The World of MM

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

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

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

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

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

Oh Happy Day!

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


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


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

L

Anniversary

"If there were ever a time that I needed a prayer to be heard, now would be it. Mom has cancer."

Immortal words I wrote down when my mother was discharged from the hospital exactly one year ago. It started out two days earlier as a sore throat and, somehow, ended up with cancer. It's absolutely incredible how much can happen in a single year. Your life can change in the blink of an eye. YOU can change. The experiences we have experienced in this last year can be described as nothing short of phenomenal, in both good ways and bad. We've been presented with a very... Hard reality. I don't want to say unfortunate, although in many ways it is, because it implies an unhappy ending to me. But to say this past year has been a struggle would be an understatement. However, a lot of good has come out of our situation as well. Its almost like Pandora's box, where all the evils of the world flew out once opened. But despite all the darkness and malice in the world, there's still a little light, hope. And no matter how big or small that light is, it is enough to be seen in a world of darkness. With hope we gathered strength, and with strength we built resilience and fortitude. Like a bricklayer, we built ourselves up, slowly but surely. This year has taught me many lessons in strength and perseverance, in appreciation and gratitude, and has given a depth to my perception of the world I never knew possible. Though it has been a difficult year, a number of unlikely blessings have revealed themselves, and I am extremely grateful for them. While it would be quite a stretch to say that these experiences have been blessings in disguise, there has been much good that has risen from our ordeal. The end of the year is a time for reflection for many, and this year is no exception. In fact, these last few weeks are more like a reflection of reflections amassed over time, an incredible sum of lessons learned and trials tribulated. And now, here we are. We've come full circle, back to the day where it all started. But the world is not the same, nor are we. As the world turns, life goes on and regardless of what happens, you gotta keep up. You gotta pick them legs up and move, because the world doesn't wait for anyone, and you end up getting left behind in the dust. Although I am only in my early twenties, I feel like an old soul. As traumatic as the last year has been (especially the first 4 months), I have learned more in one year than I have in 21. It's hard to put these experiences into perspective. People just don't understand, unless they, too, have been impacted by the claws of cancer. On one hand, you wish they could understand the depth and magnitude of your pain. But on the other, this is an experience that you would not wish on even your worst of enemies. It's a twisted reality, it is. Everything about cancer is twisted. You get jaded real fast on certain aspects and develop a deep respect and appreciation for others. Why is it when you are threatened with death that life seems so much more beautiful? It's like some sort of sick joke being played. There is still residual trauma that lingers inside from those first few months. Physically, I may have recovered. But mentally, still shell-shocked. Not a day has gone by where I do not think about the mortality of my mother. It is now a dark cursed cloud that follows me everywhere I go. Some days are only slightly overcast, while others, thundershowers. And I know my mother feels the same. I can still see the pain in her eyes, hear the sorrow in her voice. She's pretty good at covering it up, but this son knows his mother well. Overall though, I would have to say that we are all in much better places. Cancer has forced us to make certain lifestyle changes, both physically and mentally, which would benefit anyone regardless of the circumstances. We're completely different people now. You'll have to excuse me if this post seems a bit drawn out, i'm just writing down these words as they come to me.

In the past year, we've faced and overcome a cancer diagnosis, been on several different chemotherapy regimens, started a fundraiser that received world-wide attention, gone through an autologous stem-cell transplant, completely changed our lifestyles in the way we eat, exercise, and think, and so much more. We've come...a very long way, and we still have a long ways to go. But, if we've come this far, we can do anything. Currently, mama bear is on a mix of Velcade, Cyclophosphamide, and Dex to bring the numbers down a little more. We're hovering and debating the addition of Revlimid to her current regimen or the possibility of another transplant. With the news that Revlimid may cause secondary cancers, i'm a little hesitant to have her go on it again. Then again, what kind of chemotherapy doesn't have the risk of secondary cancers? That stuff is poison and meant to shock the system. On the other hand, the very thought of another transplant is exhausting and daunting. Due to overbooked hospitals, I'm pretty sure we've passed the time period that would consider this second one a tandem transplant (and thus, the possibility of higher effectiveness), so i'm a little reluctant to go down that route as well... It's not like these stem cells are an unlimited resource. We've got enough for one, MAYBE two, more transplants. So we have to be smart with our choices. As usual, we must face some tough decisions... In other news, i'm gearing up to start the second half of my fundraiser, Monsters Against Myeloma, so stay tuned for more information. I'm also planning to use this site as a resource for new updates and news in the MM world. Definitely lots of work ahead of us, but it's all stuff that will hopefully help us move forward :)

I'm thankful for what 2010 has taught us, but i'm ready for it to be over. I'm hoping with everything that I have that 2011 brings health and happiness to my loved ones. I've come to realize that the important things in life are the simple things. Now, with everything in my life put into perspective, things seem much more clear. All I could ask for in this life is for my loved ones to be happy, healthy, safe, and strong. Cheers to a (soon-to-be) New Year my friends.

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.

Wish Bone

So tomorrow is the big day. Mama and Papa bear are going into the clinic to get a bone marrow biopsy done, which will basically tell us whether or not the stem cell transplant was effective. For those of you who aren't aware, this procedure is the best way of getting the most accurate image of "where you're at" because it gets a direct sample of the myeloma cells residing within the bone. Needless to say, i'm pretty sure I can speak on behalf of everyone when I say that we're a little nervous... Since my mom was discharged, we've been living in this magical land that goes by the name of ignorance. Ok well, maybe not ignorance, as we are not choosing to ignore anything here. But after a stem cell transplant has occurred, there is usually a period afterwards where you go medication-free and just focus on recovering, on healing. It's been absolutely amazing, almost as if nothing ever happened. As if our lives had returned back to normal, whatever that means anymore. But subtle hints, like my mother's lack of hair and an ever-present cloud hovering above my head (although small), show that reality exists, and gives this dreamscape away. Ignorance truly is bliss. The truth is terrifying. If I could stay in this moment of not knowing forever, I would be satisfied. But alas, the world does not work that way, and we all must come to face reality sooner or later. Whether that is a good or bad thing remains yet unseen. Sometimes, the truth is a hard thing to face. Yet we all manage to derive strength from within in order to do so. I will be honest, since the transplant, not a day has gone by where I do not think about the mortality of my mother. I have gotten better over time at ignoring or shunning these thoughts to the recesses of my mind, but that does not mean it isn't easy, that it doesn't cause me great pain. I don't think my brother, or even my father sometimes, realize to the full extent of what we have gone through and what may lay ahead. A blessing indeed, to not be burdened with such thoughts. Or maybe they do, and they just don't show it. I try my best not to. But there are times where I feel the lessons we've learned, such precious lessons, have already been forgotten among them. I hope not, because those are lessons that no one should have to re-learn. Since the transplant, I have literally prayed every.single.day for the same thing, hoping that they be heard by someone above. That this transplant, and all the treatments beforehand, be all that my mother needs in order to obtain a strong, sturdy, everlasting remission until a cure is found for her, that will work for her. Every day I have prayed for this, and the general well-being of those close to me. Every day. I have never prayed so much for anything in my entire life. And so now, here we are already, turning the page of a new chapter that will hopefully be filled with good health, hope, and happiness. Tomorrow is the day, and I am praying with everything i've got. Please pray for us.

Vive Ut Vivas!

Hi!

I was just contemplating writing another post or studying for my (ugh) Management Science exam coming up (it sounds as bad as it is) and realized that my last post was almost a MONTH ago! Shame on me *slaps wrist*. So here I am, almost a month later, bringing you all up to speed on what's been going on in our lives.

Since my mom was set free from the transplant ward, things have been quite calm, serene, and almost surreal-like. At least compared to when we were in for the transplant. Looking back, it seems as if we live in an entirely different WORLD now. My mom is like... Superwoman. The rate that she was able to recover exceeded even my own expectations. I knew she had her relatively young age, otherwise very healthy body, etc. on her side, but I was still shocked to hear when I called home one day (within the same week she was discharged) that she was "out for a drive".........BY.HER.SELF!

..umm WHAT?! Her naivety was cute, but DANG! I almost had a baby heart attack when I heard that. She was supposed to be at home resting and recovering, partitioning herself from the outside world and its GERMS. But I guess I couldn't really blame her for wanting to get a little air. Who wouldn't want a little adventure after spending almost two weeks cooped up inside a hospital room? Regardless, my mom was pretty much back to her normal strength and eating habits before she even left the hospital. From what I read and have heard, that can take anywhere from 4-6 months to get back to! And yet mama bear hadn't even been discharged??? We were talking about why we thought she was feeling so great post-transplant and came up with this: Organic vegetables and fruits, elimination of sugars, TONS of water, regular exercise, lots of laughs and smiles, and aloe vera juice PRE-TRANSPLANT(!!!). We had been seeing a naturopath (shhhh) for a little while and he had recommended taking aloe vera juice because it was supposed to help protect and regenerate the digestive tract. As i'm sure many of you know, the digestive tract is probably the part of the body that is hit the hardest - primarily due to the megadose of Melphalan. When your digestive tract goes, so too does your appetite and ability to hold down food and thus, your rate of recovery. My mom was pretty adamant and determined with her aloe-juice-taking and really credits it for why she was able to recover so fast. There were a couple days where she threw up, while we were in the transplant ward. But other than that, she didn't lose any weight (she had actually GAINED a couple pounds within the first week after discharge!). I'm not trying to sell or endorse anything to you guys at all, but I encourage you to do your research on it. If it is the reason why my mom was able to recover so fast, then many, MANY others would be able to benefit from this knowledge as well.

On another note, I had tried to.. well, fatty my mom up before she was admitted in order to offset the weight loss that was associated with the transplant. But apparently, this isn't really a good idea because the weight loss is due to a decrease in MUSCLE mass, not fat. So if you are someone you know is going into transplant, make sure they try to build as much muscle beforehand as possible.

I'm happy to report that mama bear is doing incredibly well :) Everyone is commenting on how good she looks, so that is great! We got back into Church when we were diagnosed (funny how that happens huh?) and really got back in touch with God (as I'm sure many of you can relate). My mom had to miss out on about a month's worth of Church when she was in transplant, and went right back afterwards - and no one noticed a thing! That's how good she looked! We have a couple doctor appointments ahead of us that entail a biopsy and re-staging. We're all a bit nervous... But hoping for the best. What else can you do, right?

Mama Bear and her cub

Family Thanksgiving :)

Friend Thanksgiving :)

With Thanksgiving weekend (here in Canada) just past, i've been able to reflect on what it really means to be thankful for what you have. Having my entire family in one gathering, eating and laughing (truly the BEST that this world has to offer!) - it was just incredible. I'm truly, truly thankful for everything that I have, the people in my life, and the lessons that I have learned. That weekend was definitely one massive moment of reflection. To think that one year ago, we had not yet been diagnosed...and then everything that we have learned since then? It's absolutely staggering, incredible, and humbling. Our journey with cancer has not yet ended, but for now, everything is perfect. Fall, my favourite season, is upon us and i've come to learn that it is essential to live in the moment. So naturally, I got a tattoo! I'd been wanting to get another one for awhile, so what better a time then Thanksgiving?! It says "Vive ut vivas", which means "Live so that you may live" in Latin. I thought it was fitting :)

Some Fall pictures on campus :)

So basically, that's pretty much you being up to speed :) My brother and I are currently back in school, and my parents are back home doing their thing. And i'm so very grateful to have such a simple luxury like that. I will admit, once everything was back to "normal", I felt this great pressure to do something amazing and life-changing. Coming from an experience like cancer and a stem-cell transplant, with all the lessons you learn and perspective you gain, I felt like going back to the ho-hum days of school weren't worthy of my newfound outlook. But i've come to realize that this "ho-hum" normality is exactly what we've been fighting so VERY hard to regain. This lifestyle, this ability to be somewhat "normal" again, really is a luxury, it is not a right. These lessons that i've learned, they are something that I am extremely grateful for, things that I will carry in my pocket for the rest of my life, wherever I go. This year has, undoubtedly, been the hardest year of my life. But it's also been the greatest (not ... "happy"-greatest, but more along the lines of "epic"-greatest, if that makes any sense). I feel like i've just returned from some grand adventure, a lifetime's worth of sorrow, gratitude, and wisdom on my back. I'm a changed person. We are changed people. And even though I know our adventure isn't over, I do know that if we were able to survive (and pass with flying colors!) the last 9 months, we're capable of overcoming anything set before us. And so are you. Never forget that! YOU can get THROUGH this! And if you ever need someone, know that I will always be here for you.

FREEDOM!

Mama Bear is OUT of the hospital!!!

THANK GOD!!!

My brother and I went down to see her over the weekend, and her counts were slowly rising (with the help of G-CSF shots). Saturday her neutrophils (a type of WBC) were at 0.4. The doctors usually want you to get to a CONSISTENT level of 0.5 before they discharge you, so we were close. But on Sunday, when we left, they actually dropped to 0.3. To our big surprise, I found out that yesterday (Monday), my mom was discharged from the hospital. Um, EXCUSE ME?! As much as I want her out of there and at home, I want to make sure these things are done properly so as to avoid any unnecessary issues in the future. But apparently her counts went from 0.3 on Sunday to 4.0(!!!) on Monday! So, I guess it was a safe assumption that it would be ok to discharge my mom.

Today, they went in for an appointment with our Onc and her counts remained good. Our visits to the hospital have now gone from live-in patient to ONCE a week!!! What a blessing! Once she gets home, I know she'll recover even faster. Nothing feels as good as home right?

The storm is over and it is a huge, HUGE relief to know that we can just focus on recovery now. Although I can't really say much (because i'm not the patient, myself), the whole transplant process seems to have gone without a hitch! The side-effects were somewhat minimal and, all in all, everything was quite tolerable. My mom's biggest issue towards the tail-end was boredom, which of course, isn't really an issue at all. So i'm very thankful for that. Just goes to show the power of support and prayer.

To anyone that is just about to embark down the road of a transplant, know this: It's not as bad as it seems. It really isn't. I think the fact that it's a TRANSPLANT is what makes the situation seem so intimidating and terrifying. While it IS a major procedure, most people are more afraid of the word than they are of the actual process. All the connotations and associations with that word seem to imply some grand, DRAMATIC procedure. But in all honesty, it's not that bad. In truth, the amount of work-up to get to the actual transplant is probably harder than the transplant itself. The anxiety, the stress, the planning, the re-planning, the research. It takes a toll. My advice to you? Take it day by day. The work-up schedule is...intimidating and overwhelming, to say the least. But instead of looking at the overall view of the million things you have to do in a month, just think about what you should do that day, or even the week. It makes things a LOT easier. And ALWAYS remain optimistic, strong, and positive :) I want to talk more on this, but I currently have an assignment due tomorrow that I have yet to start hehe :) First week of school and i'm already getting my ass handed to me. JOY!

Much Love,

L

Media Minute

We're in the news again!

Check it out HERE

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!

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".
Sent from my BlackBerry device on the Rogers Wireless Network

The Big T

So. Today is a big day. It is the first day in a very important and long process that will **hopefully** do the trick in setting my mom into a deep and long remission, until a cure is discovered. Yesterday I went to bed with a mix of emotions... This day has been a long time coming. And you would think 7 months would be plenty time to prepare yourself not only mentally, but also physically and spiritually. But the truth is, no amount of preparation can make you feel "ready" for this kind of procedure. Unless you've gone through it before, you really have no idea what to expect. And even if you have, I doubt the second time is the same as the first. We figure, it is best to just take this thing on a day to day basis. It can get a little overwhelming if you look at the process as a whole. So, baby steps here. Let's hope this thing goes by as fast as treatment has (its already been almost 7 months!!!).

In other news...
This has probably been one of the longest weeks of my life. Let's see:

Thursday (July 8) - Newspaper interview

Friday (July 9) - Front page news, damage control, last day of chemotherapy before transplant, PEREZ HILTON shout-out. HUGE influx of facebook group members!

Saturday (July 10) - Global Shift article

Sunday (July 11) - Unproductive M.A.M. Meeting

Monday (July 12) - Drama/Crisis/BIGTIMEDamageControl. My very first meltdown :) (total gongshow, by the way)

Tuesday (July 13) - Productive M.A.M. Meeting

Wednesday (July 14) - Bone Marrow Biopsy Results (74% down to 16%!!!!)

Thursday (July 15) - A **LOT** of M.A.M. Work

Friday (July 16) - Monsters Against Myeloma is LIVE!

Saturday/Sunday (July 17/18) - Rest

Monday (Today) - Begin Autologous Stem Cell Transplant process.

Shiz. We've definitely been busy. Overall, I think my stress level has probably gone up a couple notches. From the fundraiser to some family issues to the stress of the transplant, it is a miracle I have not been admitted into an institute yet. To tell you the truth, I am absolutely terrified of this transplant coming up. Not so much the procedure itself (although that is undoubtedly a bit daunting), but more so wondering how my mom will take it... All I want to do is protect her, but in these situations, it is QUITE a frequent occurrence to feel powerless... But not hopeless. Because there is ALWAYS hope. Sometimes it feels like a David and Goliath battle. But we all know what the outcome of that situation was right? ;) So, like every other day, I put on my brave face and do everything all over again. Its not easy, but you'd be surprised in the places you are able to draw strength from. We're starting a new chapter now, so wish us luck :) And for my prayer warriors out there, please pray that this thing goes without a hitch. That my mom has a super speedy recovery. And that it will be the last thing needed to set her into a long and lasting remission. Thank you :)

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Biopsy!

Just found out my mom's second, and most recent, biopsy results. I can't quite remember the exact number, but I think back in january mama bear had about 74% cancer cells within her bones. From what I understand, a bone marrow biopsy is the most accurate way of determining "where you're at". With that being said, my mom's results indicated that she went from 74% down to 16%(!!!!!!!!!). That is absolutely AMAZING!!!! Today is a good day :)

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And So It Begins...

Ok! Well that meeting was... Productive! It went really well, actually. We do not yet have the results back from her urine test, but our doc told us that our total protein (mix of good AND bad protein) is now in the NORMAL RANGE!!!! HALLELUJAH! You can imagine how elated we were when we heard that :) Being normal, that must mean that our m-spike protein levels went down a lot! So, as I mentioned before, we had no scheduled appointments after today. Well, we've decided to go for one more cycle of velcade/dex/rev to further reduce her proteins before we start prepping for transplant. June 15 is our consult date for stem cell transplant. Sooo, yeah. We're already at that point! I won't lie, I left the clinic with a mix of nervousness and anxiety (as did my mom). But, I think these feelings are normal and expected. This is a major milestone and treatment for us. I think we'll just need a couple days for everything to sink in. Good thing is, this is absolutely a step in the right direction, a step towards better health. It is completely necessary. We all know that. So, I guess we will have to start preparing for what is to come! Today was a good day and I am glad we are taking action and getting things initiated. *deep breath* This is another big step in our path to recovery. Wish us luck! All tips/recommendations/suggestions are greatly welcomed and appreciated.
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Wowza!

Waiting for our end-of-cycle meeting with our doc. As of now, we have NOTHING scheduled after today, so obviously this meeting is an important one. Since our last meeting with him, my mom's PN has completely subsided! I'm not sure if its because we started seeing a nutritional doctor, but wow! Isn't that great!? Her back has been a little sore, but we're hoping that that is from her Revlimid and a sign that it is working. Gotta think positive right? We met a guy that we hadn't seen since our first support meeting (which I had posted about earlier), and since then, he has gone through a second stem-cell transplant. This man's story is astonishing and inspiring. Usually after a transplant procedure, you're in the hospital for about a month (give or take) in order for you to recover. This man was there for seven days. When he was first diagnosed, he had about 97% cancer cells within his body. He now has none. Zero. I think I can speak on behalf of everyone when I say, HOLY SHIT! You'll have to excuse my language, but how effing amazing is that?! He credits his recovery to eating healthy, being active, and having a strong, mental outlook. Before he goes to bed, he tells his white blood cells to "go and get 'em". His story was a reminder that it is so important to always keep your head up. Your mental outlook and perspective DOES affect your physiology, and he is living proof of that. Anyways, going in to see the doc. Ill keep you posted :)
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Update Yo!

So I figure it's probably due time that I post an update on where we're currently at. A lot has happened since the last time I posted anything about my mom's progress. So here goes! About a month or so ago, we learned just exactly how fragile my moms bones are. We had just got home, and my mom was leaning against the kitchen counter (no biggie), and she fractured.her.ribs. That was a bit freaky. Definitely another wake-up call (don't you just LOVE how many this condition gives you!? Like oh em gee! (That was sarcasm, incase you couldn't tell)). Thankfully, it wasn't anything major or serious, so we just made SURE to take it easy and rest up. Thank the lord winter is almost over. Can you imagine what a slip on the ice could do! Not cool.

Because the velcade was not cutting down the numbers as fast as we wanted, we also added revlimid to our treatment. That was a little stressful because we had been anticipating a host of new and wonderful side effects, but thankfully, they have been quite minimal! All things considered, we have been very fortunate in terms of side effects. Some additional tingling/numbness in the hands and feet, and a little more fatigue, but definitely not anything that impaired our current quality of life. The other day, we got our numbers in from our first cycle of rev/velcade/dex, and the numbers were great! Our m-spike levels are down to about 34.9 g/L. Still not where we need to be, but compared to diagnosis (89.7!!!), that's a SUPERB number. One round of revlimid/velcade/dex has decreased the protein numbers more than about three rounds of velcade/dex. So, if the m-spike continues to drop at a constant or, hopefully, increased rate, we can expect to be prepping for transplant in about two more cycles! Yeeeeeuh!

A little while back, I had mentioned our little dilemma with the nutritionists and which to see. Well, we decided to NOT go with the doc with all the connections. Nothing says "I care about you" than being rushed out of an office with a price quote of supplements. Gee, thanks! Not. From personal experiences, I have found that a doctor's personality and how he/she addresses you is equally as important as how he/she treats you. At least in our case. In the past, when we were assigned a "substitute" because ours was too busy for our checkup, she ended up being very confusing and a little pessimistic. That took my mom a good week to recover from (you can imagine my frustration! My family worked so very hard to get her to a place where she was stronger and happier, and that came crashing down in about twenty minutes...) I find that if you feel a doc cannot give you the time of day, then how much do they really care for you? We need a doc that we can believe in. So we decided to go with the warm, inviting, PATIENT nutritionist instead. So far, we are happy with the experience. Albeit, we haven't done too much, but you can tell that the staff truly care for you. They see you as human beings rather than paychecks. So, that's always good. That's where were currently at (literally. In the nutritionists office as I type!) I don't have a paper of the current nutritional treatment we're on at the moment, but ill post one up when I get home so you can all take a look :)

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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

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!