Truth?

When a pharmaceutical company tells you they "aspire to cure cancer", do you really believe them? Color me a cynic, but wouldn't that be the worst business model ever? You'll have to forgive my attitude. I feel like I'm bipolar today, going from disappointed and letdown to inspired and motivated to frustrated and scared, and then back again. I just learned that my mom may need to go through another transplant, and before Christmas too. This has NOT made me a happy camper. And while I realize that this is the case for many others, that doesn't change the fact that it completely fucking blows. To go through that procedure AGAIN!? How did this day go from hoping everything we've done would be enough to wash, rinse, **REPEAT**?! And to clarify on my previous post, I knew something was off with my mom's biopsy numbers... And now I know why. Her most recent biopsy before the last showed 16% and from that time to transplant, it went UP almost 10%! TEN!!!! I knew we should have tried more chemo before collection, but our doctors insisted that that wouldve damaged the stem cells. And I'm sure they were probably right, but I feel like something else could have been done... So now, our predicament now is whether or not to go with a transplant (time is of the essence) or continue with treatment. With Thalidomides new availability in Canada, I want to say treatment. But would that be best? Lost and Confused...
Sent from my BlackBerry device on the Rogers Wireless Network

Cheers

After a week of painstaking agony and stress, the results of the biopsy have finally come back. The percentage of myeloma cells now present in Mama Bear are about 12%. Definitely not what we were hoping for. I think I can speak on behalf of everyone when I say we were disappointed. After SUCH a huge procedure, our hopes were that it would be down to zero. So, that was definitely a letdown. I guess you could say we were hoping to get more bang for our buck. Apparently, however, my mom went into the transplant with about 24%. So, it was reduced by about half, which is great. But from my understanding, I thought doctors normally wouldn't proceed with a transplant unless you were 20% or below? Which leaves me a bit confused, as our information seems to be a bit contradictory... It's not that i'm not grateful or anything, because 50% is huge. But I was really really hoping that the transplant would have been the end of it. Seriously, I have never prayed so hard for anything in my life. To exert so much hope and trust into something, and then to have results come back with... not the best results, it puts you into a bit of a slump. Sometimes, on this journey, you grow weary of constantly trying to be grateful. Sometimes, you just want a damn break. Sometimes, you just want to have a bad day. Today would probably be one of those days... But i'm **trying** to look at the bright side, because 50% IS a lot. I'm trying to keep myself busy with school and everything, because I really don't have the time or energy to mope. So.. CHEERS to a significant reduction! Because the important thing is that the myeloma cells went down. That's all that matters. One woman we know, her biopsy showed only a 1% decrease post-transplant, which i'm sure, must have been devastating. But after a few additional rounds of treatment, she was able to get to a place where her myeloma was untraceable. I realize that getting down to 0% after a transplant, depending on where you start, is not that common (which actually makes me question the validity of this procedure...). And truthfully, at the back of my head, I had a feeling that we wouldn't get down to zero, just because of how high we started off at. Granted, the path of those impacted by cancer are filled with many highs and lows. And so far, our highs have outnumbered the lows. We have a lot to be thankful for, compared to many others. SO. We'll roll with the punches just continue to chip away, like we've been doing since January, until we get to where we need to be. If we can get through what we've gone through, then there's nothing that can bring us down.

Don't Rain On My Parade

I’ve been meaning to write this post for awhile now… A little while ago, I consulted those on the MM ACOR Listserv (my friends, my therapists, my teachers, and my doctors all in one neat, amazing package) on a topic titled “Don’t Rain On My Parade”. It was in regards to, well, basically how you are supposed to keep your head up knowing that you or someone you love so much has cancer. How do you avoid that dark, ominous cloud from following you wherever you go? As many times as I try to flip that “cloud” the bird and tell it “FUCK YOUUU!”, it always seems to be there. Some days are better than others, but there is never a moment where I don’t have the reality of our situation sitting at the back of my head. No matter how great the news, there is this constant black cloud above my head always reminding me of my mom’s condition. And even if my mom were declared to be in remission (KNOCK ON WOOD!!!), I think it would still be there, following me wherever I go. I don’t know if this is some sort of paranoia or anxiety issue, but what I DO know is that the carelessness and blissful ignorance, that sense of peace, we once had pre-diagnosis, is something I will probably never really be able to experience again.

What I discovered through their responses was that, yes, I would probably go on living with this cloud hovering above my head for as long as my mom has cancer. However, that is beside the point. For those of you struggling with this same issue, you must learn to adjust, adapt, and witness the world through a different perspective. NONE of us know what the future holds, and that applies to both those fighting the brave fight and those not. As one person put it (thank you Val from Texas), although Multiple Myeloma is considered “not curable”, life, by nature, is “not curable”. The fact of the matter is that we must not dwell on what is to happen in the future and instead, appreciate the present. In our society, we have been so conditioned to plan and prepare ourselves for the future. The decisions we make are solely based on the benefits that we will reap, or the consequences we will bear, further down the path. But what happens when someone tells you you have cancer? What happens when all your hopes, dreams, plans, and thoughts don’t, all of the sudden, extend into infinity anymore? What happens when you are forced to face the very reality of your own mortality? Well, along with a huge slap in the face, you learn to adjust and refocus. Planning for the future is not a luxury that we have anymore. But perhaps that is a blessing in disguise. Perhaps it is us being forced to finally learn to live in and appreciate the present, to smell the flowers and feel the warm glow of the sun on our skin. To pause and take notice. We cannot let ourselves dwell on the “Big C”, not if we are to have the peace that we so desperately seek. Simply put, there is no future to deal with. All we have is each moment, opportunities given to us to live our lives. That is all that is possible. We cannot cry thinking that we are dying. We must laugh knowing that we are living. These are facts that I still struggle to come to terms with, but they are works in progress. And that's all we can do right? At least try to appreciate what we have been given and lead a life that is as honest and sincere as possible, no?

The Alchemist

This is absolutely RIDICULOUS! A person on the Multiple Myeloma ACOR Listserv recently presented a fascinating, and shocking, question on the forum in regards to the cost of Revlimid.

Which would rather have? A pound of GOLD or a pound of REVLIMID (chemotherapy)?

Recently, someone had expressed her concerns on the MM forum in regards to her not being able to afford her medication, that is, Revlimid. This form of chemotherapy comes in the form of a capsule that is taken once every day for about 3 weeks on, 1 week off. For her, the cost of this medication and ultimately, the cost of a possible remission, is about $10, 052.88 USD for just 21 pills (the cost of one "cycle"). Her pills weigh about four-tenths of an ounce, which means that Revlimid currently retails for about $20,000 USD an OUNCE!

Now, on the other hand, today's approximate GOLD price is about $1, 227 USD per OUNCE right now.

THAT means that if you chose the pound of gold over the pound of Revlimid, you made a very, very big mistake! According to today's current rates, a pound of GOLD is about $20,000 USD, while a pound of REVLIMID is $320, 000 USD!!!! So basically, the leading Multiple Myeloma drug, by weight, is about TWENTY TIMES the value of GOLD! Now just think about this.... If a UPS driver is delivering a supply of Revlimid (say 4 or 5 pounds) on his truck, he's transporting over a MILLION DOLLARS of cargo!

Now, as if that weren't bad enough, another forum member pointed out that only a tiny fraction of the capsule's content consists of the "active ingredient". The majority of the capsule's weight comes from inert components, such as binders and fillers. THAT means that for about 21 capsules, there are only about 521 milligrams of "active ingredient" a.k.a slightly over half a gram of TRUE Revlimid.

THUS, if we readjust our calculations, Revlimid ACTUALLY retails at a "mind-blowing" EIGHT.MILLION.DOLLARS A POUND!

So now, a new question is presented...

Would you rather have a pound of REVLIMID or a pound of weapons grade PLUTONIUM?

According to WikiAnswers, Plutonium sells for about $4,000 USD per gram, which is $1.8 MILLION USD a POUND. Are you catching our drift here? That means that Revlimid is roughly FOUR TIMES the cost of PLUTONIUM!

The cost of pharmaceuticals in exchange for life. Yet another issue that a cancer should NOT have to deal with.

Fucking Ridiculous.

Thank you Mr. Baron for this insightful slap in the face (from none other than BigPharma)!

Needless to say, CHANGE is needed.

BAHHHh1!!1

14 hours into our 24 hr urine collection...

and she forgot to collect.....

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!

The trials and tribulations of this GOD-FORSAKEN test!!!!

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"

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

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)

The website URL is www.humanityforhope.blogspot.com

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

L

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

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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