Ra Ra

You ready Salt Lake City? Paws Up... ;)

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

Lying in bed right now, trying to rest my body, my mind, my soul. Tomorrow is the first day of school. It's a bittersweet experience for me. On one hand, I'm genuinely excited to be going back (yes, you read that correct). I haven't seen a lot of my friends in a while, so it's something that I'm actually looking forward to. Last term, I dropped out of school to stay at home and help take care of my mom. There was no questioning my decision and I am so glad that I did it, even if it meant that I would be graduating a term later (in the grand scheme of things, this is a teensy weensy blip on my radar). To me, going back to school just wouldn't have been right, especially when *we* (I highlight this because we all faced the challenges TOGETHER, as one) were diagnosed just days earlier. My decision to stay meant that I would be out of school for almost nine months. To put that into perspective, I have never taken that long of a break from school since before kindergarten! So, I am happy to be back, not only because I get to see some great familiar faces again, but also because it means there will be a sense of normalcy again. In a day and age where people strive so hard to be different, I pray to be the same. In this sense at least. But the experience also leaves a bitter taste in my mouth because, while I am here trying to be happy that I am back at school, my mom is back at the hospital (3 hours away) recovering from an autologous stem cell transplant, with my dad by her side. I've been with her since the very beginning of this roller coaster journey, through all the ups and downs, the triumphs and struggles. It doesn't feel right to me that I leave her now, at SUCH an important time. The scheduling of the transplant and the start of school was a little shitty. Driving up for school, I felt this resounding sense of guilt inside me the whole three hours. I know I'm not, but it almost feels like a sense of abandonment. On the plus side (because we must always remember that there exists one), ill be driving back down to see her on the weekends at least for the month of september. So, that makes me feel a little better. I guess what I'm trying to say is that I want to be by her side and see her through this until she's in the clear. We start together, we finish together. But my dad is there and gives her a surplus of love and attention. her progress so far has been not too bad. I don't think people can heal properly (or at the very least, it is slowed down) when they are in the hospital. The docs let us take mama bear back home for the weekend after the transplant and she did pretty great. Yes, there has been nausea. Yes, there has been vomiting. But it's actually not as bad as we thought it would be. If taken in the correct doses and time, anti-nausea medications can make an enormous difference. Her appetite took a nosedive, but that was expected. Ensure seems to be the only thing that she can tolerate on a consistent basis. It's not the best, but right now, a calorie is a calorie, and we don't have the luxury of being picky and choosy (healthy vs. Not-as-healthy). Today, however, my prayers were acknowledged. I've been praying that God ease us of our pains and struggles and give us strength, give us health, hope, and happiness. But last night I decided to take it a step further and go into specifics, for my mom to get her appetite back, for her nausea to go away, for her to have enough energy to exercise and move around. Well, when I called my dad today to check in and see how things were going, he told me that he was on a food-run for (get this).... ETHNIC FOOD. Specifically, seaweed and rice hahaha (a korean comfort food, you understand). Before, my mom could barely stomach plain, boring broth. Now she's asking for seaweed and rice!?!? Her appetite MUST be back. Not only that, but she also sounded GREAT on the phone, bright, loud, and full of energy, a typical family trait (emphasis on the loud). She also told me she did four laps around the ward with my dad, so she got her body moving too! (13 laps=1K). So, for any family members reading this post, mom is doing better :) I'm hoping that everything stayed down for the rest of the day. Tomorrow she receives her first G-CSF shot, post-transplant. If you remember, she was given these before transplant to help mobilize her stem cells, so much so that they were pushed out of the bone marrow and into the blood from all the buildup. Well, now that she is post-transplant, that means that her stem cells were completely wiped out (which is why we collected them before to put them back in after) from the chemo. The G-CSF stimulates her small supply of re-introduced stem cells to start producing WBCs, RBCs, etc. I'm not quite sure yet, but I **think** this might mean that she is neutropenic (zero neutrophils aka WBCs). If so, then that means the worst is OVER. Now, the road ahead is just a matter of recovery and rebuilding her strength, health, etc. Did I mention that its also DRUG-FREE!?! Its a great opportunity to really take advantage of, and something that we all look forward to. To only have to focus on healing the body and not have to worry about drugs and side effects? 'Tis a gift and a blessing.
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Upchuck

This.

is deplorable.

HOW do they expect you to recover if they're feeding you... poo.

*I* don't even want to eat this, so why would someone that has nausea and little appetite want to???

Believe it or not, this delectable dish is supposed to be some sort of pot pie (I think...)

Hmmm *thought*

Maybe we can try to install some sort of quality, nutritious, appetizing food program in the hospital? Cause lord knows THAT shit ain't cutting it. Calling Jamie Oliver!!!

Britney Spears II

Before

Ryan!

After

Monsters Against Myeloma!

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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