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

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...
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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.

Britney Spears

The following is a copy of the message I sent out to all the members of our "Monsters Against Myeloma" facebook fanpage:

Subj: Britney Spears!!!

I just shaved my head.

Where to begin, where to begin… If you grew up in the 90’s, like me, you might know what I look like. Yes, that’s right, Krillin from DragonBall Z, minus the robes and muscles. Add in Will Smith ears and, now, a never-ending forehead (or in the words of Rihanna, “5head”), then VOILA!

Spitting. Image.

Two days ago, my family decided that it was time to shave my mom’s hair. To say that that was traumatic would be a small understatement. So yesterday, my brother and I shaved OUR heads to make mama bear feel better. Needless to say, hair is NOT just hair. Hair loss is a common side-effect of chemotherapy seen in cancer patients. Although many will often say that "Hair is just hair, it'll grow back", the issue can often run much deeper. Hair is not just hair, it's something that is a part of our being, like our laughs and our smiles. The hair loss associated with chemotherapy is a strong symbol of a cancer patient's plight. Before all this stuff happened to us, as someone viewing from the outside-in, I used to associate the hair-loss as a sign of frailty, sickness, and vulnerability. However, my perspective on the issue couldn't be any more different now. Now, whenever I see a patient suffering from chemotherapy-induced hair loss, I see it as a true sign of strength. This might sound a bit awkward, but I really do think that this image, this "symbol", is actually quite beautiful. To see someone fighting so hard and willing to do whatever it takes, it is a sign of bravery, strength, and perseverance. One that deserves a standing ovation. I don't usually send out messages that are so personal, but I thought that this was important.

My hopes are that, through this message, your views of the "typical" cancer patient will be changed (if you see them like I once did). That baldness, that fatigue, that struggle. It is something to be admired. These people are *literally* fighting to live, fighting for things that we take for granted every day. They are fighting for a walk in the park, a swim in the lake, a moment to laugh. They are putting every single ounce of their BEING into fighting off a terrifying beast, so much so that they have no energy left to eat, walk, or even talk. This courage and strength is something to be admired. So, without sounding too preach-ey, the next time you see a cancer patient, please keep this message in mind.

In conclusion, I leave you with this:

There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head. 'Well,' she said, 'I think I'll braid my hair today.' So she did, and she had a wonderful day.

The next day she woke up, looked in the mirror and saw that she only had two hairs on her head. 'Hmmm,' she said, 'I think I'll part my hair down the middle today.' So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. 'Well,' she said, 'today I'm going to wear my hair in a ponytail.' So she did and she had a fun, fun day.

The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. 'YEAH!' she exclaimed, 'I don't have to fix my hair today!'

Health, Hope & Happiness my friends

Lance

If you've been following my blog, you'll recognize that a lot of that message mirrors a post I put up earlier titled "Standing Ovation". I think, if we can spread this message to as many people as possible (in this case, 970 members), we can start a shift in attitude that can result in more support and understanding. I have a fairly large platform of young (actually, all ages!) people that I can speak to, so why not take advantage of it?

As you know, my brother and I shaved our heads last night to help support my mom. A few observations:

1. I am almost positive I had more hair when I came out of the womb than I do now.

2. I cannot stop rubbing my head!!! It feels like a peach :)

3. It is shocking how much your hair does for your scalp! It's so sensitive now! And if I walk really fast, I can feel the wind on my head, and DANG is it cold!

REBIRTH

Well, today is the big day! Today is the day that we've all been working and waiting for! Today is the day mama bear gets her stem cells back a.k.a Day 00. A lot of people refer to this day as their second birthday because you are receiving pure pluripotent stem cells (able to turn into RBCs, WBCs, etc.). That means that, somewhere down the road, my mom will have to re-receive her immunization shots (just like a child) because the "information" from her last vaccinations were not stored in these stem cells' memories. So, HAPPY BIRTHDAY mama!

11:20am
Stem cells are being re-introduced!

Beautiful Stem Cell Warriors

Stem Cell Warriors marching off to the front

11:25am

I will never be able to eat corn again...

Why, you ask?

WELL. Before the stem cells were infused back into the motherland, they were stored in a type of preservative. Now, as they are put back into my mom, her body starts to take up the stem cells and rid itself of anything else that is foreign a.k.a the preservative. This is done purely through the natural process of perspiration (not sweating, but just...diffusing out). As my mom exhales and her body perspires, the preservative, which has a HEAVY "creamed corn" scent, is excreted. At first, it wasn't that bad. But now, holy guac.

It. Is. THICK! I may need to go for a walk/breather so I don't pass out. Needless to say, corn will never taste the same again (if I can work myself to eating it again).

11:35am

Months of stress and anxiety. Weeks of work up (tests, medication, etc.). A day and a half for harvesting. All leading up to this critical point, the ACTUAL transplant itself. This grand and momentous occasion.

It took 15 minutes.

I must admit, for all the work that you put into this procedure, the transplant, itself, is QUITE anti-climatic. It is such an important procedure, a procedure that can make the difference between life and death really, that you expect something very.. I dunno, BIG! But just as fast as they nurses were in, they were out. I barely had a chance to take a picture because the stem cells were being infused back so fast. You almost expect something a little more intense. But, like I said before, perhaps great things come in small, humble packages. And that's exactly what this transplant was.

I was really hoping to take my mom out on pass (you don't start to feel the side-effects for about 3-4 days afterwards), but we are apparently a part of this new study (mama bear is only the second person to have gone through this at our hospital) where patients are given Velcade (chemo) before and after the transplant. Hopefully it will mean a long and lasting remission. Has anyone heard of this before? So that means we can't take her today after she's completed her hydration because she's getting her Velcade tomorrow. But afterwards, we should be good to go. I think she needs to get out of the hospital. Aside from the absolute STUFFINESS of this place, you feel like you're bunking in (as our dear friend, Carol, said) an A&W a.k.a Brown, yellow or Brown, orange color schemes. Let me tell you, whoever the hospital hired as their interior designer for this ward...Fail. Unless you have some weird fantasy to live in an A&W or something...

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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.

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.

Shed.

The hair has started to slowly fall out :(

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

It has begun...

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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This Shit is INSANE!!!

HOLY GUACAMOLE!!!!

OK. I just thought I would update everyone on what we've been up to and how the "Monsters Against Myeloma" event has been going :)

The last 24 hours have been BANANAS! Where do I even begin?!

Perhaps the beginning is a good start (obvi).

(I'm running on about 4 hours of sleep here, accompanied by +30C weather. So if I seem a little crazy, it's because I am)

1. Yesterday I did a great interview with the Edmonton Sun, answering questions about the MAM event and basically what we've been up to since the beginning of the year (diagnosis). It was quick, simple, and that was that! I was expecting the article to be a tiny little blurb in some obscure location within the newspaper, but DANG was I wrong. This morning I woke up to a text message saying, "You're on the front page! Congratulations!" My mom would later tell me that she had opened up a fortune cookie the night before foreshadowing a "surprise". Coincidence? (Link to our article HERE)

2. This bit might seem a little confusing, so i'll try to lay it out the best I can. Basically, we have kept my mom's situation on the downlow within my family solely for the reason that my grandparents don't find out. The very last thing we need is for another family member to get sick from stress. Not cool. So because of that, we had only told a couple families within our extended family. I'm not entirely sure WHAT I WAS THINKING when I was doing the interview and sent in the picture for the news article, but it definitely was not one of my brightest moments. So when I read the above mentioned text, I literally sat up straight in my bed and almost screamed. Yeah yeah, drama queen, I know. But I soon found out that the Sun had posted a HUGEEEEE picture of Gaga with a picture of my mom and I on the bottom. Yeah, that's not gonna get any attention AT ALL! You see, there are still people in my family that live in Edmonton who don't know about my mom's situation. I think I was somehow trying to get publicity for the event but at the same time foolishly pretend that my family would never get word of it? Silly SILLY Lance, Tricks are for... (you can complete this sentence). So for about a gooood...5 hours, I was a nervous wreck. I don't think I have been that stressed out since my mom was diagnosed. Yeah, brutes. I even lost my appetite (if you will remember, this also happened to me when mama bear was diagnosed). MY APPETITE! This is coming from a guy that feverishly watched 5 hours straight of Cake Boss...WHILST.EATING.CAKE! (and lots of it) Anyways, long story short, we haven't heard from any family members (yet), so we're hoping they didn't hear the news. My mom freaked out a little this morning, but now she thinks it might turn out to be a blessing in disguise. So... I'll roll with it. As long as she is cool, i'm cool. (PS: Is it weird that I am really really proud that we were featured FRONT PAGE, but also super angry of my incredible stupidity here?)

3. Today was the LAST day that mama bear received chemo before we start this crazy, wacky journey that is the "Autologous Stem Cell Transplant". It almost seems surreal. This abnormal routine has become such a constant fixture in our lives that it almost seems unnatural that we have stopped chemo (hopefully FOREVER AND EVER). Wow, I NEVER thought i'd see the day where I admit stopping chemo seems unnatural. Who would have thought? NOT I!!! Needless to say... Today is a monumental day for us.

4. I found out later on that PEREZ HILTON gave us a shout-out on Twitter, asking all the little monsters to join our cause, personally tweeting GAGA as well! Incase you weren't aware, this guy has a HUGEEEEE following!!! More than 2 MILLION followers on twitter!!! So to get M.A.M. on that kind of platform was BATSHITCRAZY!!!! Within half an hour of his tweet, we had more than 100 members join our group from all over the world! How amazing is that?!?! Little monsters globally uniting for a good cause. It's a beautiful thing. (PS: THANK YOU to whoever let Mr. Hilton aware of our event!!!!!)

5. (This week) I'm JUST getting over the cold (I know, WHO gets sick in the middle of SUMMER?!). It was one of those ones where you start of with a sore throat, then a cough, then fatigue, then faucet nostrils. Thankfully, i'm over that pain in the arse, but I think I might have accidentally gave it to my brother (oops) :( Perfect timing, eh? Well, while we were in treatment today, my mom's white blood cell and neutrophil (which go hand-in-hand usually) count were slightly above the normal range. Upside is, her immune system is working great! Downside, that could have been a sign that her body was creating an immune response to fight off something. NOT.GOOD. We need to get that down a little, which means my brother will probably have to be quarantined for the duration of his cold.

So YEAH! That's pretty much what's been happenin'! Monsters Against Myeloma is kicking into high gear now, so i'll DEFINITELY be updating more on that soon!

Hope everyone is doing well :)

Health, Hope, & Happiness

L

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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Vitamins and Supplements and ReallyAnnoyingBloodTests, Oh My!

So, as I posted earlier, we started seeing our nutritionist/alternative practitioner recently. So far so good. The following is a list of recommendations provided for us to keep in mind:

Tests

There are a couple tests that we've decided to perform on my mom to identify certain conditions in her body. Besides the typical CBC work done from our regular blood tests, we've also gone ahead with one called a "Urine Toxic Elements Test", which is used to identify the presence of any toxic metals within the body. Basically, you're hooked up to an IV (pretty much my mom's BFF at this point) that contains a liquid that draws out the metals in your body and helps excrete it into your urine (which is collected and shipped off to the US for analysis). Simply put, you're given what is called a "chelation" agent. It was important for us to do this during our week off because, as mentioned, it draws out metals from your body. That combined with chemotherapy would be too much on the body. I'll keep you posted on our results, which take about 2-3 weeks.

The other tests that were recommended to us included a "Comprehensive Parasitology" (identifies organism imbalances within the digestive tract) as well as a "Comprehensive Bio-Terrain Test" (determines the balance between the major regulatory systems in your body, allowing for a more precise dietary and supplemental recommendation). Unfortunately, we couldn't go through with them, and won't be able to until we have a good long break from chemo. Chemo basically effs up the results and skews the information you receive from these tests, soo we'll have to put these on the back-burner until ... WE ARE IN REMISSION! (*positive vibes/spirit fingers-motion*)

Diet

Basically, we just have to continue what we've already been doing. That is, eliminating flour products and gluten-containing grains (i.e. wheat, rye, oats, barley) as much as possible, eliminating sugar/sweeteners and refined foods, and cutting down on our red meat consumption. In terms of what we are to add to our diet, more organic and free-range foods, as well as raw fruits and vegetables (blended, juiced, or chopped up). Oh, and of course, PLENTYYYYYY of water (even if it forces you to be in constant close vicinity of a washroom.....which it does). In addition, cooking our food with olive or flax oils, or if you want to get all fancy pantsy, coconut butter, butter (ok, not so fancy) or clarified butter (ghee).

We were also advised to purchase some sort of "green" drink (ex. wheat grass or barley grass) or powdered green drink (ex. Pure Synergy, Berry Greens, Greens Rx). We bought the Berry Greens and Greens Rx and are very pleased with it. It seems to keep my mom's energy levels up and, more importantly, consistent. No peaks and valleys, my friends! I know fatigue is a huge issue with cancer patients, so it's something that we needed to address.

Vitamins/Supplements

Wobenzyme PS: enhances natural killer cell activity and immune communication. It acts as an antiinflammatory and stimulates your immune cells to focus in on cancer cells.

Avemar: enhances natural killer cell activity while reducing cancer cell DNA synthesis and repair.

A.H.C.C: improves immune strength during chemotherapy. It is derived from a type of Japanese mushroom.

Vitamin D: 8000 I.U./day(!!!) There is a TON of information on vitamin D, specifically D3. My most-recent "WW" post had some information about it.

Salvestrol Platinum: related to resveratrol, they promote cancer cell death (apoptosis) via activation of CYP1B1.

Chemo Support Formula: keeps the liver, kidneys, and nervous system strong during chemotherapy.

Therapies

Vitamin B12 (methylcobalamin): promotes normal cell division and growth while supporting nerve health. Specifically, these would be used to help with my mom's peripheral neuropathy. She's just starting to feel the tingling/numbness associated with the condition, so we thought it best to catch it early before any kind of permanent damage was done.

Modified High Myer's IV Cocktail: ensures basic nutrient needs are met. This is what we were receiving when I posted earlier today from the nutritionist's office! It was very interesting, actually. Basically, it's this little IV bag (once again, BFF...) that you're hooked up to that gives you, as the name suggests, a "cocktail" of different vitamins and minerals to replenish what your body is lacking. The nurse told us to note how much fluid was in the bag if my mom started to taste or smell something "vitamin-ey". Right away, my mom reported it within a couple seconds of administering the fluids. Initially, I thought that this would be a bad thing. But then the nurse told us that was an excellent sign as that meant that my mom's vitamin B levels were up to par and doing well! Yeeeeuh! Also something to note, after receiving the cocktail today, my mom felt pretty much energized throughout the whole day right up until around 1am. Hopefully that is the cocktail at work. HOPEFULLY. One other thing to note is that it is a water-soluble solution. From what I gathered, that means that your body takes what it needs from the cocktail and then excretes the rest through your urine within about 24 hours. This is important because it means we don't have to wait until our week off to receive it. If we administer the solution a day before chemo, that should give my mom's body ample time to absorb what it needs and get rid of what it doesn't so as to not possibly interfere with the other drugs. Correct me if i'm wrong?

Far Infrared Sauna: enhances tissue detoxification and elevates core body temperature which is known to slow cancer cell growth.

PHEW! that was a.LOT to get through! Now, out of that ginormous list, my mom decided that, for now, she would only pursue the basic dietary "rules", vitamin D (new dosage), B12 shots, and the Myer's cocktail. We were given this list of recommendations at the same time as when we were taking Revlimid for the first time. To be safe, we thought we would avoid all the other stuff (as most of them deal directly with the cancer and chemo) so as to not skew the results on how effective the Revlimid was. So, that's pretty much where we're at. I know it's a lot of information, but hopefully it helps you in some shape or form. Most importantly, our nutritionist is helping us plan for how best to recover from the transplant as quickly and safely as possible.

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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True Life

Mtv's "True Life" started off a brand new season with an episode that I am sure all of us can relate to. For those of you who are unfamiliar with this show, it is basically a documentary series that follows the lives of people, from schizophrenics to shopaholics to embarrassing parents. It is a fascinating and wonderful show. The premiere episode of the new season is titled "True Life: I Need A Transplant". I highly recommend you give it a watch. Although, an advanced warning if I may, don't watch it in front of anyone you want to impress, unless you'd like to do so with puffy eyes and a drooling nostril. It's very emotional (or maybe I am just an emotional person). Not gonna lie... I am terrified of the transplant procedure we are planning to go through this summer. My feelings towards it are a mixture of pure dread and anticipation, because I know it will do my mom wonders. In the long run, it is a small price to pay if it will mean a remission that lasts 1, 2, 5, 10, 15, 20 years. Just gotta be strong.

Provided is a link to the show you can watch online. Note, this is the Canadian website. If you can't access it, try going to mtv.com, then shows, and search True Life. Should be there. Enjoy!

True Life: I Need A Transplant

Standing Ovation

Also,

Another member of the ListServ posted this earlier today. I love it!

There once was a woman who woke up one morning, looked in the mirror and noticed she had only three hairs on her head.  'Well,' she said, 'I think I'll braid my hair today.' So she did, and she had a wonderful day.  The next day she woke up, looked in the mirror and saw that she only had two hairs on her head.  'Hmmm,' she said, 'I think I'll part my hair down the middle today.' So she did and she had a grand day.  The next day she woke up, looked in the mirror and noticed that she had only one hair on her head.  'Well,' she said, 'today I'm going to wear my hair in a ponytail.' So she did and she had a fun, fun day.   The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head.  'YEAH!'  she exclaimed, 'I don't have to fix my hair today!'

Attitude is Everything! 

Hair loss is a common side-effect of chemotherapy seen in cancer patients. Although many will often say that "Hair is just hair, it'll grow back", the issue can often run much deeper. Hair is not just hair, it's something that is a part of our personality, like our laughs and our smiles. The hair loss associated with chemotherapy is a strong symbol of a cancer patient's plight. Because momma bear is due for a stem cell transplant sometime in the summer, this is an issue that I have been thinking of quite frequently. Before all this stuff happened to us, as someone viewing from the outside-in, I used to associate the hair-loss as a sign of frailty and sickness. However, my perspective on the issue couldn't be any more different now. Now, whenever I see a patient suffering from chemotherapy-induced hair-loss, I see it as a true sign of strength. This might sound a bit awkward, but I really do think that this image, this "symbol", is actually quite beautiful. To see someone fighting so hard and willing to do whatever it takes, it is a sign of bravery, strength, and perseverance. One that deserves a standing ovation.

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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Linked!: Tanning & Melanoma

It's nothing that we haven't already heard of, but perhaps a little reminder...

Skin cancer is on the rise... According to the World Health Organization, 1 in every 3 cancers diagnosed is a form of skin cancer. As the article states, "Melanoma is the second most frequently reported cancer in women in their 20s, and it's third only to breast and thyroid cancers for women in their 30s". Melanoma, as you may know, is the most fatal type of skin cancer out there. However, it is totally preventable if we take the right precautions (sunscreen with a a MINIMUM SPF of 15, hats, sunglasses, etc.). Most days, your local weather network will have information on their website in regards to UV exposure at certain times throughout the day. USE THIS! A tan is NOT worth your LIFE!

I've posted a couple of links that may be of interest. Two are from the World Health Organization, and provide a good, basic outline of UV exposure, tanning beds, etc.

The other is an article I came by about a woman that was diagnosed with melanoma at the age of 22. She passed away at the age of 26... SERIOUS wake-up call people!


http://lifestyle.ca.msn.com/health-fitness/health/hearst-article.aspx?cp-documentid=23560427

http://www.who.int/mediacentre/factsheets/fs305/en/index.html
http://www.who.int/mediacentre/factsheets/fs287/en/

Revelations & Tribulations

It's a little late right now, but I can't sleep (oh who am I kidding, I can sleep like it's nobody's business). There's just stuff on my mind that I need to let out.

It's been a little while since I posted anything in regards to treatment or myeloma-related. Life has been pretty consistent lately, nothing exciting. But I guess boring is good for now, right? Last week was the end of cycle 2, which felt like it went by in no time! February, in general, seems to have flown by! Good news is, the Velcade/Dex regimen seems to be doing its job and will hopefully continue to do so! M-spike levels are down by about 30% since diagnosis, which is pretty great considering we've only just finished our second cycle! As far as side-effects go, we've been blessed. And I'm thankful for every little blessing each day has given us. Aside from the obvious, my mom (and our family in general) hasn't been this healthy in a LONG.ASS time! She no longer needs to take iron supplements and her blood pressure is sitting at a very optimal level (around diagnosis, it was as high as 180/110!!! Now it hovers anywhere between 95/55 to 125/75). Things are, undoubtedly, a lot better. Ironically, cancer has forced us all to change for the better. We are stronger physically, mentally, and spiritually. Body, Mind, and Soul.

The other day, I told some of my close friends about the little situation that my family and I are in. A minor setback. I had told others, who are just as close to me, awhile back and it bothered me that I had waited so long to share the news... Which then triggered contemplation-mode. I had once wondered why my mom chose not to share the information with more people. I thought to myself, "if it were up to me, I would have tried to surround myself with my friends and family because I need their support through this". I know that she didn't (and still doesn't) want to tell many people because of all the commotion and stress it can cause on others (especially the grandparents), stuff like that. But it dawned on me the other day that the main thing that was pulling me back from telling my friends earlier was just simply because... It hurts. I'm not less-closer with these friends than the ones who already knew and am, by no means, in denial (I am trying to be as proactive as possible).But I realized that, for me, it all came down to the simple fact that it hurts every time I have to tell the same story. No matter how many times you tell someone that you or your family member has cancer, it doesn't really get easier. Every time I have to acknowledge that fact, it stings and it leaves a feeling of emptiness inside that brings you back to that "oh yeah" moment where you remember how serious the circumstances really are. It's like opening up scar tissue that has just finished healing. It's a wound that will never fully heal.

Despite that little revelation, I'm glad that I did it anyways. I'm not sure if this is how my mom feels, and I don't know if it will ever get any easier. In fact, this whole path that we've been shoved onto has been full of ifs, buts, and i-don't-knows. But what I DO know is that we've made it this far and are stronger than ever. I used to be a fairly pessimistic person, preferring to be safely negative than run the risk of being optimistic and disappointed. Complaining was something that I rather enjoyed, embarrassingly enough. But I've come to realize through all of this that there is always a good in every situation. How does that saying go again? You will always be able to see the light of a candle, even in a world full of darkness? My thoughts exactly. I'm taking baby steps here on what will undoubtedly be a long and arduous road. Will I ever be happy when I am complaining? I think not. And I want to be happy my friends, I want to be happy.
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Just Breathe

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

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