Wtf?!

My mom's HAIR is growing back!

hahaha

Fighter!

Ice, Ice, Baby

My mom looks like a big, bald squirrel. Because of all the ice she is chewing (see picture), she looks like she's hoarding a bunch of nuts in her cheeks haha. But she's determined! Her cheeks are cool to the touch when you feel them so that's good, now all we have to do is maintain consistency and be diligent! Other than that, today is a beautiful day. We have a million dollar view!


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Bald.

Shaved the head yesterday.

...

To say it was a little traumatizing would be a bit of an understatement.

It takes a little bit of adjusting, but I think these things just take a little bit of time to get used to.

Yesterday we packed all our clothes (like we were going on vacation or something!) and today we checked into our inpatient unit. It's been a long, busy, and heavy day. Right now, mama is hooked up to the IV machine for hydration therapy and will be until about 6pm tomorrow (it is now 830pm). The reason for this is because TOMORROW, she will be receiving the MEGA dose of chemo (Melphalan) to clear out her body. Apparently it is a tiny "push", but is potent enough to affect your taste buds for 6 months and give you mucositis. The half-life of melphalan is about 4 hours (?), so you want to get this out of your system A.S.A.P. (hence the hydration). So basically, mama bear will be forced to pee a LOT tomorrow. We do NOT want this chemo in her system. Get in, get out. She'll also be chewing on ice before, during, and after the administration of Melphalan. The reason for this is because, normally, you get mouth-sores (so bad that you have trouble breathing). What doctors discovered, though, that something as simple as chewing ice was enough to completely eliminate this very serious side effect from happening at all! What the ice does is it constricts the blood vessels in the mucus membranes of your mouth. Significance? The more constricted the blood vessel, the harder it is for the Melphalan to get circulated through that area. THEREFORE, ICE=GOOD!

Other than that, her room is MASSIVE. Its enough for two patients, but because of the unique circumstances of this ward (zero immune system), you aren't allowed to share your room with other people because of the risk of spreading germs, etc.

Tomorrow is a big day, will keep you updated.

Media Minute

We're in the news again!

Check it out HERE

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?

Fundraising 101

Having just completed (Phase I) of my very first fundraiser, I must say... I'm SUPER proud of what we've been able to accomplish. The amount of awareness that we've been able to generate since the beginning has surpassed all my expectations. I know that many of you will probably try to start your own sort of fundraiser to raise money and awareness for myeloma, so I thought I would share with you my "lessons learned" from this experience to help you out :)

1. There will always be those who support you, and those who criticize you. That's just how the game is played. Always show your gratitude and try not to take anything personally :)

2. ALWAYS have a Plan B... and C, D, E, F, G. Things never go the way you originally planned, so be prepared to make adjustments. You must be able to adapt to new situations and circumstances to make the most of your fundraiser.

3. Plan for the worst, Hope for the best :)

4. Stop searching. Make your own opportunities

5. He/she who cracks the whip will not always be the most popular person on the team. Such is the sacrifice that a team leader may have to make in order to get work done.

6. If you have a team working for you, delegate tasks. That is the only way to get work done.

7. Give yourself deadlines.

8. Have everything set up before you begin any promotion. Momentum is key and comes with publicity. If your donations program, etc. is not set up, then you will lose that momentum and interest.

9. Find ways to constantly keep up the momentum and motivation, in your team and your supporters. Once it is gone, it is very difficult to get back.

10. Never lower your standards. Mediocrity is NOT an option!

Feel free to add any of your own tips/advice!

Paws Up!

Little Monsters!
I wanted to update everyone on how PHASE I (more on this later!) of M.A.M. went :)

The competition for two floor tickets to Lady Gaga’s Monster Ball at Rexall Place in Edmonton on August 27, 2010 concluded two days ago.

We are pleased to announce that Kathy Chia of Edmonton is the winner. Congratulations Kathy, you’ve earned it!
We would also like to thank everyone who took part in the competition; thank you for participating and helping us raise funds and awareness for this little-known disease.

In addition, thank you to everyone for joining our campaign of awareness and hope. Now, little monsters and myelomaniacs, we are that much closer to making multiple myeloma a household name, a feat that will undoubtedly aid in the discovery of new treatments and, one day, a CURE! This would have never happened without the sheer, collective power of working together for a better future. So again, thank you!

Monsters Against Myeloma is FAR from being over (as we have some VERY exciting news to share with you all soon!), so please encourage all those you know to join our group and follow suit.

We have members here that come from all over the world! From France to Germany to Iceland to Brazil to the States to right here in Canada! Together, united as one, we are capable of achieving anything. We are capable of what, at times, seems like the impossible; we are capable of DEFEATING.CANCER.

We are still accepting donations for the Multiple Myeloma Research Foundation. Please visit http://321cure.themmrf.org/site/TR?pg=fund&fr_id=1040&pxfid=9150 or the discussion board of our facebook group for more details.

PAWS UP LITTLE MONSTERS, PAWS UP!

7:0

It is exactly 7 days until my mom gets her stem cells reintroduced into her body (Day 00). Honestly, I think I am more anxious and nervous about this procedure than my mom is! She is actually very prepared to go in, but I can't help but feel a little terrified. Everything is just happening so fast. Hopefully it'll be the same for recovery as well... Prayer Warriors, please send a message to God that everything will go well. That this is the very last thing she will need before a long, deep, drug-free remission. Thank you.
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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!!!!

Panini

BAHAHAHAHAHAHAHA
I have a funny story for you.

Scene: Cafeteria getting lunch.

Dad: I wonder what the lunch special is.

*sees sign*

Ill have your roasted chicken punani

Cafeteria Lady: you mean chicken panini?

Dad: Yah! Your chicken PUNANI!

Bahahaha
For those of you who don't know, a "punani" is, basically, another word for...well, a woman's lady bits.

So, essentially, my dad asked the cafeteria lady for some roasted chicken va-jay-jay haha.

Only in my family...
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The Great Divide

Sitting in the clinic while mama bear gets her blood drawn.

Can't stop staring...
My brother's sock tan is RIDIC.

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Shed.

The hair has started to slowly fall out :(

JUST when we thought we were out of the clear...

It has begun...

The Harvest II

6:00AM
Up again! Here's to round 2! And THIS time, I actually went to bed at a reasonable hour! No zombies to-day!

8:50AM
I lied. Why was I so perky this morning? Me=zombie. We got some good news though. We're just about to start the harvest today andd our lovely nurse told us we collected about 400 million stem cells instead of the 200-something we had previously thought. From my understanding, one transplant takes about 275 million stem cells. So by the end of yesterday, we were closer to the two-transplant mark for the amount of cells we collected than we were for the single transplant. Two transplants take about 550 million stem cells, so we're getting there! If we can collect even MORE, that would be great! Waste not, want not right?

12:00PM

This is the "colorgram" that the transplant nurse uses while she is monitoring my mom. The tube in the middle is supposed to be a color that is in between the third color from the right and the third color from the left. As you can see, the tube is a bit dark, so some adjustments had to be made.

2:ooPM

TRANSPLANT IS OVAAA! We don't know our final numbers yet, but we've collected somewhere between 600-700 million little warrior stem cells! That is DEFINITELY enough for at LEAST 2 transplants!!!
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The Harvest

6:00AM

Bed at 2am. Up at 5am. Today is the day. Well...maybe. We are going in for a blood test to see if my mom has enough stem cells in her blood for transplant(s). Prayer Warriors, God has heard you from above. So far, this process has been actually quite lackluster and uneventful, which is a GOOD thing. Everything is going very smoothly and we are facing this massive procedure one step, one day at a time. Please unite again and pray that the remainder of this process go quickly, efficiently, effectively, and successfully. Please pray that my moms body will be able to produce enough stem cells, enough little warriors, for two to three transplants! Thank you. Ill keep you posted.

9:00AM
Transplant is a-go-go! The machine looks like a map of the London Tube! I'm going into this with a couple reservations... This is a REALLY important procedure, and I feel like we are rushing it for some reason. From my understanding, the more stem cells collected, the better no? I know that the standard for these things are to collect enough stem cells for about two transplants, but if you have the chance to, wouldn't it be better to collect for three (if possible)? Why not wait another week and take more G-CSF (stem-cell stimulating) shots to increase production? I asked the nurse this and she said that most myeloma patients don't even use a second transplant and that if a third one is needed, a transplant is probably not the best option anyway? On one hand, my gut tells me that she is misinformed... On the other, I know that these doctors and nurses know what they are doing and have had plenty of practice. Just a little confused. Any thoughts on this my wonderful readers?

12:00PM
I feel like I need to get a bottle of wine or something for every nurse we work with. They are THAT awesome! There really should be a nurse appreciation day. These guys are IMPECCABLE and absolute angels. How they do their jobs, I really don't know.

Nice View :)

2:00PM

THIS is what LIFE IN A BAG looks like, my friends (literally)! Inside that beautiful bag is an army of little warrior stem cells just WAITING to be put back into mama bear's body!

3:00PM

For SUCH a critical procedure, today has been quite uneventful. Despite the horrendously early morning, today has been very low-key. Mama bear has been lying on the bed while Dad and I float in and out of the room. Basically what happens is the machine circulates her blood out of her body, filters out the stem cells, and puts the blood back in. From my understanding, it is like...an incredible hulk version of a dialysis machine. Kind of. There's only so much amusement you can get from watching a bunch of tubes circulate blood before the novelty wears off (a.k.a the first 20 minutes of a 6 hour process). So basically, one must learn to improvise. THAT included a chit-chat party with our hilariously sarcastic nurse, walks, and two of my most favourite-ist activities in the world: eating and sleeping (obvi). At this rate, I will have gone from moderately in-shape pre-transplant to incredibly obese post-transplant. God gifted me with the ability to emotionally eat and ill be damned if I don't take FULL advantage of that. Just give me a cake and let me be, and ill be as happy as a clam (ADD moment: why ARE they so happy anyway?) It is ironic, though, no? There is so much D.R.A.M.A that comes with this process and yet the most exciting moment of a 6hour day was a 20 minute moment. But I like to think that great things come in small, humble packages. Mama bear's little stem cells quietly got together for a K.S.A. (Kick Some Ass) meeting and decided to rally together and march off into a hospital IV bag. It's almost as if they were like, "we'll leave quietly so you can rest mama bear. Don't worry about us, because we'll be there for you when you need us". They are like her Little Warriors. I like to think of it like that :) or maybe that is my sleep deprivation talking... WHO KNOWS!?

4:00PM
We are done Day 1 of 2. Amazingly enough, mama bear collected enough stem cells today for an entire transplant. So, we've got that covered. Tomorrow's collection will be more of a "just-in-case".
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