A place where I can chronicle my family's journey through cancer. A place where WE can discuss our concerns. A place where WE can inspire each other. A place for hope.

Wednesday, April 28, 2010

Wellness Wednesdays






Ok so i've decided that one tip is simply not enough, so WW will now include 5! Enjoy :)

#2: Eat only foods that will eventually rot: What does it mean for food to "go bad"? It usually means that the fungi and bacteria and insects and rodents with whom we compete for nutrients and calories have gotten to it before we did. Food processing began as a way to extend the shelf life of food by protecting it from these competitors. This is often accomplished by making the food less appealing to them, by removing nutrients from it that attract competitors, or by removing other nutrients likely to turn rancid, like omega-3 fatty acids. The more processed a food is, the longer the shelf life, and the less nutritious it typically is. Real food is alive - and therefore it should eventually die. Source: Food Rules by Michael Pollan

#3: Eat some foods that have been predigested by bacteria or fungi: Many traditional cultures swear by the health benefits of fermented foods - foods that have been transformed by live microorganisms, such as yogurt, sauerkraut, soy sauce, kimchi, and sourdough bread. These foods can be a good source of vitamin B12, an essential nutrient you can't get from plants. (B12 is produced by animals and bacteria.) Many fermented foods also contain probiotics - beneficial bacteria that research suggests improve the function of the digestive and immune systems and, according to some studies, help reduce allergic reactions and inflammation. Source: Food Rules by Michael Pollan

#4: Eat animals that have themselves eaten well: The diet of the animals we eat strongly influences the nutritional quality, and healthfulness, of the food we get from them, whether it is meat or milk or eggs. This should be self-evident, yet it is a truth routinely overlooked by the industrial food chain in its quest to produce vast quantities of cheap animal protein. That quest has changed the diet of most of our food animals in ways that have often damaged their health and healthfulness. We feed animals a high-energy diet of grain to make them grow quickly, even in the case of ruminants that have evolved to eat grass. But even food animals that can tolerate grain are much healthier when they have access to green plants - and so, it turns out, are their meat and eggs. The food from these animals will contain much healthier types of fat (more omega-3s, less omega-6s) as well as appreciably higher levels of vitamins and antioxidants. (For the same reason, meat from wild animals is particularly nutritious). It's worth looking for pastured animal foods in the market - and paying the premium prices they typically command if you can. Source: Food Rules by Michael Pollan

#5: Cruciform Vegetables: Cabbages (brussels sprouts, bok choy, Chinese cabbage, broccoli, cauliflower, etc.) contain sulforaphane and indole-3-carbinols (I3Cs), which are powerful anticancer molecules. Sulforaphane and I3Cs are capable of detoxifying certain carcinogenic substances. They prevent precancerous cells from developing into malignant tumors. They also promote the suicide of cancer cells and block angiogenesis. In 2009, at the Cancer Research Center of the University of Pittsburgh, biologist Dr. Shivendra Singh and his team studied the impact of sulforaphane - an antioxidant contained in cruciform vegetables - on prostate cancer in mice. They made two radical new discoveries. First, consumption of sulforaphane three times a week considerably increases the action of NK cells against tumors (by more than 50%). Second, tumor-carrying rats that consumed sulforaphane were shown to have half as much risk of developing metastases as those that did not. Take note: Avoid boiling cabbage and broccoli. Boiling risks destroying sulforaphane and I3Cs. Source: Anticancer: A New Way of Life by David Servan-Schreiber.

#6: Ginger: Ginger root acts as a powerful antiinflammatory and an antioxidant (more effective than vitamin E, for example) and has protective effects. It acts against certain cancer cells. Moreover, it helps reduce the creation of new blood vessels. A ginger infusion tea also helps alleviate nausea from chemotherapy or radiotherapy. Source: Anticancer: A New Way of Life by David Servan-Schreiber.

Monday, April 26, 2010

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"

Sunday, April 25, 2010

NOOOOOOOOOO!

Had some technical difficulties sooo let's pretend this was posted yesterday morning shall we?
Sent from my BlackBerry device on the Rogers Wireless Network

Friday, April 23, 2010

To Die or Not to Die

Recently, there has been an issue that I have debated writing about just because of how controversial it is. One day I’ll write a couple paragraphs on it, the next I’ll scrap everything. It’s a subject that I feel leaves many of us divided in our opinions towards the matter. Lately, however, in light of some current events, I’ve decided to go ahead with it. Not only because I use this blog as a place to voice my thoughts and opinions, but also because I do believe this issue is a relevant one that needs to be addressed. Besides, controversy can be good. It’s an opportunity for us all to think and speak. In addition, this subject has been at the back of my mind for a couple weeks like a secret brain ninja judo-chopping my meninges, fighting to be released! Not so much fun, as you can imagine…

The last issue of Maclean’s magazine covered an interesting topic that led to its purchase for further reading. Basically, it discussed the debate between those against and those for assisted suicide. See what I mean? The article personified the issue through its profile of a lovely little lady by the name of Bernice Packford from Victoria, BC. It read, “She’s happy. She’s healthy. She wants to die. Should we help her?” Interesting…

First, some important information. Although they are often associated with each other, it’s probably important, in matters like these, to distinguish the difference between assisted suicide and euthanasia (because there is a big difference). According to the article, “assisted suicide involves the passive participation of a medical professional in an individual’s decision to take their own life. This may take the form of dispensing a lethal pill or providing advice. In either case, it’s the patient who ultimately takes the decisive action. Euthanasia, in contrast, involves a positive action on the part of a doctor to end a life at that person’s request – by administering the fatal dose, for example.” So basically, the difference between the two is based on who takes the primary action in the ending of a life. It’s a little ironic though. If euthanasia were to be put into effect, those who were committed to saving lives would also now be committed to ending lives. God, is that you?! The magazine expresses these sentiments as well. “Of the two options, euthanasia is easily the most disturbing. Having taken an oath to ‘do no harm,’ it is intrinsically wrong for a medical professional to play an active role in the death of a patient”.

Now, this is where Bernice comes into play. Her argument, as you may have guessed, is “pro” in the death with dignity debate. She states, “I am in good health. I’m not suffering from an illness that will be eventually fatal”… “I’m tired and I do suffer from congestive heart failure [which robs her of energy and requires her to use a walker]. I can have a stroke. I’ve had a stroke, and I recovered from that. I’m facing imminent sickness or a stroke, which will leave me conscious and helpless. And that thought fills me with horror.” Essentially, what Bernice is fighting for is the right to die on her own terms, to die with dignity. This would allow her to have her family with her on the “big” day and ultimately, die in peace. Now, this is the part where I am often left sitting on the fence. No one can blame this woman for wanting to go out with dignity. It’s not so much Bernice that I am opposed to, in fact she seems like a very lovely woman and a strong contributor to society. Instead, it is the act and the justification of suicide that this movement advocates that I am against. Regardless of what I think, however, it’s important to acknowledge that these are very muddy waters we tread. If legislation in support of assisted suicide were to pass, where would the line be drawn? I can understand the justification from those in considerable amounts of pain or vegetative states, but for someone in relatively good health to so readily ask for death? As others have mentioned, what about those who are depressed and in other altered states of mind? If such legislation were to pass, it would send a message out to people, out to our kids, that suicide would be a justifiable action to pursue. I’m sure many of you have seen headlines boldly displaying the prevalence of bullying-related suicides? What about those kids? I can only IMAGINE how many ways such a legislation could go wrong, or God forbid, abused. Despite these reasons, on a more personal note, I feel like this whole debate screams “ungrateful”. Ultimately… I feel like this issue is a huge slap in the face. It is a cold, hard, and cruel smack to everyone out there fighting to save their lives and the lives of their loved ones. It is offensive to me because I know people out there in the world and people in my life that are fighting WITH EVERY OUNCE OF THEIR BEING to stay alive, hoping to live just another day. And in the meantime, others who are perfectly healthy and, really, have nothing to complain about, are out there trying to fight for their right to end the very thing we are working so hard to save. Talk about a kick when you’re down. It’s like…someone working years and years to build something beautiful only to have it destroyed by someone who won’t have a second thought about it. Bad example, I know.

I’ve talked to others to get their opinions on the issue, and was actually quite surprised to hear from many that they believed suicide was a justifiable “way out” – excluding those in considerable amounts of pain and vegetative states. I’m sorry but I am STILL having a hard time grasping that concept. Yes, I understand that many people feel like there is no way out, but I truly do not believe that suicide is ever the option! Would you consider it such a justifiable action if it were your family member or friend in the position? No, you wouldn’t ever want them to give up.

Now, I want to be clear on something before anyone gets too worked up. When people decide to go into hospice, to me, that is not giving up. In fact, it is the complete opposite. I think all cancer patients are true fighters. Ever since we were diagnosed, I have never met more courageous, spirited, and supportive people than those affected by this disease. When a person makes the decision to go into hospice, I think that, in and of itself, is a tremendous show of strength and bravery. It is not giving up, it is a shift in focus. These brave men and women have instead decided to fight for quality of life. It must be an extremely hard decision to make and one that I don’t think I would ever have enough courage to muster up. Kudos to them.

On the magazine’s site, another person brought up a good point:

However, a large number of people that do commit suicide would probably regret having done so. How do we know that? Because there are a large number or people who have been prevented from committing suicide, most of whom regret their suicide attempt. Public policy must assume that people who want to kill themselves (I suppose we can make an exception for the terminally ill) are irrational, and don’t really want to do so. Why? Because it is usually true, and, frankly, if somebody really and truly wants to die, they can easily succeed. What Bernice Packford wants is for somebody else to take responsibility for her life. She wants to institutionalize and bureaucratize suicide. One might reason that she would feel guilty if she killed herself on her own. She damn well should, because suicide is a profoundly painful experience for everybody who cares for her. Far more so than death, I should add, which has no assocations of guilt. Suicide is illegal, at least for healthy individuals. But it is also unenforceable if somebody really wants to go through with it. That is the way it should be. Those that truly want to die, can easily succeed. At the same time our public policy response must be to try with every fibre of our being to keep people alive.

When it really comes down to it… I just feel like we are taking too many things for granted. Life is precious, life is valuable. It pisses me off that, as my mom (and millions like her) fights so very hard for her life (to the point of sheer exhaustion), there are those out there that would try to pass a law to end lives. It’s a deeply complicated and emotional issue. I know some of you, perhaps many of you, will get upset over this and I can respect that. This is just me being completely honest and sincere to myself and those reading this blog. I feel like I’m ranting now, so I’ll let it soak.

Provided is a link of the article featured in Maclean’s: Bernice

*UPDATE*

Ugh! I was reading the Globe and Mail today and found an article about a Minnesota man by the name of William Melchert-Dinkel, 47, who was charged for "aiding" in the suicides of two people via online chat rooms - apparently for the "thrill of the chase". What is wrong with people?! According to Melchert-Dinkel, he had entered into 10 or 11 suicide pacts in the past. Most recently, he had convinced an Ottawa university student, Nadia Kajouji (who, might I add, was battling DEPRESSION), to jump into the frozen Rideau River in March of 2008.

Now, when I mentioned previously about how legislation in support of assisted suicide could go wrong or be abused, this is exactly that kind of situation. How does one truly differentiate between assisted suicide and perhaps a more devious intent or ensure that it does not conflict/contradict with other existing laws? In regards to this case, conviction is unclear because of "jurisdiction, its online nature, and the fact that the Minnesota law against aiding in a suicide (which applies to anyone who 'advises, encourages, or assists another in taking the other's own life') is also viewed as untested, and vulnerable to a challenge under U.S. First Amendment free-speech laws."

ARE YOU SERIOUS???

You can read the full article here

Thursday, April 22, 2010

Decisions, Decisions

So.
It's been a long week. I think we've been in and out of Calgary like four times in the past five days. Aside from the usual 2/wk treatment schedule, we also decided to book an appointment with a couple um..alternative/integrative doctors. My mom is just starting to feel some of the common side-effects associated with the chemo that she's been receiving, that is, some slight tingling/numbness in her fingers and fatigue. We decided to go see an alternative doctor to COMPLEMENT our current treatment process so as to strengthen and sustain her body while she receives chemo. This would mean things like nutrition, detoxification, etc. Right now, we're torn though. We saw two specialists in Calgary, each with very different approaches. On one hand, there is the doctor that is very warm and comforting that has already treated myeloma patients with quite some success (apparently). On the other hand, there is the doctor who is...quite frankly, a bit of a douche. He's not the friendliest of people and our consult seemed to lack some direction (can you say "awkward silence"?). On top of that, in the midst of my research, the good people over at ratemds.com pretty much felt the inclination to rip him a new one. So that was reassuring. HOWEVER, this man has a very impressive list of credentials and resources and seems to be quite thorough in his testing. He's also treated about 3 myeloma patients in the past and oh yeah, worked with Deepak Chopra (OoOoh! Wait...is that relevant?) So, do we go with the kind, reassuring doc with (I have to word this carefully) less available resources (contacts, tests, etc.) or the ...either-not-very-friendly-or-socially-awkward doctor with the impressive list of credentials and support? Re-reading this, the answer seems like it would be an obvious one to go with the former. From my experience, a reassuring and comforting doctor can make a WORLD of a difference to his/her patients. But on the other hand, what is our biggest priority here? I think just the general fact that we're going down this path is a giant leap of faith. There isn't much hard evidence in the nutriceutical area (because companies cannot patent a natural substance and thus, make CASH MONAYYY) so there arises a lot of "mays" (ex. this may reduce tumors, that may speed up recovery, bla bla bla). So, as i'm sure every cancer patient knows, there are no guarantees. One thing that I did like that both doctors said was that they 100% believed that the best form of treatment would be a combination of both conventional (chemo) and alternative medicine. So it's good to see that they aren't entirely biased.

Decisions, Decisions. What's a confused, optimistic, cancer-stricken family to do??? We've got a lot of thinking to do andddd i'm rambling (5 cups of coffee and 5 hours of sleep today! *twitch). I'll keep you updated with what we decide to do!

Wednesday, April 21, 2010

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

Friday, April 16, 2010

A Call to Arms

Hello everyone!

I have been thinking for a little while of creating a site dedicated to survivor and success stories to serve as a platform for hope and inspiration to others. I created a second blog, called Humanity for Hope, and would LOVE and ENCOURAGE any of you reading to submit a story to help others. Here is the description:

Hello friends,

My name is Lance. I have been thinking for a little while about putting together a site with a collection of survivor and success stories to serve as a platform for hope and inspiration.

Drawing from personal experiences, a cancer diagnosis can feel like an almost certain death sentence. For me, that time was undoubtedly the darkest moment of my life and that of my family member's lives. There is a certain feeling of hopelessness that one often feels during this time, it is a deep hole that sometimes seems impossible to climb out of. However, through this site, we can work together towards building a place where that light of hope we once thought distinguished can be ignited again. A cancer patient's life is full of many highs and lows, as I am sure many of you have experienced. If we can somehow minimize these lows and help lift each other up through these stories of hope, I truly think we could open up a world of good. We often place such a strong emphasis on the importance of drugs and science, yet sometimes forget the pure strength that hope can provide. Hope, in and of itself, can be one of the strongest forms of treatment that we can give ourselves. Sometimes, it is all that we need.

Together we can help push each other forward, because it is important to always remember that we are never alone on this journey. Tell us, tell the world, your story. Together, we can all help lift each other up. Out of the darkness that is a diagnosis, that is depression, that is disappointment. I called this blog Humanity for Hope because I envisioned it a result of a united front working, fighting, for hope. I have discovered just how beautiful and strong this community is. We laugh. We cry. We inspire. We push. We rally. We support. And we fight with a fierceness comparable to legends. Our bravery and our courage is truly quite remarkable. We, a group of people so weakened and devastated by disease, find strength in each other to conquer andfight our greatest fears. Consider this my battle cry against hopelessness and despair, something that we can all work together to extinguish. I urge you to join me in the fight to end cancer once and for all!

Please send your stories to: thecancerdiaries@live.com (Header: Humanity4Hope)



I hope to hear from you all soon! Together we can inspire and raise each other up out of the dark!
L

Wednesday, April 14, 2010

Having A Moment Here...

Today was the first day that I've cried since diagnosis (I think?) Usually I'm pretty good at analyzing my own feelings and getting right to the source of the problem, but today... I'm not sure. I think just...the whole weight of the situation became a little too overwhelming for me. Everywhere I go, I feel like there's this pressure weighing down on my shoulders, and I know its something that won't go away until this situation is over. So I guess I better buckle up. I'm just so so so frustrated. Maybe more so with how my mom is dealing with this. Anytime there is a SHRED of non-encouraging news (not necessarily discouraging), she sinks into this place that one could probably accurately describe as depression. I'm trying SO hard to lift her up, but all the spirit and enthusiasm for life seems just totally drained from her. And then that gets me upset and snappy because all I want to do is shake her and tell her to snap out of it. But then I end up feeling bad afterwards and so on, so forth. It's an incredibly vicious cycle. This whole situation is such a complete fucking nightmare and sometimes I still have trouble grasping reality. I am just EXHAUSTED and honestly am having trouble thinking how much more I can take. But then, I remember just how much I love my mom and how incredibly hard this must be on her, which in turn helps ME to snap out of it. It took me a good little bit to get my shit together, but I got there and am now back on the horse. I had my moment, and now I'm ready to kick some butt. I guess the reason why I'm posting this is because... At the end of the day, its the love that we have for our loved ones (regardless of whether we are the patient or the caregiver) that gives us the strength to go on. Always remember this. So now you'll have to excuse me, I need to go and give my mom a hug.

L

Sent from my BlackBerry device on the Rogers Wireless Network

Monday, April 12, 2010

Standing Ovation

Also,
Another member of the ListServ posted this earlier today. I love it!
There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head.  'Well,' she said, 'I think I'll braid my hair today.' So she did, and she had a wonderful day.  The next day she woke up, looked in the mirror and saw that she only had two hairs on her head.  'Hmmm,' she said, 'I think I'll part my hair down the middle today.' So she did and she had a grand day.  The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.  'Well,' she said, 'today I'm going to wear my hair in a ponytail.' So she did and she had a fun, fun day.   The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.  'YEAH!'  she exclaimed, 'I don't have to fix my hair today!'
Attitude is Everything! 
Hair loss is a common side-effect of chemotherapy seen in cancer patients. Although many will often say that "Hair is just hair, it'll grow back", the issue can often run much deeper. Hair is not just hair, it's something that is a part of our personality, like our laughs and our smiles. The hair loss associated with chemotherapy is a strong symbol of a cancer patient's plight. Because momma bear is due for a stem cell transplant sometime in the summer, this is an issue that I have been thinking of quite frequently. Before all this stuff happened to us, as someone viewing from the outside-in, I used to associate the hair-loss as a sign of frailty and sickness. However, my perspective on the issue couldn't be any more different now. Now, whenever I see a patient suffering from chemotherapy-induced hair-loss, I see it as a true sign of strength. This might sound a bit awkward, but I really do think that this image, this "symbol", is actually quite beautiful. To see someone fighting so hard and willing to do whatever it takes, it is a sign of bravery, strength, and perseverance. One that deserves a standing ovation.

We're Making Progress!

For those of you who don't actively follow the ACOR Myeloma Listserv, a member just recently posted an article in regards to the progress that treatment has made over the last ten years.

The article states that, about ten years ago, the median survival of myeloma patients was about three years. THREE!!! Scary stuff... However, with the sheer speed that research and treatment have made, that number has increased to about ten years. That's more than a 300% increase! This just goes to show that one can never place too much importance on a prognosis (I think they're ridiculous) because of how fast medicine is evolving! It's a great number, but still not good enough. We have to work together in fighting this beast off once and for all! The article also highlights the importance of clinical research, stating that this improvement in patient survival would not have been possible without them.

Here's the link if you want to read further!

Wednesday, April 7, 2010

The 8 Commandments

For the last week, i've been thinking about the top lessons learned from everything that has happened so far. We've come a long way, and still have yet a ways to go, but you can never forget that one small step can turn into a mile. To say that this whole experience has been devastating would be an understatement. But, in many ways, it has also been very inspiring and opened my eyes to a world of good. These are my "8 Commandments", my most important lessons-learned up until this point, so far.

1. ADVOCATE: Stand up for yourself. This is your body, your life, and your responsibility. Don’t just sit there and expect an answer from your doctor. As brilliant as they are, our doctors do not know everything. New publications and studies are being published everyday. It is difficult for doctors to juggle patients, conduct research, and be on top of all the newest findings at the same time. Seek information and be active in your recovery. Question your doctor if your instincts tell you to do so. In general, if you have to go to the doctor more than once for the same reason, something might be up. In the end, this is your body and no one else’s. It is YOUR responsibility, and ultimately, you who will pay the consequences if you don’t do something about it. Here is a good example: Recently, there has been some discussion about the administration of Aredia and other biphosphonates on the ACOR ListServ. You should be receiving these medications in a minimum of 3-4 hours (the longer the better), and yet some nurses will only do so in a maximum of 2 hours?! That is NOT ok! As a patient or a caregiver, DEMAND more time. Stand up for yourself, there are no excuses.

2. CONTROL: In a time where you seem to lose your footing, gain control of your situation. Educate yourself. Seek information about your situation and how you can deal with it. Learn from other people's mistakes and follow in the path of their successes. There is nothing worse than to be unaware and uninformed about your disease. Utilize the resources that the world has to offer. Forums (ACOR LISTSERV!!!), Blogs, etc.

3. RESPECT: Respect your body, listen to your body. If you're tired, rest. If you're sad, cry. If you're happy, rejoice. Don't bottle up your emotions. And break it down to the basics: Eat healthy, exercise, drink water, and laugh. Respect your body, mind, and soul. Respect yourself.

4. BREATHE: Try to take yourself out of your situation and calm yourself. It might not be as bad as you think. Emotions can cloud judgement and cause you to make irrational decisions and receive unnecessary stress. This was a big lesson for me when we were first diagnosed. Just take a second and calm yourself. Don’t just inhale and exhale, breathe.

5. REJOICE: Despite the situation you may find yourself in, there is still much to celebrate and be thankful for in life. Be thankful for a beautiful day. Be thankful for a good night's rest. Be thankful for a good laugh and the fact that you had the opportunity to experience it. Be thankful for your loved ones. Be thankful for those moments of little or no pain. These are all things we can truly be grateful for. It's easier to remember that the world isn't always as bad as it may seem if you remind yourself of the little blessings and miracles that happen everyday. It's not easy... But it can help you move mountains if you let it.

6. SUPPORT: Surround and immerse yourself with those who will help lift you up. Whether this includes a random stranger or a close friend is up to you. Hey, why not both?! Don’t feel guilty if you need to ask for help. This is your life, and nothing (NOTHING) is more important than that. A word of advice, try seeking support from those outside of your immediate family. Sometimes, the stress of the situation is just…a lot. Keeping all that emotion balled up within your family can lead to a lot of bickering, additional stress, etc and end up doing more harm than good. Cast those emotions out into the world!

7. MOTIVATE/INSPIRE: Find ways to pick yourself up by discovering newfound ways to motivate and inspire yourself. Lets face it, the road to recovery for a cancer patient has a LOT of highs and lows. There are days where you will be so filled with joy you literally don’t know what to do, and others filled with disappointment. Learn how to pick yourself up and get back on that horse! The success stories of other patients is immensely motivational and inspirational.

8. CHOICE: In the end, you are given a choice. You can either choose to go around feeling sorry for yourself or you can choose to live your life, despite its setbacks, and fight this beast off with everything that you, your family, your friends, and supporters got (remember, you are never alone!). The choice is yours.

Some of this stuff might seem a little repetitive and redundant. But to me, it shows just how important these things are to me. I might give the impression of some happy-go-lucky perk; I can assure you, I am not. I have my dark days and my low-points. Lots of them. But these are things that I try to work towards, not grasp immediately. They are things that keep me honest with myself and pull me out of the fire.

If there are any other "lessons" that you have learned, I would love to add them to this list! Together, we can all help each other out and push ourselves forward! Shoot me an e-mail: thecancerdiaries@live.com with your information and i'll make sure to add it to the list!

Until then, best of wishes to all of you

L

Sunday, April 4, 2010

Believe


So, did any of you catch the 20/20 episode that aired a couple nights ago? Wasn’t it FASCINATING!? It was about miracles, and just so happened to be right on time for Easter weekend! One of the profiles featured on the episode involved a woman named Audrey Tugochi, a retired school teacher who was diagnosed with a rare form of cancer called Liposarcoma, a cancer that arises in the fat cells of our body. Upon diagnosis, she was instructed to start chemotherapy but refused and instead, opted to pray to Father Damien De Veuster.

This is probably an appropriate time for a little history lesson. Father Damien De Veuster was a Belgian priest known for his work with leprosy patients in Kalaupapa of Molokai Island in Hawaii. It was an island where lepers were basically shipped and banned to for fear of contamination. Father Damien was the first to go to this island voluntarily, knowing full well that he would contract leprosy. While experimenting on himself for possible cures, Father Damien died of the disease in Molokai in 1889.

Now, back to Ms. Tugochi. Without any chemotherapy or other treatment, except that of faith, Audrey’s cancer receded and completely disappeared. Umm…WHAT?! Turns out I wasn’t suffering from premature hearing deficiencies because I had heard that correctly. Disappeared. Amazing. The Vatican later concluded that this was an official miracle, leading to the canonization of Father Damien, or rather, Saint Damien. Now, this is by NO means, an easy task. There are very, very strict and rigorous guidelines that the Vatican undergoes before officially labeling an event as an official “miracle” and canonizing an individual.

For an event to be recognized as an official miracle, a team of doctors and experts (not necessarily catholic, but the most qualified) chosen by the Vatican are hired to examine cases deemed as miracles. In addition to this, the Vatican also enlists what is called an “advocatus diaboli”, or in popular terms, a Devil’s Advocate, to present reasonable facts against the case and promote the “truth”, whatever that may be. Or, as Michael Shermer, head of the American Skeptics Society states, be “Mr.Skeptic”. The criteria that these individuals use for a confirmed and official miracle state that the miracle be: Lasting, Perfect, Instantaneous, and Scientifically Inexplicable. In order for an individual to be canonized as a saint, there must be proof of the intercession of at least two miracles by said individual. Interestingly enough, canonization does not make someone a saint. Rather, it is only a declaration that the person is a saint and was a saint even before canonization. So basically, it is a process of recognition, not certification.

I’m not a hardcore follower or anything, but I do believe and have faith in Christianity. Whether or not you believe in the same higher power as myself, I do think that believing and having faith in something is important. For many of us, it gives us something that sometimes science and medicine cannot. Hope. The closing segment of the episode put it nicely. and yet the overwhelming belief of miracles persist. Perhaps it is only human to yearn for something more powerful, something to save us or the people we love in our times of need. For those who do know, these modern miracles are part of faith that has sustained them”.

Moral of the story? Well, as Journey once wisely sang, "Don't stop believing. Hold on to that feeling". Choose something to believe in and don't ever let go! Believe that you'll get better. Believe that they'll find a cure. Believe that you'll see the day your grandkids are born. Whatever it is, just believe.

The following are links to the 20/20 episode and a newspaper article that featured Audrey Tugochi’s miraculous recovery.

Miracle

Audrey Tugochi

Happy Easter everyone :)


**UPDATE**

I was reading the paper today while we were in for treatment and just so happened to discover that the National Post also did a piece similar to the one featured on 20/20. Ch-Ch-Check It Out!

Thursday, April 1, 2010

Score.

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An Interesting Day...

Ok so today marks the second half of cycle four! Wowzas! Time sure flies when you're...bizzayyy! When I think about where we were three months ago compared to today, well... We've come a long way. We're in a better place right now, that's for sure :) it's a lonnng road, but we're on our way to recovery! Baby steps people, baby steps. Before you know it, you'll be better and on that ever-elusive cruise around the mediterranean or wherever you choose to go during that PRECIOUS treatment-free time off (be it one year or ten years) that you worked so hard to achieve. We're about 50% down in those naughty, naughty cancer cells as compared to diagnosis! Normally by now, we would expect our numbers to be a bit lower. However, as the good doctor explained, we started at a very high level of those pesky cancer cells, so obviously, it might take one or two more cycles to get to where we want. As far as I'm concerned, as long as the numbers are going down, that is a reason to celebrate :)

A few...interesting moments from today. First off, I'm convinced that curcumin has some sort of positive effect on a myeloma patients body, and there's a lot of evidence out there to support it. But apparently, not enough. Our doctor is pretty awesome, but he's a little skeptical when it comes to these things. At least that's the impression that I get... Anyways, we met with him today (even though it's not our week off, which I will explain shortly), so I had decided to prepare a care package of sorts abundant with lots of curcumin goodness. For the last two days, I read what felt like a million papers and journals on curcumin so that I could try to convince him in some way. I even made side-notes and placed them all alphabetically in a pretty binder to make it easier and more appealing for him to read. I showed it to him, and he didn't even take it! To say I was a little irritated would be a slight understatement... I was not impressed. He said he had read the studies and unless there had been human studies, he was not comfortable using curcumin. Fair enough. But, here's the thing. There HAVE been human trials! I don't know if he was trying to protect his ego or something, which would be absolutely ridiculous if that were the case, but he was not very receptive. *SIGH*. Guess ill just have to keep pushing. The effects of curcumin have been quite remarkable in many MANY aspects. Hopefully more evidence in HUMAN studies will come out to support this little miracle, NATURAL drug.

Ok, so story number two. Last week was our week off, which meant that we had our consult with our doctor as well. The thing is, we didn't see him, we saw the nurse practitioner. She was super nice and everything, but...the way she spoke was a bit confusing and roundabout, so we ended up leaving with more questions than when we had come in with. Needless to say, I was not impressed. We only see him once every three weeks, so I don't think that its unreasonable to request him specifically. I realize that these doctors can get VERY busy, but we would gladly re-schedule or wait an extra hour or two to talk to him. Anyways, I sent an e-mail with these sentiments, which led to him meeting with us today. I meant no disrespect, I was just standing up for my mom. We deserved to see him. So, with that being said, I'm prettttty sure the nurse practitioner was well aware of my e-mail as was evidenced by the stink-eye whenever I saw her..... But maybe it's all just in my head :)

Last bit of info. Today's CBCs were pretty good, actually they were really good! Momma bear's WBCs went from 5.2 to 8.3 (normal range= 4-11), platelets from 239 to 299 (nr=150-400), and neutrophils from 3.0 to 7.0 (nr=2-9). And this is chemo week! Sooo... Its a little weird that the numbers went up instead of down... They're great numbers, but I'm a little concerned that it might be a sign of infection or something... I asked the nurse and she said that its only a cause for concern if they're way above the normal range, so I'll take her word for it... But, assuming and PRAYING that these are just good numbers and nothing else, that is REALLY GOOD news :) (how awful would it be if someone was playing some cruel april fools joke on us?!?!)

All in all, today is a good day :)

I will now proceed to some "Don't Stop Believin" courtesy of the kids from Mckinley High (surrrrrious GLEEk right hurrr) and chinese food!
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