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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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

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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7:0

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

It is quite a profound experience to have to shop for scarves in preparation for chemotherapy-induced hair loss. It is inspirational. It is crippling. It is beautiful. It is tragic. And despite the months and months of treatment, the time you've had to prepare, one never actually thinks they'll see the day. And before you know it, the cold reality is right there staring in your face. Slap. The other day I went shopping with my mom for scarves to wrap around her head once she loses her hair. Let me tell you, a book should be written on how to wear those things, because it is practically an artfrom. What length do we get? How do you tie it? What materials work best? Finding a way to wrap the scarf itself, without looking like a fool, was difficult enough. Long story short... We decided to go with a hat instead :P. I have read that your scalp is actually much more sensitive than you think, that having hair makes a world of a difference when it comes to warmth and sensitivity. We decided to go for a nice, soft, and very warm rabbit fur touque. Thankfully, my mother's recovery time will be during the winter, so it will not be an odd sight to see.

Presently, I am in the waiting room of the radiology department. Today is the day that mama bear is getting her central line put in. Last night I experienced a small moment of weakness before eventually falling asleep. I think I am more scared and anxious about this procedure than my mom is. As many caregivers will discover, you will experience varying degrees of control over the course of treatment. Control is very important. It makes you feel like you are able to stand on solid ground, feet planted firmly. But sometimes, you feel like you have been picked up in a whirlwind of despair, anxiety, stress, etc. Being tossed about upside down, left, right, back, and forth, a complete loss of control. Last night's "whirlwind" stemmed from my...sadness for my mom. I try not to feel sorry for my mom, for my self, or for my family, because it does you no good. It prevents you from being able to think straight and act effectively. But sometimes, it happens. As a caregiver, all you want to do is protect. As my mother's son (or in other people's cases, as a son's mother/father), you try to protect with such a fierce passion that you are willing to do whatever it takes. If you could, you would share the burden, take the burden, in a heartbeat. But you can't... And that is the pain and the struggle of a caregiver. It is a constant tug-of-war between control and mayhem. My fear and my despair from last night stemmed not from the actual transplant procedure, but from the worry of how my mom was handling this. Everyday, no matter how bright the sun shines, my heart breaks. I worry about her. Worry, worry, worry. My heartache comes from the thought of her fear. It is like if you saw an abandoned child on the street. Your first wave of worry is not about the living conditions, the hygiene, etc. It is about how the child is coping and able to draw the strength and will to survive. Seeing my mom's strength is inspiring, but it also breaks my heart. The fact that she even HAS to draw so much strength from god knows where, makes me both sad and proud. It is a hard experience to describe. But I guess it is what it is, and all you can do is learn how to adapt and stay strong. Wish us luck.

**Update** All went well! The transplant nurse was right, a CVC (Central Venous Catheter) insertion is MUCH less painful than a bone marrow biopsy. So if you can handle the biopsy, the CVC should be a cake walk for you ;)
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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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