Stem Cell City

Lisa Ray, a stunning actress that was diagnosed with MM, fights for stem cell awareness and research! For more information on Stem Cell City, go HERE

The World of MM

I'm in the middle of my marketing class right now. Clearly, I am paying attention.

Here are some links to news and updates in the Myeloma world. I'll explain them in further detail when I get home!

Carflizomib gets fast-track designation from FDA for treatment of refractory/relapsed Multiple Myeloma patients. Yay! Click HERE

Revlimid Maintenance and Secondary Cancers - More details emerge. BOOO! Click HERE

Why should you take Dex(amethasone) with food? Click HERE

The World of MM

Ok, so I FINALLY figured out how to find all the e-mails I flagged on my phone, which I had meant to relay onto the blog. They're all basically messages that I thought would be of interest and importance in the Myeloma community.


1. First off, Mike Katz, the moderator of the ACOR ListServ, messaged all the members not too long ago on the issue of myeloma stem cells. It's a very hot and heated issue in the MM world, as there are many on both sides of the fence in this argument. Basically, what this is referring to is the debate that there exists stem cells with a myeloma blueprint, allowing it to "resurface" or relapse following a transplant or chemotherapy. The argument goes on to state that we're basically hitting the bulls-eye on the wrong target. Yes, these drugs may be very effective against current existing myeloma cells in some people, but instead, our focus should be on developing treatments to cut off the myeloma at its root, in the stem cells, to prevent myeloma cells from ever coming back. The trick is HOW we'd be able to discriminate between normal, healthy stem cells and myeloma stem cells, and ensure that these two would be clearly and concisely separated from each other. It's a very important issue, as stem cells are not an unlimited resource for patients. From what I have read and seen, most patients will be able to harvest enough stem-cells for about two transplants. So. When and how to utilize these stem cells is a critical matter, and literally, makes the difference between life and death. I'm all for the research. Not that I am anywhere CLOSE to being a scientist by any means, but the theory behind all this seems to make sense. It's uncharted territory. Who knows, maybe this'll be the holy grail of what the Myeloma community finally needs to find a cure? So, provided are two videos from the IMF (International Myeloma Foundation) on the matter.


LINK
2. A fellow ListServ member posted this a while ago (Nancy!) The National Comprehensive Cancer Network (NCCN) posted their guidelines on for patients on treatment strategies for Multiple Myeloma. From the looks of it, it looks pretty comprehensive. But, a very resourceful tool for patients to use. You can find the site HERE. NOW. With all that being said, I just want to reiterate something that I believe is very important for patients, especially new ones, to know. When you're first diagnosed, often times the first question you'll ask is in regards to the prognosis, how long you have to live. Well, i'm sure some have their reasons for doing so, and I respect that. But in my opinion, I think it's a huge waste of time and energy. The thing is, with the extremely rapid pace that science is moving, any statistics on prognostics are constantly becoming outdated because of how fast research is going. So don't listen to any of it. Nothing good comes out of it. And honestly, do you REALLY want to know? It's a GINORMOUS ball of stress and pressure to live each and every single day out of however many years you may or may not have left to the fullest. Prognostics are bad news bears, in my opinion. 


3. I can't offer too much advice on this matter because my Dad is the one that handles all the finances of this stuff. But you don't have to be affected by cancer to know that financing treatment on your own, without any assistance whatsoever, is not an option. A ListServ member (Dianne!) mentioned a website that I think many will be able to utilize. Laurie Todd is a cancer survivor and has a site titled "The Insurance Warrior" that deals with a lot of insurance issues and money matters. Take a look. 


4. Lastly, it's been reported (again, thanks Dianne!) that Bortezomib (Velcade) can cause severe irreversibe bilateral hearing loss. I haven't had the chance to read it over just yet, but the link is HERE if you would like to check it out. 


That's all i've got for now!
Hope it helps


L

Oh Happy Day!

Well, it's probably time for an update on Mama Bear and LIFE! How sweet it is :) Before I begin, i'll apologize in advance if my grammar and/or sanity get lost in translation. The repairmen came to fix a bunch of things in the apartment, so you know what THAT means! Yep, i've been inhaling the wonderful fragrances of GLUE, DRYWALL, and PAINT for the last 5-6 hours. joy. 
Anyway...
Mama Bear had her check up with the good doctor on Tuesday to see if we would need to go through with another transplant. Fuck. The days leading up to the appointment were filled with absolute DREAD as I had been almost 100% sure that she would have to go in (which would have been the following Thursday aka TWO.DAYS.LATER). Over the break, I had the chance to go back to the Tom Baker Cancer Centre for one of her chemo sessions and was able to look over her blood work. Her CBCs were pretty stable, but her Total Protein, which is a mix of both good protein and BAD protein (aka Myeloma protein), had gone up a little. Based on our history, rises in the total protein have never been because of the good protein going up. Aside from that, her Beta-2-Microglobulin levels had also gone up a little as well... Recent discussions on the ListServ on this matter have informed me that it is a new prognostic measure for myeloma patients. In other words, you do not want this number going up. Of course, I didn't tell her any of this because I didn't want her to worry. But all these things combined led me to believe that a transplant would definitely happen. Needless to say, it wouldn't have been a very good start to the new year. But, to my surprise, my mom answered the phone with sunshine in her voice, saying that her m-spike (myeloma protein) had actually gone DOWN from 13 to 11. Granted, it's not a lot, but any decrease is a step in the right direction, yes? That was a SHOCK. Our doctor had also said that her FreeLite Chain things (i'm still unsure about what these are exactly, so i'll have to research it a bit more) went down a lot. Apparently, it is a better indicator of where you're at than the m-spike? This, i'm not too convinced. I'm a little skeptical. Why had we never looked at these numbers in all the appointments before???? So, it's still something that requires a little more investigation on my part. But I do trust our doctor. He's a very good man, I just don't understand what's really happening and need to gain a little more information/control on my part. Anyway, he recommended, instead of a transplant, adding on another drug, Revlimid, to her current regimen. That brings the total to a chemo cocktail of 4 different drugs: Dexamethasone (Dex), Revlimid, Bortezomib (Velcade), and Cyclophosphamide (Cytoxan). Technically, Dex is a steroid, but whatever. A drug is a drug. I'm not the most elated with adding another drug to her regimen, as the body can only handle so much. And with the recent findings that Revlimid can cause secondary cancers, well... yeah. But I suppose it's better than the alternative, yes? I'm pretty sure another transplant is due down the road, but right now is probably one of the worst times to do one. Flus, slippery ice, cold weather, etc. do NOT make for an easy recovery. Regardless though, I'm extremely grateful that that day was filled with good news, more so that my mom didn't have to receive any bad news. I could tell BOTH my parents were relieved. It's funny though. The night before, I prayed, like any other night. But instead I decided to ask just that the appointment would go well. Just one thing, not a whole list of things like my overall family's health, happiness, etc. One precise, specific thing. And it's like God, or someone, heard my prayers. So since then i've just been sending up prayers of gratitude and thanks. Aside from the obvious, I have nothing to ask for right now and plenty to be thankful for. I can tell we're all growing a little weary of this, but anytime you receive good news, it   fuels the fires that push you forward. A dear friend of ours, whom we met during this whole ordeal, recently came thisclose to dying. From what I was told, his numbers came back so high they asked the technicians if there was a mistake, perhaps in a decimal placement or something. But nope, they were the real numbers. This was all in the post-transplant recovery in the hospital, so you can imagine just how discouraging that would have been. This is hard for me to write because it could happen to anyone affected with cancer, but it was suggested that they call family members to say their good-byes. That...is just heartbreaking. But. One morning, the numbers came back and...THEYWEREZERO!!! Miracles happen, my friends. Keep the faith and never give up. 


So that pretty much brings you up to speed on where the family is at. In other news, I'm just about to start the Phase II of my fundraiser and awareness campaign "Monsters Against Myeloma". If you've been following the blog, you'll probably know what it is :) Someone had heard about our cause and very graciously donated their own tickets to Lady Gaga's concert in Salt Lake City in March. So i'm supersupersuper excited (and supersupersuper busy) to get this thing up and running ASAP, hopefully by the start/middle of next week! I plan on contacting the media within a couple days to get the word out. So if any of you, my beloved readers, know anyone in the Salt Lake City area wanting to go to a Lady Gaga concert (c'monnn, who WOULDN'T?!), please let them know about our event! I realize fundraising can seem a bit daunting sometimes, but our last winner from the summer won two tickets with $250 dollars raised (most of our donations have come from those just wanting to support the cause). It's a lot of money, but also very do-able! So we've got that in the works. I also am in the midst of applying for any sort of volunteer position at the Edmonton Cross Cancer Institute, just to show my gratitude. Over the course of my mom's treatment, the volunteers and nurses really were the unsung heroes. I cannot even begin to tell you how much these men and women do, how much love and care pours out of them. While doctors are amazing, these people are truly the faces of care and treatment and are severely underrated in our society. So I really want to try and give back to the community to show my gratitude and help others who are going through what I went through just over a year ago. If any of you, my readers, have not been directly affected by cancer, I would highly recommend volunteering at a local cancer center. Yes, it will be very uncomfortable at first. I remember the first day we went in for treatment. Dear lord, that was horrible and very unsettling. But you get used to it, as with all things, and have the opportunity (because it really is an opportunity) to meet the most amazing and courageous people, and have your lives changed. Forever. 
Either than that, school is keeping me on the hustle as usual, studying lecture notes (yeah, right), looking for internships, and getting involved. BUSYBUSYBUSY! 


Hope all is well with you, my readers.
Sending good vibes into the universe and you.

L

Monsters Against Myeloma

CALL TO ACTION!

Anyone who knows me well knows that I am an AVID Lady Gaga fan. She is my mother monster and I, her little monster. She is just... incredible. A force to be reckoned with. So, naturally, when word got out that she was having TWO shows in my city, I lost my shit. GONG to the SHOW. I bought tickets, and that was that! However, shortly after we found out that my mom was planned to undergo an Autologous Stem Cell Transplant close to the date of the concert. This kind of procedure reduces your immune system to nil. To give you some perspective, it is shot down to lower than that of a newborn baby's. It takes about 6 months, on average, for a person to fully recover from a stem cell transplant. So, unfortunately, that meant that I had to give up my tickets for the show. Sold-out concerts and jam-packed venues do not bode well for those wanting to avoid germs... As much as I love my mother monster (Gaga), I love my mama bear the most. I love everything about Gaga. Her music, her fierce independence, her love of life and passionate drive. All this is reflected in her body of work, right down to the sequin placed strategically, and unconventionally, on somewhere like her nose. But as much as I love her, I know she will FOR SURE be touring again in the future. I will have more opportunities to see her do what she does best. So instead of giving away the tickets, I thought, why not create something good from something bad? Thus, the birth of "Monsters Against Myeloma", a contest where a pair of floor tickets to Lady Gaga's August 27 show will be donated to the person(s) who can raise the most money for the MMRF (Multiple Myeloma Research Foundation). Multiple myeloma is a cancer not typically of the young. But the tides are changing. I have seen and heard of people being diagnosed in their 40's (like my mom) and 30's, something that would have been unheard of twenty years ago. I figure, with this contest, not only can we raise money for a good cause, but also awareness. We can raise awareness in a demographic that is unfamiliar with this disease. Encourage and inspire others. When people come up to me, upon hearing about my mom, saddened with the news, I make sure they know not to be sad, but to be angry, to rally together and fight for a cure. Although it is saddening, it is also something we should be fiercely angry about. These rising rates of cancer are NOT acceptable, and we need to make sure the right people know that. Through this contest, I am literally trying to save my mom's life. But not only that, also the lives of all the moms and dads and grandparents, and sons and daughters out there so that they might be able to see their children get married, have kids, and live a life worth living. I have included a link at the bottom of this post to our Facebook group page. Please join, even if you do not want to compete in the contest. Please join to inspire and encourage others to join and spread the word. Who knows, maybe even Gaga herself will get word ;) And if you like, please donate to this great cause. Paws up little monsters, paws up.

Monsters Against Myeloma

PS: If you have any ideas in how to further promote this event, PLEASE share them!

Wellness Wednesdays: Wireless Edition!!!

Wow. So until about twenty minutes ago, I thought TODAY was wednesday. Dang. Apologies! I decided for this week's WW to talk about wireless technology, with an important emphasis on cell phones. This form of technology is a very recent development that we've seen only within the last two decades or so. And a rapidly expanding one at that. I remember when I was little, my parents would carry around the ever-so elegant brick phone. Now, cell phones are capable of so, so much. It is most definitely a symbol of my generation. If you're like me, your phone is not just some gadget you use to talk to others, it is like a vital limb used for social networking, e-mail, internet browsing, texting, instant messaging, music, and of course, phone calls. So, you can only imagine the sheer amount of desperation and panic that ensues after you mistakenly misplace or lose your phone. It is pretty much like the apocalypse - for your social life. You literally cannot FUNCTION. How sad is that? I think this is an extremely relevant issue that we need to be aware of because wireless technology is only going to expand in the future. So here are a couple tips to keep in mind.

1. Don’t allow children under 12 to use a cell-phone except in emergencies. Organs that are still developing are more sensitive to the possible influence of exposure to electromagnetic fields. A child's skull is thinner than an adult's, and every millimeter between the handset that's emitting electromagnetic waves and the child's brain cells can make an enormous difference.

2. During calls, do your best to keep your cell-phone well away from your body. (When the handset is held four inches away, the amplitude of the electromagnetic field drops to one-quarter of its full value, and it is 50 times smaller when the phone is a yard away). Use the "loudspeaker" mode whenever possible, and a hands-free mode or Bluetooth earpiece (which on average gives less than one hundredth of the phone's normal electromagnetic emissions).

3. Keep your cell-phone conversations short. The biological effects are directly linked to duration of exposure. Text as much as possible.

4. Avoid using cell-phones when moving rapidly, for example when in a car or train. (There's an automatic increase in power to maximum when the phone is trying to pick up a new -- or increasingly distant -- relay antenna).

5. Choose the phone with the lowest possible Specific Absorption Rate (SAR) for your needs. (The SAR measures the quantity of radio frequency energy absorbed by your body). Classifications of the SAR values of phones from various manufacturers are available on a number of websites.

More on this later. Family movie night.

Source: Anticancer: A New Way of Life (website)

OZ!

Currently watching Dr. Oz's show on cancer prevention. Dr. David Servan-Schreiber, who is the author of "AntiCancer: A New Way of Life", of which I have been featuring quite frequently on WW, is a guest on the show. TUNE IN peeps!
Sent from my BlackBerry device on the Rogers Wireless Network

Wellness Wednesdays

#7 Avoid foods that have some form of sugar (or sweetener) listed among the top three ingredients: Labels list ingredients by weight, and any product that has more sugar than other ingredients has too much sugar. Complicating matters is the fact that, thanks to food science, there are now some forty types of sugar used in processed food, including barley malt, beet sugar, brown rice syrup, cane juice, corn sweetener, dextrin, dextrose, fructo-oligosaccarides, fruit juice concentrate, glucose, sucrose, invert sugar, polydextrose, turbinado sugar, and so on. To repeat: Sugar is sugar. And organic sugar is sugar too. As for noncaloric sweeteners such as aspartame or Splenda, research (in both humans and animals) suggests that switching to artificial sweeteners does not lead to weight loss, for reasons not yet well understood. But it may be that deceiving the brain with the reward of sweetness stimulates a craving for even more sweetness. Source: Food Rules by Michael Pollan

#8 Avoid food products that make health claims: This sounds counterintuitive, but consider: for a product to carry a health claim on its package, it must first have a package, so right off the bat it's more likely to be a processed rather than a whole food. Then, only the big food manufacturers have the wherewithal to secure FDA-approved health claims for their products and then trumpet them to the world. Generally, it is the products of modern food science that make the boldest health claims, and these are often founded on incomplete and often bad science. Don't forget that margarine, one of the first industrial foods to claim it was more healthful than the traditional food it replaced, turned out to contain transfats that give people heart attacks. The healthiest food in the supermarket - the fresh produce - doesn't boast about its healthfulness, because the growers don't have the budget or the packaging. Don't take the silence of the yams as a sign they have nothing valuable to say about your health. Source: Food Rules by Michael Pollan

#9 Eat your colors: The idea that a healthy plate of food will feature several different colors is a good example of an old wives' tale about food that turns out to be good science too. The colors of many vegetables reflect the different antioxidant phytochemicals they contain - anyhocyanins, pholyphenols, flavonoids, carotenoids. Many of these chemicals help protect against chronic diseases, but each in a slightly different way, so the best protection comes from a diet containing as many different phytochemicals as possible. Source: Food Rules by Michael Pollan

#10 No such thing as "microwave-safe" plastic!: So we've finally woken up to the fact that microwaving plastic baby bottles is plain tantrum-worthy. Not only does estrogen-mimicking bisphenol A (BPA) leach from polycarbonate plastic during regular use, but studies have found that one zap in the microwave can cause as much leaching as 60 to 100 rounds in the dishwasher. Kind of erodes your confidence in the whole "microwave-safe" label, doesn't it? Especially when you find out that no one regulates the term. Maybe we shouldn't be surprised that when the Milwaukee Journal Sentinel, in the fall of 2008, lab-tested 10 plastic food containers for microwave leaching, they found even plastics Nos. 1, 2 and 5 had BPA leaching. These included frozen food trays, microwaveable soup containers, and plastic baby food packaging. What? Isn't BPA only in No. 7 polycarbonate plastic? Guess not. Stay safe and follow these tips: 1. Never microwave food or drinks in any plastic. Period. 2. Never microwave or heat plastic wrap. 3. Don't put plastics in the dishwasher. Heat (including hot water from dishwashers) boosts leaching from purportedly dishwasher-safe polycarbonate, so who's to say your dishwasher-safe plastic won't leach when someone decides to test that too. Source: Ecoholic: Home by Adria Vasil

#11 Red Wine: Red wine contains many polyphenols, including the celebrated resveratrol. These polyphenols are extracted by fermentation; hence, their concentration is much greater in wine than in grape juice. Since they come from the skin and seeds of the grape, there are not nearly as many in white wine. The methods used for preserving wine protect it from oxygen, which means resveratrol is not exposed to rapid oxidation as it is in grape juice or raisins, which have lost most of their polyphenols. Resveratrol acts on genes (called sirtuines) that are known to protect healthy cells against aging. It can also slow the three stages of cancer development - initiation, promotion, and progression - by blocking the action of NF-kappa B. Because resveratrol also acts as an antiangiogenic, like thalidomide it can interfere with fetal development. This is one reason to avoid alcohol (even red wine) during pregnancy. Resveratrol supplements should also be avoided by women who may become pregnant. Recommendations for use: These results are observed with concentrations similar to those obtained after consumption of one glass of red wine a day. (More than one glass daily should be avoided, since it may lead to an increase in cancer.) Pinot noir, originally from the damp climate of Burgundy, is particularly rich in resveratrol. Source: AntiCancer: A New Way of Life by David Servan-Schreiber

** I should note that NF-kappa B, especially for MM patients, is BAD NEWS BEARS! I don't really want to get into the details because this post would never end, but you can go to Margaret's Health Blog (there is a link on the side of the home page), and read more about it. She has a PLETHORA of knowledge in regards to this subject (and many, many others), so I encourage you to at least take a look :) **

Shame On You

My heart is breaking. I am dismayed, shocked, and pissed off. I just finished watching a special that CTV aired regarding drug manufacturers and the sick, titled “Pills, Patients & Profits”. I knew it was bad, but I had no idea it was this bad. The plight of a cancer patient is a tremendous one. Aside from all the physical pains that one must endure, there is also the uphill battle against the big pharmaceutical companies who make a living off of the sick. Yes, they manufacture and distribute the drugs so vital to a patient’s health, drugs that literally save lives – but at a price. A very high price, might I add. According to Russell Williams, President of Rx&D, the company responsible for speaking on behalf of the pharmaceutical companies in Canada, it costs about $1 billion dollars to research and develop a drug (LIES!). This $1billion figure is used as justification for the high drug prices that patients must pay in order to stay alive and is based on research done at Tufts University in Boston. Critics, however, claim such statements to be a load of BS and actually estimate costs to be substantially lower. Dr. Marcia Angell (physician, professor, former Editor in Chief of the prestigious New England Journal of Medicine and author of “The Truth about Drug Companies”) claims that these pharmaceutical companies report such high costs because, like all drug companies, they are running a business. Simply put, they are profiting off of the sick. According to Forbes magazine’s list of 2,000 multinational companies, the annual profit margin is about 8%, but for the top pharmaceutical companies, the average profit margin is about 20%. Angell states that, in reality, it takes about $100million dollars (instead of $1 billion) to research and develop a drug, a difference of about 1000%. In fact, the $1billion figure calculated by Tufts University was actually based on industry supported economists using confidential data submitted in secret by companies that no one else could see except those economists. According to Donald Light, a professor at the New Jersey School of Medicine (whose specialty is the economics of drugs), “they essentially take what they claim to be $71 million of direct costs and inflate them up to $1.3 billion.” So REALLY, these so-called R&D costs don’t even amount up to the $100million figure that Angell had estimated, meaning that the amount of inflation is greater than 1000%! OH HELLLL NA! How is that even LEGAL?! Oh but that’s not even the worst part… According to Light, about 84.2% of drug research money around the world comes from public and charitable sources. Youuu guessed it! Taxpayer’s money, essentially, your money. Angell states that customers actually pay twice when it comes to their drugs: for the research and at the pharmacy. Much of the R&D done by companies is funded by the public purse. Companies do not start paying for R&D until the drug goes into field-testing. She says that much of the money actually goes towards the promotion of products instead of R&D when it comes to the companies’ own costs. 24% of sales dollars goes towards marketing, while only 13% goes to R&D. That 24% is money used to persuade clinicians into prescribing drugs that they wouldn’t normally prescribe (through paid conferences, gifts, etc., which, by the way, are all labeled as “marketing costs”). This, in turn, helps feed the vicious cycle that is BigPharma throwing the sick people under the bus, all while raking in the major CASHOLA. As mentioned, many critics of the pharmaceutical profit margins claim that that is simply so because the “sick” market is the market to be in. Light recounted an interview with the retired head of a pharmaceutical marketing department who called that “the exploitative marketing model” – “exploit very sick people with very high prices because they’re desperate and don’t have a choice”, said Light. Williams (head of Rx&D, if you remember) defended his stance by stating that pharmaceutical prices are “entirely reasonable” because “we set prices in a way that is considered very fair on international norms”. What the hell is this guy on??? How delusional can you be?! NO ONE can afford that shit! But I suppose one must remember that money often speaks louder than the dying.

Now, this piece takes an unexpected turn and actually showcases not one, but TWO MULTIPLE MYELOMA patients (us myelomians (?) and those caring for us are not accustomed to the limelight). Throughout the rest of the segment, they highlight the struggles and pains each person goes through to obtain the life-saving drugs essential for their survival. Two drugs that all of us are very familiar with, I am sure: Thalidomide and Revlimid. Thalidomide, currently, is not covered in Canada, and thus, costs about $4000/month! (So much for universal healthcare…) Bart Barlogie is the man credited for discovering thalidomide’s use for MM and is basically heralding it as a potential cure (a word that we cannot use lightly) for the disease. He published his findings in the New England Journal of Medicine, which resulted in a curious, but not surprising, string of events (did I just contradict myself?) At the time, the manufacturers of thalidomide, Celgene, were selling the drug in British Columbia for about $400/month. This was in 1999. Not long after the article, Celgene DOUBLED the price to $800/month in 2002, and then in $1500/month in 2003, and then AGAIN to $2400/month 2003. By 2005, the price for a monthly dose of thalidomide had soared to $3600 – a 900% increase over six years. Once again, WTF?!?! A textbook example of the “exploitative marketing model” previously mentioned. Basically, Celgene raised their prices just because they could. Dan Childerhose, of Dorchester, Ontario, was one of the people highlighted in the segment with MM. He had achieved remission, but was concerned about the possibility of relapse. So, he decided to take thalidomide as a good maintenance drug, to prolong his remission as long as possible. Because of the extremely high costs in Canada, Childerhose found a legit manufacturer of thalidomide in Mexico that sold a monthly dose for, get this, $90!!!! But that course of action was abruptly shut down when the drugs were destroyed at the border. As a last resort, Childerhose applied to Celgene to receive thalidomide under compassionate grounds, which would give him the drug for free under strict regulations involving an assessment of his net worth. Compassionate or Cruel? Childerhose wasn’t accepted and wasn’t even given a reason why he was refused. The company didn’t even have the decency to sign his letter of rejection. Ouch. “It’s like Russian roulette,” said Childerhose. And the one holding the gun? “The pharmaceutical company”. The other man highlighted in the segment was one from Nova Scotia fighting desperately to receive Revlimid, as it is not covered there either. You can watch the whole segment at the link provided. From watching all of this, I am…disgusted and nauseated at the pure lack of HUMANITY these companies have. HOW do these men and women sleep at night? Shame on them… But ultimately, it is not just Big Pharma that is guilty of, essentially, robbing us of our loved ones, but also those members of the government who have the power to make a change, to enforce tighter rules and regulations on pharmaceutical pricing, and to stand up for the people. After all, that’s what the government is there for no?

Pills, Patients and Profits

In a related topic, I also found a newspaper article (from about a week ago) in the Calgary Sun that outlined just how much health care executives in Alberta make. According to the article, the bonuses that Alberta healthcare executives receive is “’based entirely’ on the Calgary Health Region Balanced Scorecared where everyone win except the public” The largest bonus received last year was * drumroll * $129, 462, while those further down the food chain received a $94, 686 and $70, 430.54 bonus. Kevin Taft of the Liberals stated, “Enough already. If you’re getting a salary of $200, 000 to $400, 000 you shouldn’t need a bonus to do your job. It’s beyond the pale”. AAAAAMEN! He continued, “pay public servants well but they need to bring a spirit of public service. I think management should be embarrassed. A bonus of $100,000 in the public sector, where do they get off? Why are bonuses even being considered?” Rick Bell, author of the article, makes a good point. “These bonuses happen in a recession when the health care top guns leave much to be desired and the province muses about wage restraint for the folks working for one small to middling cheque and not two fat ones.” He also writes, “On Tuesday, Gene Zwozdesky, the health minister, calls this ‘a matter of history’ and says ‘in light of the difficult economic times’ bonuses for bigwigs are ‘limited to 20% of their yearly contracts.’ You make $300,000 you get $60, 000 more.

Seriously. There is something seriously wrong with our society. Since when was it ok to trade in a sick patient for a new car??? Did I miss the memo?! This is NOT ok!!!

"Health Fat Cats Land Fatter Bonuses"

Wellness Wednesdays

People are getting sick. If you look at the statistics out there, you can easily see that cancer, heart disease, etc. are on the rise, and fast. I was reading a pamphlet not too long ago while we were in treatment, and it said that in Alberta alone, about 1 in every 2 (!!!) people will be diagnosed with cancer. I’m sorry, come again? 1 IN 2!!! Now, I consider Alberta to be a fairly healthy province, so can you imagine what the numbers would be for a less developed area? The times are changing. My generation is considered to be the first generation EVER to be outlived by our parents. Pathetic? Yes. Surprising? Absolutely not. The mark of my generation is symbolized by instant-food, automobile lunches, and microwave dinners. The fact that some kids cant even discern between a potato and a tomato (God bless Jamie Oliver) is just SAD and completely unacceptable. When my mother was diagnosed with cancer, I could not help but think "what could possibly cause your body to betray itself like this???" On an individual basis, it's a hard question to answer. But on a general basis, I truly think that it is due to a lack of respect for our bodies. Look at the things that we are putting into them! Chemicals upon chemicals upon chemicals! And not only that, but less and less of natural, clean, whole food. We have forgotten how to respect our bodies, and as a result, our bodies have responded. Simply put, something needs to change. We need to change. Change the way we eat, change what we eat, change where we eat, and so on. That’s why I’ve been inspired to start Wellness Wednesdays in order to nudge us all in a direction of a happier, healthier lifestyle.

So. Without further adieu...

Wellness Tip #1

“SHOP THE PERIPHERIES OF THE SUPERMARKET AND STAY OUT OF THE MIDDLE: Most supermarkets are laid out the same way: processed food products dominate the center aisles of the store while the cases of ostensibly fresh food – dairy, produce, meat, and fish – line the walls. If you keep to the edges of the store you’ll be that much more likely to wind up with real food in your shopping cart."

Source: In Defense of Food: An Eater’s Manifesto by Michael Pollan

Just Breathe

Sitting in a local cafe on a beautiful Monday afternoon. A moment to myself, a time where I can just reflect on everything that's happened within the last month and a half. It's taken me a couple days to collect my thoughts together and really think, so this post spans a couple days. Careful kids, this ones a doozy!

It’s a beautiful morning today. The skies are blue, the air is crisp, and the sun is shining. I’m sitting in a coffee shop and find myself finally having a moment to reflect on everything that’s happened in the past month and some. Mom and Dad are probably sleeping away back home, resting and recharging their bodies for a new day. The last couple of days have been a little rough, to say the least. Since our last treatment on Friday, mom has been in quite a lot of pain. I’m not sure if it’s a sign that the chemo is working, or if it’s something else… but calling it fatigue would be putting it mildly as she needed assistance getting out of bed, walking, and getting out of her seat. She is such a strong woman, and it breaks my heart to see someone I love so much in so much pain. If there is a hell, then it is not one of flames and darkness. Hell is seeing someone you love in pain, seeing them suffer and not being able to do anything about it. That,my friends, is hell. It’s crazy how much of a rollercoaster cancer can be. I have never known anything so… terrifying, yet eye-opening, in my entire life. Everyday, I hurt. Some days are easier than others, but the fear and the pain are always there, like a snake that loosens and tightens its cold, suffocating grip around your heart. But at the same time, I feel a new sense of clarity and strength that I did not have before. It’s like I’ve been awakened by something powerful, profound, and meaningful. Almost like coming out of a fog with a newfound sense of purpose and direction. The highs are great and full of a weightlessness that makes you feel as if you’re normal again. With everything that has happened, you are able to truly appreciate and cherish moments like these because you know that a moment without pain and suffering is a moment to be thankful for. But the lows, they are equally as powerful, if not more. They are terrifying, devastating, and heartbreaking all in one. Since we first found out, I’ve discovered so much about my family and myself. I’ve discovered the power of optimism and hope. I’ve discovered how much it takes to draw strength from the deepest depths from within. I’ve discovered how powerful and important love and family are. When one first connects the word “cancer” to oneself, whether it be directly or indirectly through someone you love, your world falls apart. The ground beneath gives away, the sky comes crashing down, and you fall to your knees in such despair that you don’t know what to do, where to go, or even remember something as simple as how to breathe. Breathing is something that is regulated unconsciously and consciously through our body, something that is hardwired into ourselves to ensure survival. The impact of cancer was so devastating that, for about two weeks, I became a temporary asthmatic. I literally could not remember how to breathe properly. Constantly, I would find myself having to take deep breaths, not being able to draw enough oxygen into my system. Every time I drew a deep breath, I would get a feeling where my lungs would not be able to fill up completely. As if they were only able to draw in 80% of what they needed. I truly believed that I had developed a condition, but it was all in my head. The news had been so traumatic that I had become incapable of performing a task so simple and basic as breathing, to the point where I felt I had bruised my lungs from drawing so many consecutive deep breaths. Cancer was suffocating me. Breathing, something we do to draw energy from the world and live our lives, was being affected psychologically by my own body. And I wasn’t even the one with cancer! That is how much of an impact the news had on me. It temporarily persuaded my own body to betray itself, like cancer. When you first hear that cancer has chosen you or your loved ones, life is put into perspective. It forces you to take a big step back and seriously re-assess everything that you thought was important to you in your life. The effect of putting one’s life on a timeline that doesn’t all of the sudden extend into infinity is quite the experience. When we are healthy, we believe that we’re going to live forever, like immortals walking in the land of the dying and the diseased, completely unaffected. Cancer and other life-threatening conditions are myths and fables relegated to another universe. A universe eons away from the one you call home. It shouldn’t take something like cancer for us to wake up and realize how beautiful life is, to cherish each and every moment, to love, to smile, to just breathe. Because the truth is, we all have expiration dates, regardless of whatever foolish conditions you think may make you exempt from this universal fact of life. Life wasn’t created to be stretched over a period of time where we would forget what it meant. It was created so we could pass on our lessons and love, and more importantly, to truly live. When we are forced to realize this, it really is something else. What’s important to remember when you are diagnosed is that cancer is NOT a death sentence. Often times, the situation you find yourself in is what you make of it. It will be a death sentence if you let it become one. Never give up fighting and always look for newfound sources of motivation and inspiration. Today, research, medicine, and treatments are moving at such a rapid pace that a prognosis carries a diminishing level of importance (in my opinion). A doctor gives you a 5-year prognosis and you make it 6 years. So he gives you another 5-year prognosis, and so on, so forth until you’ve made it 15 years past your original prognosis. Whether you have cancer or not, you can't give up. Giving up is not an option. There will always be hope, even in the darkest of times. Hold on to it, believe in it, and use it to drag you out of the fire. This experience has changed me more in one month than any other experience ever has in my entire life. I won’t lie, there are times where a wandering thought will make its way into my head of what life would be like without my mother. My mom. My momma bear. And each and every time, my eyes begin to water and my heart begins to break. When you are suddenly forced to face your mortality face-to-face, it’s a scary thing and life seems so much more unstable and fragile. But you have to learn to wave those things away and stay on a path that will encourage you and support you. There are still moments where I will pause in sheer disbelief that this has become our new reality. I am still somewhat in denial, and I probably will be for quite some time. It's hard a thing to accept, even more so when it is forced on you like it has been on us and every other person affected by cancer. Everything moves so fast and quickly that you have little time to absorb. You're pushed and pulled in so many directions you literally feel like a dog chasing its own tail. Confused and getting nowhere. The world of cancer is vast and full of many unknowns. Time is of the essence. But not so much that you can't afford to pause and collect yourself, because you do have time for that. And it makes a world of a difference. Today (Friday), I met many lovely myeloma “warriors” at a support meeting (the first my family and I have ever been to). I’ve come to realize that there truly are angels on this earth, and some of them come in the form of nurses, doctors, support group members, and many others. These people are true godsends. Their hearts are filled with so much good. It’s amazing and leaves me overwhelmed and speechless. For those finding themselves newly diagnosed, I am truly sorry. This is not something that I would wish even on my worst of enemies. But if there is anything that I can tell you from my own experiences, just remember to breathe. Learn from my mistakes and our victories. I have felt what you feel, and let me tell you, the first 4-6 weeks are undoubtedly the hardest. The waiting. The pacing. The worrying. The news is devastating and traumatic, I know. At the time, we felt the most tremendous feeling of helplessness one could ever imagine. And trust me, trying to get a diagnosis during the holidays ain’t no walk in the park. EVERYTHING IS CLOSED! But know that you can gain control over your situation. Research, research, research and immerse yourself with as much information as you possibly can. And don't let anything discourage you! Information about the drugs you’ve been prescribed (side-effects, warnings, etc.), information about your condition (symptoms, care, etc.), information about nutrition (what to eat and what not to eat), information about precautionary measures (I decided to educate myself on CPR just in case I might need it some day (hopefully not)), and so on. There’s no such thing as being too well-prepared. The very basics for myeloma, that have been working for us, have been LOTS of water (at least 3L/day to help out your kidneys), plenty of fresh (if possible, organic) vegetables and fruits (for fiber and nutrients), daily exercise (to get oxygen into your system), cutting out refined sugars and processed foods (cancer FEEDS on sugar), and plenty of laughs (to keep your spirits up! Which is half the battle). For patients, like my mom, never stop fighting. Find a reason to fight! For your kids, to live a dream, to just LIVE. You will get broken and bruised along the way, but know that there will always be someone to lean on. Surround yourself with other patients, with family members, with friends. Surround yourself with goodness. And if you still find yourself alone or unable to reach out, know that you will always have me. Although I am still very new at this, an open ear needs no experience and you can talk to me about anything. Or, you can do what I did, and make a blog of your own and talk with the universe. Cast out your negative energy into space and share your goodness with others. For those of you who are caregivers, like myself, there will be times where you will feel helpless and other times where you feel like ripping your hair out! It’s ok to feel that way. Don’t feel guilty for wanting to take a breather for yourself. Take a break and spend a day to concentrate on yourself. You cannot help those you love unless you, yourself, are at your best. And for everyone, always remember to just breathe and believe. As I have mentioned, I am still very new at this. My advice may warrant a question or two from some of you, but what I lack in experience, I make up for in my sincerity and drive to overcome this beast with my family and all those fighting the good fight. I will share with you everything that I know so that we can all work together in finding the cure. If we work as a collective nation, we can and we will beat this thing once and for all.

Inter...regional Man!

On our way to our first support group meeting. It should be interesting and I'm curious to see how it's going to go. This will be our third time in calgary this week! I feel like such a jet setter!....minus the jet. Is it possible to collect frequent road miles!? :)
Sent from my BlackBerry device on the Rogers Wireless Network

*Update*

Meeting went really well :) I was a little nervous going into it. I've never been to a support meeting of any kind, so honestly, didn't know what to expect. But everything about it was warm and inviting. The house, where it was held, was beautiful and homely, and the people were incredibly informative and supportive. Not gonna lie, I got a tiny bit emotional (but managed to keep that potential gongshow under wraps) because I was just so overwhelmed. From what? I'm not sure. Maybe it was because I was surrounded by people who...understood what we were going through. Maybe it was because everything just kind of caught up to me. Or maybe it was because we were all on the same path, fighting for ourselves and for each other. Who knows? As the meeting proceeded, I felt myself get slightly annoyed (not sure if that's quite the right word there...) because there were member(s) who seemed like quite the Debbie Downers. I thought to myself, "why is he complaining so much? Why is he being so negative?" etc. etc. But as the meeting continued, it dawned on me that maybe this was the only place where these people COULD vent a little, where they could complain and talk about their experiences with people who would genuinely understand. Because, as great as it is to get support from others, I don't think they will truly be able to understand what you and your family have gone through unless they, too, have gone down that road as well. So I get it now, and I suppose that's what a support group is there for, right? To be able to have someone to lean on, to lift the heavy weights off your shoulders (even if for just a moment), and to release your frustrations out into the world. Everyone is fighting their own battle, but we ALL are fighting the same war. The war to fight off this BEAST and find a CURE.

The Information Age

Tomorrow, or rather today (in about 7 hours! Need to sleep!) is our second appointment at the cancer centre. I’m not exactly sure what we’re going to be doing… More tests I’d imagine. I think we’ll probably go over the biopsy results and make a diagnosis. I’m a little scared… Regardless of the prognosis, we still have to hold our heads high. But I worry about her… She’s fragile and vulnerable right now. Understandably, she is still overwhelmed. But… I just wish she was a little stronger right now. She doesn’t really make too much of an effort to get any information about MM because she’s scared. And I know that it is scary. But what’s scarier is not being informed about a disease that you have. Not being able to make well-informed choices. She has my dad and myself to do that, but… as a patient, I believe that it is her responsibility to know as much as she can about her condition. Certain symptoms and side effects can only be noticed by her. What I mean is, she knows her body the best. My dad and myself won’t always be able to know how she is feeling or if we should be concerned about an ache here or there. I’m trying to get her to understand this. And we’re taking small steps. But it’s… it’s just all very frustrating. This whole situation. There are times where I will just catch myself in a moment. Sometimes, a moment where I can’t help but wonder, “what did we do to deserve this?”, even though I know this disease is not based on good or bad karma. I don’t think it has quite hit me completely yet. I still cannot believe that we’re in the situation that we’re in. Cancer… it’s a disease that’s only supposed to be in newspapers and movies. Not something that we have to endure. It’s incredibly unfair, but life, I guess, is not fair. You just have to make the best with what you’ve got and go from there. There are other moments where… I just get an overwhelming wave of grief. Or perhaps sadness is a better word. It’s a mixture of things. Loneliness, anxiety, depression. I look at my mom, and it just breaks my heart. You really don’t know how good you’ve got it until it’s taken away. Now, the simple things are the things that we hold onto the tightest. Family time, smiles, laughter, walks. Every time I see her laugh and smile, it just means so much. I know that there are people that I can talk to, family members, friends, support groups. But I feel like I can’t talk to people. Or maybe I’m just scared to… We don’t want this getting out because if it did, everyone in this town would know about it. And that’s not the kind of attention and focus we want right now. But I wish I could just talk to my cousins or friends about it right now and just… be able to pour my heart out. Because this experience has been like no other. My heart has never ached so hard and… it’s just… I’m so afraid… I’m terrified. I try not to think about it, but I can’t live without her. She’s been the glue and sunshine in my family and has always been in such good health. This whole thing came completely out of nowhere, which is why I think it affected us so much. I mean, cancer would have quite a strong effect on anyone. But… yeah.

So, in response, I try to gather as much information as I can. In nutrition, in side effects, in whatever way I can help to the best of my abilities. Some of the books I’m reading have confused me a little. They’re views conflict with the views of the “standard of care” medical community. While chemotherapy works by destroying cancerous cells, it also takes out the good ones as well. The views and approach that these doctors and authors take is one where you use your body’s natural defenses to battle, or at least maintain, cancer. These perspectives are on opposite sides of the spectrum, and to a patient or a family member it’s all very confusing. On one hand, you have a system that has scientific backup and research going into it. On the other, you have another system that breaks it down into the basics, using nutrition to fight your battles. What irks me is that there are claims that this business of cancer is hugely profitable, and as such, the major pharmaceutical companies have no real incentive to actively find a cure. These are the pharmaceutical companies that fund and train students in med school, our doctors of tomorrow. What they say, goes. But… could people really be that.. evil? Millions of people have died from this disease, and it would be tragic if their lives could have been considerably different if money wasn’t in the picture. Are these pharmaceutical companies really looking out for our best interests? One must remember that they are running a business… All this information is so confusing and leaves you torn on which direction you should go. Because whatever decision you make will literally be a life-or-death decision.

Currently, i'm primarily reading two books: Knockout: Interviews with Doctors Who Are Curing Cancer and How To Prevent Getting It in the First Place by Suzanne Somers, and Anti- Cancer: A New Way of Life by David Servan-Schreiber, M.D., Ph.D.

Both have been incredibly informative. I think being a patient (or a family member of a patient), you have to be willing to keep your mind open. You have to be willing to listen to what others have to say. You don't have to necessarily agree with them, but at least listen. Both of these books place an emphasis on nutrition and fighting cancer with your body instead of chemotherapy. There has been a lot of backlash with this type of approach, especially directed towards Somers, but... Is trying to live healthy, organically, and as naturally as possible really such a bad thing? Even if you do decide to choose conventional methods, I think people should pause and take a moment before knocking this p.o.v down. When you really break it down, these approaches are all about leading a healthier lifestyle. Because changing our eating habits and lifestyle (this means more exercise, less t.v.), it's not going to hurt us. You don't have to agree with the treatment plans that have been highlighted, but the basics won't hurt. Anyways, there are a couple of doctors from Mrs. Somers' book that I have become interested in. Has anyone heard or had any experiences with Dr. Stanislaw Burzynski, Dr. Nicholas Gonzalez, Dr. James Forsythe, or Chemosensitivy tests? Your input, comments, or even thoughts would be helpful to me and others that read this post!

So, to finish off. Here are some random facts that i've learned from reading so far:

- Tumeric (curcumin) is the most powerful natural anti-inflammatory agent out there. Which is good because it inhibits angiogenesis (which is the formation of blood vessels). This is important because cancerous tumors NEED these vessels to supply them with blood flow in order to survive.

- "To be assimilated by the body, turmeric must be mixed with black pepper (not simply with peppers). Ideally, it must also be dissolved in oil (olive, canola, or linseed oil preferably). In store-bought curry mixes, turmeric represents only 20% of the total. So it's better to obtain turmeric powder directly"

- Cruciform vegetables (cabbages, broccoli, cauliflower, bok choy, etc.) contain powerful anticancer molecules that are capable of detoxifying certain carcinogenic substances, promote the suicide of cancer cells, inhibit angiogenesis, etc.

- Avoid boiling cabbage and broccoli. Boiling risks destroying these powerful anticancerous molecules. Instead, cover and steam or stir-fry rapidly with olive oil.

- Tomatoes contain a substance called lycopene that leads to longer survival rates for prostate cancer patients. However, they must be cooked in order to release these nutrients. Moreover, olive oil improves their assimilation.

- Soy isoflavones block the stimulation of cancer cells by sex hormones and intervene by blocking angiogenesis. However, isoflavone supplements have been associated with an aggravation of certain breast cancers, but this is not the case for soy taken in food.

- ** The genistein in soy can interfere with Taxol. While awaiting confirmation of this interaction from human studies, it is advisable not to consume soy-based foods during chemotherapy with Taxol. Stop several days before, and start again several days after treatment**

- Green Tea contains substances that reduce the growth of the new vessels needed for tumor growth and metastases. It is also a powerful antioxidant and detoxifier. Note that black tea is fermented, a process that destroys a large portion of these anticancer substances. Oolong tea has undergone a kind of fermentation midway between green tea and black tea. Decaffeinated green tea still contains all its polyphenols (anticancer substance).

- Japanese green tea (sencha, cyokuro, match, etc.) is even richer in EGCG (another anticancer substance) than common varieties of Chinese green tea.

- Green tea must be steeped for at least 5-8 minutes - ideally ten minutes - to release these substances.

These facts noted above are just a few of the many that I learned from reading Dr. Servan-Schreiber's book. I highly recommend reading it, if not for alternative treatment purposes, then for tips on how to lead a healthier life.

However, on one note. I had discussed some of these with our oncologist and he had told me that a recent study was published where green tea had actually shown to COUNTERACT chemotherapy. I'm not sure what type of chemo, specifically, (we're going to be starting Velcade very soon, so I assume this is one that is affected by it) so I think it would be best to work with your doctor and see what he/she has to say.