Thursday, January 13, 2011
Oh Happy Day!
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
Wednesday, November 17, 2010
Truth?
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Tuesday, November 9, 2010
Wish Bone
Tuesday, August 17, 2010
BAHHHh1!!1
Tuesday, August 10, 2010
The Harvest II
Up again! Here's to round 2! And THIS time, I actually went to bed at a reasonable hour! No zombies to-day!
8:50AM
I lied. Why was I so perky this morning? Me=zombie. We got some good news though. We're just about to start the harvest today andd our lovely nurse told us we collected about 400 million stem cells instead of the 200-something we had previously thought. From my understanding, one transplant takes about 275 million stem cells. So by the end of yesterday, we were closer to the two-transplant mark for the amount of cells we collected than we were for the single transplant. Two transplants take about 550 million stem cells, so we're getting there! If we can collect even MORE, that would be great! Waste not, want not right?
12:00PM
This is the "colorgram" that the transplant nurse uses while she is monitoring my mom. The tube in the middle is supposed to be a color that is in between the third color from the right and the third color from the left. As you can see, the tube is a bit dark, so some adjustments had to be made.
2:ooPM
TRANSPLANT IS OVAAA! We don't know our final numbers yet, but we've collected somewhere between 600-700 million little warrior stem cells! That is DEFINITELY enough for at LEAST 2 transplants!!!
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Monday, July 19, 2010
The Big T
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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Wednesday, July 14, 2010
Biopsy!
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Wednesday, May 26, 2010
And So It Begins...
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Thursday, May 13, 2010
Vitamins and Supplements and ReallyAnnoyingBloodTests, Oh My!
Tuesday, May 4, 2010
No Pee
I saw this little note in the bathroom today and thought it was cute. I'm sure you can all relate to the pains of this test. Last time we forgot to collect, and the whole test was RUINED! It's enough to throw someone into a conniption fit of epic proportions.
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Thursday, April 1, 2010
An Interesting Day...
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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Thursday, March 11, 2010
Revelations & Tribulations
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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Wednesday, February 10, 2010
PRAISE JESUS!
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Tuesday, February 2, 2010
It's A Beautiful Day
Another day of treatment. I FINALLY figured out how to semi-read these darn blood test results. Moms CBC is pretty good, hovering around the normal range, so that's good. Finally discovered where the M-protein (one of the primary means of "tracking" your progress/treatment) is on the sheet as well. Its labelled as monoclonal protein. Alas, it was further broken down into type 1 or 2, which I have yet to understand. Getting closer though :)
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Friday, January 29, 2010
Update!
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Tuesday, January 26, 2010
Herrre We Go!
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