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Vegas, baby!
Haven't posted in a while - things have been hectic with work, but my health as been stable. Just about to leave for a great vacation to Quebec City, Toronto and Las Vegas. Vegas has been on my bucket list for a while now. I am very interested in experiencing the city's energy and "over the top" everything. My wife has been busy planning the trip (it's her thing) and we have a fun schedule with time for some nothing. We had been hoping to see U2 in Toronto, but the tour was postponed due to Bono's injury. Perhaps the band will give a free concert next year. You know, pro Bono. *cough* On the agenda? Cirque du Soleil's Ka, Penn & Teller, Crazy Horse Paris, a drive to Hoover Dam and Red Rock Canyon and more. I will post a few pics later!
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Human Error... Whew!
Had my (rushed) oncology appointment this morning. Seems the call I received from the Quebec hospital about the SCT (stem cell treatment) was due to a clerical error. Several myeloma patients were called and unnecessarily worried, but this is a minor human error.
This did give me an opportunity to discuss my latest results, and my myloma remains indolent and very stable. There were a few fluctuations with some numbers so additional tests may be ordered as a precaution, but overall, this is a huge relief.
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A turn?
Before I get into this post, let me say that due to stable blood tests, my oncologist (really an internal medicine specialist) said my blood tests would be at 2 month intervals, and it would be 6 months before he would meet with me again. So, I had blood tests done in February and April, with my next oncology appointment in July. Last Friday I met with my family doctor and asked about my recent blood tests. Everything was fine, but my last beta-2 microglobulin levels were at 168 mol/L and that 175 was the true indicator the disease was progressing and that treatment would be considered. Before that, they were 185 mol/L, so I felt pretty comfortable that everything was going fine. Then the phone rang.
About a year ago, my oncologist said he would refer me to a Quebec hospital for a high-dose chemo and stem cell treatment should my levels increase. Today someone from the hospital called about getting me on a waiting list. When I asked for what exactly (procedure or consultation), and that my local hospital had not mentioned anything about my disease progressing, the person on the phone said they would have to speak with the Quebec doctor to confirm the reason. I asked for her to call back to confirm the reason, but she said she would only call if necessary. As if living with cancer wasn't enough of a frickin' cliffhanger.
I called my local hospital's oncology unit, and of course, got the answering machine stating their office was closed at 4:00, even though it was 3:55. So, tomorrow I call to get some more info to get to the bottom of this. Here's what sucks however... my wife has won a gift certificate for a trip, and we chose Vegas - booked for July. Should this call be for the chemo & stem cell party, our trip insurance won't cover the $3k amount of the gift certificate thanks to a pre-existing condition.
Although I am not eager for the autologous stem cell treatment, I am not afraid of it... but that said, I certainly hope it doesn't interfere with our travel plans, and my wife's reward (gift certificate was part of an award). I will call my local hospital again tomorrow to see what's going on. I feel good. I don't feel like I have cancer. My only symptoms have been some pain in my spine from time to time, but that could be due to other factors. However, the Quebec hospital has my info and did call. Not to sound dramatic, but this begs the question... how close am I to starting treatment? We'll see.
UPDATE:
After calling my local hospital and asking for more info, they called back and scheduled me for an appointment tomorrow morning. Curious to see what's up.
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A First Anniversary
April 16th marks my 1-year anniversary of being diagnosed with stage I multiple myeloma (15% plasma cells). On the drive to my oncologist, I told my wife I was making a choice to remain positive should I receive bad news. During the past year, I've been able to maintain a positive and fairly relaxed outlook in my health situation. Although I wake up every morning and remember I have cancer, I often forget about it as the day progresses. I am very thankful the disease has stayed at stage I, and I hope I get to make a similar post a year from now. Heck... 30 years from now, really!
The year has flown by, reminding me about the importance of enjoying each day, the simple things in life, my wife and family, and my addiction to electronic gadgets. I haven't gotten the iPad yet, but man-o-man, I am tempted. I've also taken the plunge and renewed my MacWorld subscription for 2 more years. That's optimism.
So what am I doing to celebrate this big event? A blood work appointment in the morning.
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Going Public - Have you?
I am approaching the 1st anniversary of my official stage I multiple myeloma diagnosis. So far (and to my knowledge), only family, a few co-workers and some random people in my community know I have cancer. I was thinking of posting this anniversary on my Facebook status on April 16th. Is this a good or a bad idea? My reasons?
- Well, I don't really care who knows anymore.
- I would like to bring about some MM awareness.
- Surviving cancer for a year is a good thing.
Now, I realize that something like this would really publicize my health situation. I may not be considering all of the potential implications here, so I ask you, dear readers - should I or shouldn't I? When did you decide to go public with the news, or if you don't have MM, when did your loved one go public (or did you/they)? You can either comment publicly to this post, or send me a private email. The link is on the right.
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W5 Report on the high cost of cancer drugs (Canada)
Canada - The CTV investigative journalism program W5 will have a feature on the high cost of cancer drugs in Canada. The show airs tonight, Saturday, March 27th (check your listings) and there will be mention of Revlimid and multiple myeloma. I will post a link to the video once if appears on their website. For now, you can access the W5 website by clicking here.
UPDATE:
All 4 parts of Pills, Patients and Profits can be seen here. Two MM patients needing access to thalidomide and Revlimid are featured. 
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More on nanoparticles
See that photo? It may represent the future of cancer treatment. What you see are nanoparticles both within and entering a cancerous tumour cell carrying a dangerous payload. The particles deliver RNA interfering material that essentially attacks genetic material in malignant cells and kills them. This treatment is delivered through the bloodstream and the nanoparticles seek out the cancerous cells. According to to an article from Gizmodo:
"The 70-nanometer attack bots—made with two polymers and a protein that attaches to the cancerous cell's surface—carry a piece of RNA called small-interfering RNA (siRNA), which deactivates the production of a protein, starving the malign cell to death. Once it has delivered its lethal blow, the nanoparticle breaks down into tiny pieces that get eliminated by the body in the urine. The most amazing thing is that you can send as many of these soldiers as you want, and they will keep attaching to the bad guys, killing them left, right, and center, and stopping tumors. According to Davis, "the more [they] put in, the more ends up where they are supposed to be, in tumour cells." While they will have to finish the trials to make sure that there are no side-effects whatsoever, the team is very happy with the successful results and it's excited about what's coming."
This therapy has the potential to rid the body of cancer without the devastating side effects of chemo and other treatments. You can read more about the subject here.
Ah yes, the pop culture moment. I've been rediscovering Joy Division, and came across a video of a band called Steel Harmony doing a cover of their song, Transmission. The cool part? The cover band is a Caribbean steel drum band. Enjoy.
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Personalized Cancer Vaccines
This story is very encouraging. CNN.com ran a story about brain cancer vaccines. Unlike traditional vaccines, these are not given to people prior to developing a disease, but after patients have developed brain cancer. In a nutshell, doctors create a personalized vaccine based on the DNA fingerprint of an individual's cells. This allows the immune system to differentiate between healthy and "intruder" cells, and causes them to attack. Much like a smart bomb, the body can deliver a very precise assault on the cancer cells. Although this therapy is only effective in 40% of cancer patients whose cancer cells produce a certain protein, it is very promising therapy. The article does state these trials are ongoing and the long-term effectiveness of the vaccine is still being studied. Similar vaccines are also being studied for use with prostate cancer patients. For more information, check the following link for the article and video.
Since myeloma cells also produce a specific protein, perhaps this type of therapy could also be developed for MM patients, not to mention for just about every cancer. This is a very promising and encouraging therapy. Hell, I might just make it to my retirement after all.
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Hairpiece
One of those Internet treasures. Check out the hair and the lip synching.
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Shakin' and bakin' cancer cells to death
Unlike normal cells, cancer cells don't have an off switch and ignore the brain's efforts to trigger apoptosis, or cell death. Over the past few months, I've seen/read two reports of people using metals that bond to the cancer cells. Radio waves or a magnetic fields are then used to kill the cancer cells leaving the healthy cells unaffected. Could this be the future of cancer therapy? Here's a bit on both developments.
Last October, 60 Minutes ran a story about a man named John Kanzius. Suffering from leukemia, Kanzius built a radio wave machine he hoped would destroy cancer cells without chemotherapy. The main idea is to inject a cancer patient with gold nanoparticles, expose the patient to radio waves and cook the cancer cells to death. Unfortunately, Kazius lost his battle with leukemia, but created much excitement among cancer researchers. Here are three links to Kanzius' machine from various news programs:
Science Daily recently ran a story about using gold and metal microdiscs connected to brain cancer-seeking antibodies. These nanoparticles bond to cancer cells, and when exposed to a magnetic field they cause the cells to oscillate. This shaking triggers apoptosis and the cancer cells die. Although human trials are still years away, this is a promising therapy. To read the article, click here.
Both of these potential treatments are a huge improvement from chemo and other existing therapies. As my family doctor would put it, it's using a BB gun to kill a mouse, instead of using an atom bomb. The possible lack of side effects is greatly encouraging.
I leave you with the following video, from Iceland's Sigur Ros. It's a few years old (and you can tell by the fact it's the Craig Kilborn show), but it's amazing. Enjoy.
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Another Results Day
Good news to share. My blood tests were fine and the skeletal survey showed no lesions. My oncologist said the disease could remain indolent for years. I will still need a set of blood tests every 2 months, another set every 4, and another skeletal survey in a year. Should things change I will start treatment, which will most likely be a stem cell transplant. Although I am relieved, am also very aware the disease could progress at any time. And that begs the question...
I wonder what flips the switch from having an indolent myeloma to needing treatment? What triggers this progression? How does my body "know" keep this disease dormant? According to my oncologist, I cannot control the disease's progression and should just live a normal life. However, I am not convinced the disease is beyond my control.
My strategy - thinking positive, lowering stress, making better food choices (something I struggle with), taking vitamin D and curcumin supplements, and "willing" my body to kill the myeloma cells. The former might sound goofy, but hey, it's free and can't do any harm. Besides, when dealing with a disease that at times makes me feel helpless, it's empowering, and somewhat similar to meditation. Since I have very high iron levels, I've been advised to skip multivitamins. He's still unsure of what's causing the retention of iron, but believes it's due to the myeloma.
Thanks to all of you for your kind emails, and to fellow MM patients, keep on fighting. More effective therapies are just around the corner.
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Rockin' Birds
In about an hour from the time I write this I leave for the next results appointment. It's a strange feeling, knowing in just a few hours I'll either receive great news or hear that the disease has progressed and I'll need to start treatment. Of course, I am hoping for the best.
Until I post more later today, thought I would share the following video I saw on Boing Boing.
Ah, internets... is there anything you don't have?
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Anticancer Nanomedicines
Yeesh. I should update this thing more often. On the myeloma side of life, I have a skeletal survey on January 19th and a results appointment on the 25th, after which I will share the news. Thankfully for all cancer patients, the pace of progress in treatment options is staggering. Case in point - anticancer nanomedicines, a way of delivering chemotherapy more effectively, precisely and in higher dosage without affecting surrounding tissue. I'm unsure how this particular therapy could help myeloma patients, since our cancer tends to be spread and not localized, but still - one advance leads to another, which is always promising.
In dealing with this disease, Myeloma Canada has been an excellent resource and source of support. They've recently added a feature called Myeloma Connection, where patients submit their videos about dealing with the disease. Click here to visit the website and view the videos. The also feature a webcast on Understanding and Managing Side Effects.
This post's pop culture moment features John Lydon's appearance on Judge Judy in 1997. Sure, it's dated but still great fun to watch. Don't know the guy (I know my readers vary greatly)? He was once known as Johnny Rotten, singer of the Sex Pistols, singer of PiL and later a host of various tv efforts. Love him or hate him, he's a true individual.
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Meeeeeerry Christmas!
Merry Christmas and Happy New Year to all readers my blog. If you celebrate any other holidays and observances, best wishes to you as well. May the coming year bring much health, happiness to you and yours, and better treatments for multiple myeloma and other cancers. Let's hope for a cure while we're at it. On a personal note, my next results appointment is in late January, preceded by my 3rd skeletal survey to date, so I'll have news about that in a few weeks.
Ok... I can't wait any longer. I have to share this wonderful site, along the lines of Awkward Family Photos. Ladies and gents, here is Sketchy Santas. Ohhhhh baby, there are some good ones here.
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Shatner and Palin
Perfect follow-up to my last post. William Shatner appeared on the Tonight Show to do a "dramatic reading" from Palin's Going Rogue book. Then to Shatner's Surprise, Palin appeared to read from his autiobiography "Up Till Now". Made for an amusing Tonight Show moment.
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Tawkin' With Sarah Palin Fans
As a Canadian, I was relieved when Obama became President of the USA. It was a relief to have intelligence and awareness back in the White House, after too many years of Bush. But wait, as a Canadian, is this any of my business? You're darn tootin' it is. The USA has massive influence on the world stage, is our neighbour and trading partner, and major gaffes aside, it is a force for good in this world, all things considered (not including Iraq and Afghanistan). When McCain ran with Palin, I couldn't help but think, "oh no, here we go again", but voters spoke. Loudly. Whew.
Uh oh... look over yonder. Here comes Sarah Palin. Again. This lady is a somewhat more refined version of Bush, at least where ideologies are concerned. Yet they have so much in common - a disturbing lack of awareness or foreign policy, of management and did I mention awareness? There is a slim chance she may become the next President. She has supporters, who don't seem to know (or care) that she is an intellectual lightweight, covering her ignorance with America this and jobs that... which brings me to this video.
The people at New Left Media recently interviewed regular American folks at a Palin book signing. The interviewers asked open-ended questions to many people, and probe a bit to see if they have anything to back up their statements or beliefs. Like Palin during the Katie Couric interview and others, most of them don't, apart from "I'm an Amercian" or some anti-socialism comment (when cornered, play the pride, freedom and paranoid card). Many believe that Palin has the qualities and spirit of a great leader, capable of offering so much to the people of the USA. She does, if that means comedy.
Now I love people. All kinds of people. But votes of ignorance can be dangerous when folks see something that just isn't there. As for Palin, I'm sure she's a great person, a loving mother and a good soul. As a leader, she has much to be proud of... however, in my book, a truly smart individual would recognize that she is simply not up to the challenges posed by the presidency, and not even consider the position, else this becomes an example of the Peter Principle.
Without further ado (and ranting), here's the video.
And so ends my first armchair political blog post.
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The Ice Caps are Melting
Hmmm... what to write about this week. Gee, I wonder what treats Tiny Tim might have for us. Ah yes, a cozy yet nightmarish sing-along about melting ice caps and global warming causing chaos, drowning and death. The addition of little kids in this macabre sing-along makes it warm and fuzzy. Or not. I wonder what the kids were thinking, but they may have become desensitized during rehearsals, or at least held tight by their parents that evening with promises of new bikes and choruses of "there there".
The mere fact this video exists is an Inconvenient Truth. Meh, who am I kidding. I loved it.
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Art of Noise
While listening to some "oldies" on XM radio, I heard Close (to the Edit) by Art of Noise. The video features a little punk girl along with the AoN guys. This video was banned in New Zealand for encouraging violence toward children, which does not make sense once you've viewed the video. Seems the AoN guys wore masks in the video for more than the artsy feel - they did not want to be perceived as Huey Lewis and the News. Not sure how that would have been possible, unless Mr. Lewis also used chainsaws in his videos. Personally, I think a chainsaw should be taken to his recordings.
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How Do I Spell Relief?
 How do I spell relief? I-N-D-O-L-E-N-T. Had an oncology appointment today and got the good news. Blood test results are fine although they showed very high ferratine levels. I've read that bloodletting is a treatment for high iron levels. Drain some blood, drain some iron. I've yet to hear anything official from my doctor, and in the meantime, I'll stay away from magnets.
In my search for internet gems, here's another to share with you. Kermit the Frog doing his version of the Talking Heads' Once in a Lifetime.
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Carl Sagan - A Glorious Dawn (Auto-tune)
Among my interests are pop culture, science and having fun with media. I ran across a video that combines all three and had to share. Melodysheep, a YouTuber, took some Carl Sagan videos and mashed them up with Stephen Hawking video. Some auto-tune effects, looping and synthesizers were added for this impressive result. I must have listened to this 20 times so far. It's a fine tribute to both scientists. I really hope Hawking gets to see this. Be amazed and enjoy.
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The Devil and Daniel Johnston
 Many moons ago I had a radio show while at university. It was a great Thursday 8:00-10:00pm slot and I used this time to explore the best in alternative music. Well, at least what I considered to be the best. During this time I picked up a tape called Yip/Jump music by Daniel Johnston. Daniel was a unique and troubled soul, having bipolar disorder and believing Satan was after him. His music was very melodic, touching, urgent, sometimes disturbing and always deep. He became a musical star in his own right, and his songs have been covered by The Flaming Lips, Beck, Death Cab for Cutie and Tom Waits. I suppose you'll either love or hate his music, but if you do like it, you'll like it a lot.
A few years ago, a documentary film was made called The Devil and Daniel Johnston. I've seen it at least five times and continue to be amazed by his genius and shaken by his instability. In some respects, he reminds me of Pink Floyd's Syd Barrett.
As one of its coolest apps to date, Apple has released the Daniel Johnston's "Hi, How Are You" game. Appropriately, you play Jeremiah the Frog trying to escape Satan's curse, with some of Daniel's songs as background music.
Daniel is still around, living in Texas, still performing on occasion, and producing his own style of art. I recommend you take the time to check out his movie. Here's the trailer.
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Another Test Day
Sorry I have not posted in a while. I recently started working again after a great vacation, and it's been nuts, to say the least. So here's a bits and pieces post.
Another test day's already here. As usual, Bence-Jones and blood tests, following by waiting for a call from one of my doctors. To my knowledge, my MM is still indolent, but it's a bit unsettling to wonder for how long. I often forget I have stage I cancer... and it's nice.
A Canadian actor, Lisa May (37), was recently on television to promote her new movie and discuss her mutliple myeloma diagnosis. You can check out the video here.
A new Canadian lottery is starting soon, on the same day as my birthday, no less. So, wish me luck.
I'll leave you with this gem of a viral video.
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My Digital Life
What a busy past few weeks this has been. I'm glad to share that I passed both Comptia A+ exams and am now a certified computer technician. It was designation suggested for work and has been a personal goal of mine for a while. I've also been enjoying what was left of my vacation by doing some nothing, which takes some doing. Oh yes, and researching new vehicles, mainly small crossovers and SUVs. I can't but help being a bit morbid and wonder if it's the last vehicle I'll ever buy. Trying to decide between a Subaru Forester, a Nissan Rogue or a Hyundai Santa Fe. Or maybe I'll just get a team of dogs and a good sled to carry me through the winter. Mush.
Health-wise, nothing all that new to report. A Bence-Jones test I had done a few weeks ago was rejected thanks to traces of blood in my urine. I don't see any blood when I urinate and hope this isn't a sign of another health issue. Bone pain and extremity sensations continue, varying from throbbing, pins and needles to warmth. Could be related to MM neuropathy or just arthritis. That's the hassle of MM. It makes you paranoid since you wonder if every little ache and pain signals the progression of the disease. Oh cancer, how I loathe thee.
In changing the subject, I'll leave you with this jem - Idioteque by one of my very favourite bands - Radiohead. I love this band for their muscial complexity, energy, artistry and sound. Top notch, in my book.
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Thinking Ahead about Biophosphates
Howdy. I haven't posted in a while due to studying for my A+ Certification and enjoying goofing off during my vacation. All said, I've been feeling pretty good apart from increasingly frequent pain in my humerus, femur and tibia bones. My doctor says while this could be a symptom of myeloma, it could just be arthritis. I've also been experiencing what I think is neuropathy in my extremities (tips of fingers and toes). Although my MM has been diagnosed at stage I and indolent, it's still a bit unnerving to think about what might be coming. Still, I'm not letting this stop me from living and it seldom gets be worried. I went through a major "freak out" period just prior to being officially diagnosed, between my bone marrow biopsy and results appointment. I refuse to feel like that again. Although I'm feeling positive I am still being proactive.
Although skeletal surveys show my bones to be strong and free of lesions, I am aware that in the future I may need to take biophosphates. These drugs are also used in treating osteoperosis, and are used to bind areas where bones have been destroyed. A rare but serious side effect is osteonecrosis of the jaw, where the jaw bones do not receive adequate oxygen or nutrients and can collapse. This side effect occurs in 1-6% of patients, and can be caused by dental work prior to or during taking biophosphate drugs. For this reason, it is recommended patients have dental work compelted prior to taking biophosphates or stop taking the drugs prior dental procedures (on their doctor's recommendations, of course). In thinking ahead, I'm getting a filling replaced in efforts to fix a fractured tooth. Oh, the joy. My dentist said I would not be a high risk for jaw disease, but did recommend the problem be addressed.
You can read more about biophosphates and MM here.
Going to the dentist reminds me of the following skit featuring Tim Conway and Harvey Korman. I love how they stuggle to keep a straight face through the skit. Fortunately, my dentist is much more competent than this guy. Enjoy.
UPDATE: I jist goth backsh from da dentisht. Went well, but I'm shtill a bit fwozen.
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Multiple Myeloma Genome Unlocked
A fellow myeloma forum member once said "it's a good time to have multiple myeloma", in reference to the rapid pace of discoveries about the disease and what makes it tick. Case in point - the MM genome has been unlocked. Hopefully this will lead to more effective and individualized treatments, and possibly a cure down the road. I find comfort in my faith in science and medicine, and am confident several new options will be available when this disease progresses. Good news for anyone with MM.
In other news, it's been a busy week. I attended an intensive Cisco A+ Essentials Skills training and passed with flying colours. Now for the A+ Certification exam. Yep, I'm a geek. And speaking of which, someone took footage from Star Wars and created a Han Solo PI video, as a tribute (or sorts) to Magnum PI. Here's a side-by-side comparison. I think it's pretty impressive.
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