The World of MM

Ok, so I FINALLY figured out how to find all the e-mails I flagged on my phone, which I had meant to relay onto the blog. They’re all basically messages that I thought would be of interest and importance in the Myeloma community.


1. First off, Mike Katz, the moderator of the ACOR ListServ, messaged all the members not too long ago on the issue of myeloma stem cells. It’s a very hot and heated issue in the MM world, as there are many on both sides of the fence in this argument. Basically, what this is referring to is the debate that there exists stem cells with a myeloma blueprint, allowing it to “resurface” or relapse following a transplant or chemotherapy. The argument goes on to state that we’re basically hitting the bulls-eye on the wrong target. Yes, these drugs may be very effective against current existing myeloma cells in some people, but instead, our focus should be on developing treatments to cut off the myeloma at its root, in the stem cells, to prevent myeloma cells from ever coming back. The trick is HOW we’d be able to discriminate between normal, healthy stem cells and myeloma stem cells, and ensure that these two would be clearly and concisely separated from each other. It’s a very important issue, as stem cells are not an unlimited resource for patients. From what I have read and seen, most patients will be able to harvest enough stem-cells for about two transplants. So. When and how to utilize these stem cells is a critical matter, and literally, makes the difference between life and death. I’m all for the research. Not that I am anywhere CLOSE to being a scientist by any means, but the theory behind all this seems to make sense. It’s uncharted territory. Who knows, maybe this’ll be the holy grail of what the Myeloma community finally needs to find a cure? So, provided are two videos from the IMF (International Myeloma Foundation) on the matter.


LINK
2. A fellow ListServ member posted this a while ago (Nancy!) The National Comprehensive Cancer Network (NCCN) posted their guidelines on for patients on treatment strategies for Multiple Myeloma. From the looks of it, it looks pretty comprehensive. But, a very resourceful tool for patients to use. You can find the site HERE. NOW. With all that being said, I just want to reiterate something that I believe is very important for patients, especially new ones, to know. When you’re first diagnosed, often times the first question you’ll ask is in regards to the prognosis, how long you have to live. Well, i’m sure some have their reasons for doing so, and I respect that. But in my opinion, I think it’s a huge waste of time and energy. The thing is, with the extremely rapid pace that science is moving, any statistics on prognostics are constantly becoming outdated because of how fast research is going. So don’t listen to any of it. Nothing good comes out of it. And honestly, do you REALLY want to know? It’s a GINORMOUS ball of stress and pressure to live each and every single day out of however many years you may or may not have left to the fullest. Prognostics are bad news bears, in my opinion. 


3. I can’t offer too much advice on this matter because my Dad is the one that handles all the finances of this stuff. But you don’t have to be affected by cancer to know that financing treatment on your own, without any assistance whatsoever, is not an option. A ListServ member (Dianne!) mentioned a website that I think many will be able to utilize. Laurie Todd is a cancer survivor and has a site titled “The Insurance Warrior” that deals with a lot of insurance issues and money matters. Take a look. 


4. Lastly, it’s been reported (again, thanks Dianne!) that Bortezomib (Velcade) can cause severe irreversibe bilateral hearing loss. I haven’t had the chance to read it over just yet, but the link is HERE if you would like to check it out. 


That’s all i’ve got for now!
Hope it helps


L

Nice and Normal

I know that tandem stem cell transplants and chemotherapy have saved my life… and I feel so blessed to live in a time when good medical treatments are available for this disease. I would most likely not be alive today without them. These medical advancements have ridden my body of any visible signs of myeloma, but they have also left much peripheral damage. A weakened body and immune system, some neuropathy, and the various side effects I have had to deal with…………But what I really am trying to say is that…………..

One of the miracles in this crazy life I have endured through all of this is to see and feel my body (as well as my mind and spirit) begin to heal. Isn’t it amazing and wonderful how the human body functions? How our bodies are generating new growth every minute? How my body can grow stronger everyday?

After over two years of transplants, transfusions, and treatments, I have finally begun to feel normal!!! I am getting some energy! I am going days without pain! I can wake up in the morning and have a normal day!! Cancer does not weigh on my mind every waking minute.

I can clean my house, play with my precious grandaughter, do laundry, run errands, and fix dinner all in the same day!!

I have always been thankful for the big, exciting, and eventful days. Those days to capture in pictures and scrapbooks… Graduations and weddings. Birthdays and the birth day of my Grandchild. I am so grateful for those. They have kept me going. They have given me steps and goals and notes on my calendar to look forward to.

And now my “life tutor”–cancer has taught me to appreciate the normal, ordinary days that build me and shape me and bless me.

Truth?

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

Cheers

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

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

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…

Sent from my BlackBerry device on the Rogers Wireless Network