I also opted to pick up a package of fancy pants-type Depends in case the exploding bowel issue comes without ample warning. Alas, all the prep was for not. Okay, so I have a couple of extra BMs, and maybe they are slightly softer than usual, but they are nothing worth breaking open the Imodium over. Not that I'm complaining. At 52 (almost 53) years, I've come to accept the fact that I am somewhat atypical. So, for the time being, I'm loving the C&L treatment. Oh, and the hand-foot syndrome hasn't really kicked in either. Only have very slight tingling in my hands and nothing in my feet. Skin in those areas continues to appear and feel normal. Only have a slight, fleeting headache especially when tired, and a slight lower back ache. Again, nothing to write home about.

Turns out I'm somewhat atypical in terms of the progression of my cancer as well. Given that I have been without treatment of any type since October, one could be forgiven for thinking that things must have moved along to some degree. Yes, it is true I have more lesions on my lungs (as confirmed by the latest CT scan), but they are fewer and smaller than anyone would have thought probable. The largest, I'm told, is about 12mm. True, a couple of the sites have joined forces to become something bigger than the sum of their individual parts, but they, too, remain on the small side. Which does much to explain why I continue to feel well with good energy, and little shortness of breath or other discomfort.

The recent bone scan was the only test that did cause some temporary concern. Seems a potential spot was picked up on my skull. I was reassured this in no way indicated that there was anything wrong with my brain (dang, I was hoping for an excuse to explain my occasional odd behaviour) as the skull and brain aren't directly linked. Turns out it was that sebaceous cyst that was so very obvious when I lost my hair a couple of years back. Arthritis sites were also picked up and easily explained. Only other thing mentioned was a couple of very small spots near the base of my spine, but those, too, are thought to be arthritis - of the age-related variety no less.

Heart scan was fine. Nothing to report re that.

So there you have it. Nothing much to report other than I feel pretty much as I did this time last week. Other than a touch more fatigue, much of which I suspect is residue from the stress of wondering about test results, the randomization, and potential side effects of the drugs I would be taking for the foreseeable future.

Oh, that's the other thing. Should I continue to tolerate these drugs with minimal side effects, and if they prove to be of benefit, I will be on them indefinitely. Or until the drug companies decide they no longer wish to pay for my medication. Yup, life could be a lot worse.

Emotional Cocktails

Off to Vancouver today so there is no chance of being late for tomorrow's 9am appointment at the BC Cancer Agency. More blood tests on my dance card as well as another appointment with the oncologist. Assuming I got the thumbs up from Germany, I will be randomized into Group 1 or Group 2 in preparation for the start of the trial on Wednesday. Assuming, also, that nothing in any prior blood tests, CT scan, ECHO, MUGA, bone scan, etc. indicates that I somehow don't meet the protocol requirements after all. Confess my excitement re starting the study is mixed with a good bit of trepidation. After all, I don't know which group (and therefore which drug(s)) I'll be randomized into. Also don't know what, if any, side effects will be experienced once I start taking the drugs. Perhaps the side effects don't affect me at all. Or they might affect me in the worst way possible. Perhaps they will be short-lived, i.e. only last a few hours or a few days, or only with the first dose. Or they might get worse with each subsequent dose. Or persist as long as I'm taking those drugs. It's all kinda a crap shoot, but not in the fun Vegas sort of way. Hate to think today is the last day I'll feel this good - which is really good. On the other hand, I know tougher times lay ahead no matter what happens in the next few days or next few weeks. In any case, there is really no point in dwell on what might or might no happen. It's all very much out of my control. I'll simply plan for the worst, hope for the best, and try to dress appropriately.

Note to self: When I get home I must call the Olympic Sliding Centre in Whistler. Hear they are allowing the public to experience some of the more thrilling Olympic events, albeit on a smaller scale. Would love to try out the bobsled, with a professional brakeman, of course. Or maybe the luge - don't ya just love saying the word? Luge. Feels nice, gentle even. Although I suspect the actual ride is less so. I'm not really interested in the skeleton, for a couple of reasons: The name is rather unappealing, I'll be a real skeleton soon enough, and I can't lay face down due to my various medical circumstances. Hmmm. Will report back once I know if "the experience of a lifetime" is in my near future. Or not.

At least I've got heart

or so it seems from this week's ECHO. The tech at VGH was much nicer than the one at Lion's Gate who gave me my first and last ECHO. This time 'round, I got to see everything. Very cool. I can only imagine what expectant mother's must feel when glimpsing their soon-to-be-born for the first time. Seeing my own heart beating was nothing short of awesome. I could clearly see the valves opening and closing, the various chambers expanding and contracting as they pumped the blood around. Overall, the images looked not unlike something that was being recorded by means of a pin-hole camera - lots of shadows amid an expanse of graininess. One view was especially interesting. It looked like a bird's-eye view of me dancing the twist with the two valves substituting for my arm gyrations. Sadly, my heart's attempt has nothing on the likes of  John Travolta and Uma Thurman in "Pulp Fiction". Perhaps I can persuade my Valentine-shaped muscle to adopt more of a funky chicken attitude. After all, that's the only dance I've managed to perform with any degree of success.

Bathroom - at last

Keep forgetting to pass along a photo of the completed bathroom reno. Yes, it is true. I have no shower curtain, nor do I have a door on the shower stall. Instead, the space is open at one end of the fixed glass partition wall. Makes for easier access, easier cleaning, and a much brighter room overall. All faucets are activated via a single lever which makes much more sense ergonomically. The hand-held shower head is mounted on the wall by means of a grab bar. I intend to add another hand bar along the wall opposite the vanity. That bar will also serve as a towel rail. Bonus: the glass wall has added to the acoustic quality of the room. Now my shower singing will be amplified so all can hear it!

Vegas, baby!

Finally got my act together and rounded up the photos Penny and I took during our whirlwind trip to Las Vegas in late January.

The main purpose of the journey was to allow me to cross another item off my bucket list - seeing a staging of O, the water-based Cirque du Soleil show which is presented in a purpose-built theatre so it will never tour outside of Sin City. Since no cameras are allowed in the theatre, you'll have to take my word for it when I say it was the most amazing live performance I've ever seen. Truly. A mere five minutes into the show and we realized where it got its name - every few minutes we were saying "Oh!" and pointing at something different. Can't say that one aspect of the experience impressed me more than another. Still marvel that one trapeze artist was able to hold up another who lay across her feet - by using her feet alone! Then there were the three guys who dove in unison from a height far above any Olympic diving tower. It was so cool how different performers would appear and disappear via the pool (the bewildered scuba divers were a fun touch), and how so many things could be happening at one time that it was difficult to concentrate on just one thing. Aye, aye, aye but the clowns were a hoot! And the costumes, oh the costumes. And the music. It was all so very, very wonderful. Admit I cried when it was over. I didn't want it to end, even though the production lasted a good two-hours without an intermission. Well worth the trip, that was. ***Check out the Cirque du Soleil website for a preview, if you like. I think YouTube has some clips, too. Here's a sample of what you might find:  http://www.dailymotion.com/video/xael5b_cirque-du-soleil-o-time-warped_shortfilms
Note: Dude in the suit at the end of this is Penn from the Penn & Teller magic show ***

But we had time to explore some more of Las Vegas, as well.

An interesting aside: You don't need to pay to go to a stage show to marvel at the performances in Vegas. Many of the most entertaining sights are walking around all the time. Name a stereo-type, and it was there. From sugar daddies and their cling-ons to cougars on the prowl, from high-rollers and high-roller-wannabes to Elvis impersonators, we saw them all. And the range of dress was equally wide - from fur coats and leather jackets to cocktail dresses and silk pants that could only have been painted on. Very little, if anything, was left to the imagination.

We stayed at the Bellagio, and it turns out we could have spent the whole time there if we wanted.

The hotel lobby featured an amazing glass ceiling by Dale Chihuly and a sequin-covered carousel horse (similar to the un-sequined version used in O, which was shown at the Bellagio). The adjacent conservatory took on a Chinese New Year theme complete with botanical bunnies announcing the Year of the Rabbit.

Penny ensured we had a view of "Lake Bellagio". In addition to being a wonderful place from which to view the Strip, the room also afforded an excellent vantage point for taking in the fountain shows. These shows took place every 1/2 hour or every 15 min, depending on the time of day, and were synchronized to music that broadcast via the hotel station on our TV. Our favourites included the theme from "The Pink Panther" and the Andrea Bocelli/Sarah Brightman duet "Time to Say Goodbye". Of course, we enhanced the experience with a tipple or two of wine.

Isn't that a cool photo? Love how Penny managed to get her face positioned just so - and with a brand new camera yet! Wonderful effect.

Of course, no trip to Vegas would be complete without a bit of gambling. I had thought it would be fun to take in a blackjack lesson at the casino, but Penny took it upon herself to coach me on the flight south. Really enjoyed the hand signals (ensure the cameras pick up your activity in case of dispute) and was quite amused by Penny's insistence that I had no right to win the hands that I did. Apparently I have much to learn when it comes to gambling. Even so, I somehow parlayed a $5 initial bit into a full 5-10min of play at a table (Penny, a far better player, lasted at least 15min). In the end, I lost the little bit that I won (about $10 + the initial $5 bid) but chalked it up to an entertainment cost. What I really enjoyed, much to my surprise, were the slot machines. No, I didn't play the blackjack slots, just the plain ol' slots. The machines have changed a great deal since I last played at Loews in Monte Carlo back in 1979 - the one-armed bandits were well named. Nope, no spinning fruit for this gal. Instead, I sought to strike it rich via other means.

  The goal of Texas Tea was, like all such machines, to get three of a kind in a row. Thought the 20-criss-crossed rows would be my best option, but it turned out not to be so. I had the best results from playing five rows with one $1 bet per row. Really enjoyed what happened when three of a kind appeared: three armadillos danced and wagged their tongues, three steers snorted and steamed, three oil tycoons in their cars flashed their headlights. Occasionally, I would somehow get a bonus and the plump little tycoon would "write me a cheque" for extra points and declare ourselves "partners". Liked him best, however, when three oil wells appeared in a row. Then the tycoon would dance around before asking me where in Texas I wanted to place my own oil wells - these appeared with a touch of the game's computer screen. As long as the wells produced oil, I received extra points so I could keep playing the game. It was great fun with lots of on-screen activity to keep me amused. I Dream of Jeannie was another favourite. I especially liked how Jeannie would coo "Oh, Master" whenever I got three in a row or cheer "Yes, yes, yes! I knew you could do it!" whenever I got a bonus round. I Love Lucy was plain lame (sorry Cathy & Rose) - no voices, no music, nada. Most of the other games didn't have a lot of animation either, so Penny and I both bored rather quickly of those options.

Of course, we were in Vegas for a good time, but all that activity was rather tiring. Thankfully, the Bellagio had a spa. Penny took full advantage of the amenities and made it a true spa day. Sadly, due to the loss of so many lymph nodes and my otherwise general delicate self, I could not avail myself of the eucalyptus steam room, sauna, or whirlpools (although I did venture to do a quick dip in one warm whirlpool - it was too inviting!). In any case, we both had facials. I was surprised to find how a little hydration could make me look and feel so much better (camera-induced red-eye not withstanding).

We did manage to venture off the Bellagio property. Ceasar's Palace was located across the street and easily accessed via a foot bridge. If the Bellagio was over-the-top opulence, Ceasar's was down right garish. No wonder Cher was performing there. No, we didn't see her (or Barry Manilow, Celine Dion, or any other "headliner"). We did, however, see some of her costumes. Note that some came from her 2002 Farewell Tour. Me thinks I should have at least nine more years in my tour, don't you? If nothing else I can guarantee better fashion sense.

The thing about Ceasar's that impressed us the most? The public washrooms. Great graphics!

The one other hotel we explored was the Cosmopolitan. Opened just one month, it's the newest address on the Strip and sits beside the Bellagio. Very modern decor with lots of flashing lights. A massive three-storey-high chandelier hangs from the centre and a multi-media art installation occupies an ample portion of the hotel lobby.

There was a lot of other artwork all over this hotel, just as there was at the Bellagio, but here it had a much more contemporary flavour, like this "friend" Penny met along the way.

By the way, neither of us ventured into the Bellagio's gallery. At $15 entry fee, I opted to spend my money elsewhere. One of those places was the purchase of an original piece of fibre-related artwork. This was obtained at the Cosmopolitan Hotel via a vending machine that had dispensed cigarettes in a former life (check out www.artomat.org). For the lowly price of $5, one can purchase a piece of art which must fit inside a box the size of a cigarette pack. I thought seriously about the "hero" button that boasted "Bought Art", the altered photo slide, and the original painting on a piece of wood. But the fibre fiend in me opted for a Bad Boy Pincushion.

Yes, that is Benjamin Netanyahu's mug on the little pincushion. The machine might have dispensed a Putin, Palin, or any number of other bad boys and girls. What a hoot!

Oh, and the food. The food. How can you talk about Vegas without talking about food? We were only in town for two nights, so had limited opportunity to graze. Did, however, take in the Bellagio buffet on the first evening. There was a line up for the king crab legs but, since I prefer dungeness, I went for the smoked shellfish and salmon. The roast beef and lamb was sliced far too thick for my liking, but tasty if a tad on the rare side. Lots of salads, cooked veggies, sushi, and desserts besides to keep both my vegetarian dining companion and I happy. Penny insists the $5 all-you-can-drink champagne was the highlight, especially when she was offered it mixed with orange juice. I'm not a champagne lover, so passed. I did, however, suck up a very tasty cosmopolitan at its namesake hotel on the second evening. Turns out I could have sampled a different cosmopolitan recipe in each of the establishment's 10 bars. Instead, Penny and I enjoyed a delightful gourmet buffet at the Wicked Spoon restaurant in the Cosmopolitan. What we like most was the single-portion sizing of all the dishes - so nobody was digging around in the bowl/pan before you got there. The quality and preparation of the food was also superior to the Bellagio's buffet, in our opinion. Red wine-braised mushrooms; grilled calamari with saffron, celery and potato salad; gnocchi with lamb ragu and fresh goat cheese were but a few of the offerings.

In addition to a gelato bar (gelato made fresh each day), there were racks of temptingly beautiful desserts.

All in all, it was a fun-filled couple of days.

One regret: I didn't get a picture of me with my friend Jim, a Las Vegas-based interior designer. He and I have talked via telephone for years but never met until this trip. Jim has been a great help during my cancer treatments, especially in the early days (sadly, he lost his dear wife Pilar to breast cancer before we "met" during an interview about a property he designed, so he has been very much a voice of experience). On the up side, we had a wonderful face-to-face chat while Penny took time out in the Bellagio's spa.

Would I go back to Vegas? Maybe. But next time I plan to have one of those Elvis wigs knitted up so I blend in with the crowd a bit more.

Boo hoo, no longer #2

Yes, it's true. I am no longer #2 in the world when it comes to taking part in a specific drug trial. This new trial has me as one of 1,000 participants worldwide. Turns out there were earlier trials with a small group that proved very successful, so the researchers are trying the same protocol with a wider sample.

Currently waiting for confirmation from Germany (where the study is headquartered) that I can take part. Seems that at the time I was diagnosed with Her2+ breast cancer, some labs around the world were misdiagnosing the factor - something that must be confirmed prior to participating in this drug study as the drugs only work for folks who are Her2+. My team at the BC Cancer Agency is pretty certain I qualify as I've responded so well in the past to treatments designed to address Her2+ cancer. Apparently when I had my surgery back in Nov 2007, some extra tissue was "banked" (am told this is standard practice for any surgery performed in BC). A portion of that tissue has been sent to the lab in Germany for testing and will, thus, form the basis of the confirmation. In the meantime, I'm undergoing more baseline tests in preparation for next week when I'm scheduled to start the study - assuming all goes well at the lab in Germany.

For the medical types out there, the trial is sponsored by Hoffmann La Roche Limited and Genentech. Which might explain why I suddenly have a desire to see a performance based on the tales of Hoffmann (like the opera The Rake's Progress that I saw in New York so many years ago - with amazing sets and costumes by David Hockney). But I digress.

Much of the actual trial particulars will remain unknown until Feb 15 when I next see my oncologist. That is because once my participation in the trial is confirmed, I will be "randomized" (have my name fed into a computer) to see if I will be in Group 1 or 2 of the trial. Let me back up a bit to better explain.

This is a phase III study, the purpose of which is to compare the effects, good and/or bad, of trastuzumab-MCC-DM1 (T-DM1) with Capecitabine plus Lapatinib to find out which treatment is better. I will receive either T-DM1 or Capecitabine plus Lapatinib depending on whether I am in Group 1 or 2. Nobody will receive both. There is no placebo in this study. Group 1 will receive T-DM1, the investigational product. Group 2 will receive Capecitabine plus Lapatinib. The T-DM1 will be administered via IV. The others are all oral medications.

Regardless of which group I'm assigned to, regular tests and exams will be given to monitor my weight, blood pressure, heart rate, and so forth. Blood samples will be collected on a regular basis to check blood counts, liver and kidney function, and blood clotting ability. I'll also receive routine ECHO scans to look for changes in heart function.

Possible side effects for T-DM1 include fatigue, weight loss, nose bleed, upper respiratory tract infection, urinary tract infection, among other things. Less common side effects include such delights as seizures and ataxia. Sepsis and aphasia are rarely reported problems.

Side effects associated with Capecitabine and Lapatinib can include fever, diarrhea, vomiting, fatigue, hand-foot syndrome, eye irritation (also night blindness), anemia, pain in arms/legs/back, difficulty breathing. Dehydration due to bad diarrhea, heart dysfunction, lung problems, and liver inflammation are less common issues also experienced with these drugs.

Despite any of these side effects, it's worth giving the treatment a try. If it fails to work as expected or if I am unable to deal with the side effects, I can always go back to the drug trial that was originally on offer. The reason for trying this one first is two-fold: First, this trial requires that I not have had Lapatinib before. The originally trial had no such requirement. Further, if the treatment I receive from this trial works, I can have it indefinitely whereas the original trial only offered treatment for the six-month duration of that trial. And if neither of those options helps, I might qualify for other trials that are either already on the books or are coming down the pike.

Yes, I am a tad nervous about what lays before me. Reading about nasty potential side effects never sits well. On the other hand, I'm very excited about being able to help advance the treatment of cancer. Better than buying a pink blender, me thinks! In any case, I will just have to be content to wait and see whatever comes my way. With luck, I will continue to feel as well as I do now. And my waistline won't be too upset if I lose a bit of weight - which is one of the most commonly listed side effects of these drugs. Hey, things could be much worse. Besides, the sun is shining and my new sofa arrives today. Woohoo!

Rumours of My Demise ...

have been greatly exaggerated. But loyal followers can be forgiven for thinking the worst. After all, I haven't posted for some days now, and there was that "Janet Collins" obit in the Vancouver Sun last week. Rest assured, I am well. Sadly, the other Janet, the one in the obit, is someone I knew. We used to work together at MPR and constantly received each others email. A very nice, older woman as I recall. And a wonderful name to boot! Sorry to have read of her passing.