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

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

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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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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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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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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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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A Frog for a Friend

In any kind of situation, you have your good days and your bad days. For the majority of our treatment so far, things have been going quite excellently. Velcade and Dex have not limited my mom from being active and going for daily walks, catching some fresh air, and just being optimistic and happy. The last two days however, not so much. I'm not sure if this is something that we should be expecting with treatment, but fatigue would be quite the understatement. Her body is in so much pain that she needs assistance walking, getting out of bed, and sitting down. Sleepless nights follow long days, leaving us all thoroughly exhausted. Ironically, she is in more pain in the mornings (after sleeping(=rest)), than in the evenings. We were even at the point where we were set to take her to emergency because we thought she might have fractured something, due to her pain. It scares me... A lot. But I'm going to try and stay optimistic and hopeful here. We all are. Sometimes, that's the only thing that keeps you going, hoping that tomorrow will bring you a new day devoid of any (or as much) pain and stress as today and yesterday. Hope.

In other news, I decided to buy my mom a fish to cheer her up. I'm not sure if it was maybe the medication talking, but on the way home from treatment the other day, she said she wanted a fish. We thought she meant sushi. But no, a fish. Like a pet. So I went to the petstore and came home with a bright red fighting fish.... and dwarf frog. Random, I know. But I will go to the ends of the earth for her, and yesterday that meant the pet store. Have yet to name them, but they're quite the pair. At first, the fish got a little "wtf" which I guess would be normal, considering it went from living in a tiny little cup with only itself for company, to a huge vase with a frog for a friend. But now its used to it :) However, today I fed them and the fish got to a lot of the food before the frog. I think that might have ticked it off because the frog proceeded to give the fish a couple nips before swimming under a rock to be by its bitter self. Quite the pair huh?
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Bring It On!

Tomorrow (or I guess, today) is our first round of chemo treatments (velcade).

A lot has happened since we were at the Tom Baker Cancer Institute (TBCI), and i'll update you later on that bit. My mom is a little nervous, but I've seen a change in her. She's... getting stronger. and I couldn't be happier. She's ready to fight and kick this cancer in the ARSE! yeeeeuh! MM can kiss it, because we're ready to rock it!

The Information Age

Tomorrow, or rather today (in about 7 hours! Need to sleep!) is our second appointment at the cancer centre. I’m not exactly sure what we’re going to be doing… More tests I’d imagine. I think we’ll probably go over the biopsy results and make a diagnosis. I’m a little scared… Regardless of the prognosis, we still have to hold our heads high. But I worry about her… She’s fragile and vulnerable right now. Understandably, she is still overwhelmed. But… I just wish she was a little stronger right now. She doesn’t really make too much of an effort to get any information about MM because she’s scared. And I know that it is scary. But what’s scarier is not being informed about a disease that you have. Not being able to make well-informed choices. She has my dad and myself to do that, but… as a patient, I believe that it is her responsibility to know as much as she can about her condition. Certain symptoms and side effects can only be noticed by her. What I mean is, she knows her body the best. My dad and myself won’t always be able to know how she is feeling or if we should be concerned about an ache here or there. I’m trying to get her to understand this. And we’re taking small steps. But it’s… it’s just all very frustrating. This whole situation. There are times where I will just catch myself in a moment. Sometimes, a moment where I can’t help but wonder, “what did we do to deserve this?”, even though I know this disease is not based on good or bad karma. I don’t think it has quite hit me completely yet. I still cannot believe that we’re in the situation that we’re in. Cancer… it’s a disease that’s only supposed to be in newspapers and movies. Not something that we have to endure. It’s incredibly unfair, but life, I guess, is not fair. You just have to make the best with what you’ve got and go from there. There are other moments where… I just get an overwhelming wave of grief. Or perhaps sadness is a better word. It’s a mixture of things. Loneliness, anxiety, depression. I look at my mom, and it just breaks my heart. You really don’t know how good you’ve got it until it’s taken away. Now, the simple things are the things that we hold onto the tightest. Family time, smiles, laughter, walks. Every time I see her laugh and smile, it just means so much. I know that there are people that I can talk to, family members, friends, support groups. But I feel like I can’t talk to people. Or maybe I’m just scared to… We don’t want this getting out because if it did, everyone in this town would know about it. And that’s not the kind of attention and focus we want right now. But I wish I could just talk to my cousins or friends about it right now and just… be able to pour my heart out. Because this experience has been like no other. My heart has never ached so hard and… it’s just… I’m so afraid… I’m terrified. I try not to think about it, but I can’t live without her. She’s been the glue and sunshine in my family and has always been in such good health. This whole thing came completely out of nowhere, which is why I think it affected us so much. I mean, cancer would have quite a strong effect on anyone. But… yeah.

So, in response, I try to gather as much information as I can. In nutrition, in side effects, in whatever way I can help to the best of my abilities. Some of the books I’m reading have confused me a little. They’re views conflict with the views of the “standard of care” medical community. While chemotherapy works by destroying cancerous cells, it also takes out the good ones as well. The views and approach that these doctors and authors take is one where you use your body’s natural defenses to battle, or at least maintain, cancer. These perspectives are on opposite sides of the spectrum, and to a patient or a family member it’s all very confusing. On one hand, you have a system that has scientific backup and research going into it. On the other, you have another system that breaks it down into the basics, using nutrition to fight your battles. What irks me is that there are claims that this business of cancer is hugely profitable, and as such, the major pharmaceutical companies have no real incentive to actively find a cure. These are the pharmaceutical companies that fund and train students in med school, our doctors of tomorrow. What they say, goes. But… could people really be that.. evil? Millions of people have died from this disease, and it would be tragic if their lives could have been considerably different if money wasn’t in the picture. Are these pharmaceutical companies really looking out for our best interests? One must remember that they are running a business… All this information is so confusing and leaves you torn on which direction you should go. Because whatever decision you make will literally be a life-or-death decision.

Currently, i'm primarily reading two books: Knockout: Interviews with Doctors Who Are Curing Cancer and How To Prevent Getting It in the First Place by Suzanne Somers, and Anti- Cancer: A New Way of Life by David Servan-Schreiber, M.D., Ph.D.

Both have been incredibly informative. I think being a patient (or a family member of a patient), you have to be willing to keep your mind open. You have to be willing to listen to what others have to say. You don't have to necessarily agree with them, but at least listen. Both of these books place an emphasis on nutrition and fighting cancer with your body instead of chemotherapy. There has been a lot of backlash with this type of approach, especially directed towards Somers, but... Is trying to live healthy, organically, and as naturally as possible really such a bad thing? Even if you do decide to choose conventional methods, I think people should pause and take a moment before knocking this p.o.v down. When you really break it down, these approaches are all about leading a healthier lifestyle. Because changing our eating habits and lifestyle (this means more exercise, less t.v.), it's not going to hurt us. You don't have to agree with the treatment plans that have been highlighted, but the basics won't hurt. Anyways, there are a couple of doctors from Mrs. Somers' book that I have become interested in. Has anyone heard or had any experiences with Dr. Stanislaw Burzynski, Dr. Nicholas Gonzalez, Dr. James Forsythe, or Chemosensitivy tests? Your input, comments, or even thoughts would be helpful to me and others that read this post!

So, to finish off. Here are some random facts that i've learned from reading so far:

- Tumeric (curcumin) is the most powerful natural anti-inflammatory agent out there. Which is good because it inhibits angiogenesis (which is the formation of blood vessels). This is important because cancerous tumors NEED these vessels to supply them with blood flow in order to survive.

- "To be assimilated by the body, turmeric must be mixed with black pepper (not simply with peppers). Ideally, it must also be dissolved in oil (olive, canola, or linseed oil preferably). In store-bought curry mixes, turmeric represents only 20% of the total. So it's better to obtain turmeric powder directly"

- Cruciform vegetables (cabbages, broccoli, cauliflower, bok choy, etc.) contain powerful anticancer molecules that are capable of detoxifying certain carcinogenic substances, promote the suicide of cancer cells, inhibit angiogenesis, etc.

- Avoid boiling cabbage and broccoli. Boiling risks destroying these powerful anticancerous molecules. Instead, cover and steam or stir-fry rapidly with olive oil.

- Tomatoes contain a substance called lycopene that leads to longer survival rates for prostate cancer patients. However, they must be cooked in order to release these nutrients. Moreover, olive oil improves their assimilation.

- Soy isoflavones block the stimulation of cancer cells by sex hormones and intervene by blocking angiogenesis. However, isoflavone supplements have been associated with an aggravation of certain breast cancers, but this is not the case for soy taken in food.

- ** The genistein in soy can interfere with Taxol. While awaiting confirmation of this interaction from human studies, it is advisable not to consume soy-based foods during chemotherapy with Taxol. Stop several days before, and start again several days after treatment**

- Green Tea contains substances that reduce the growth of the new vessels needed for tumor growth and metastases. It is also a powerful antioxidant and detoxifier. Note that black tea is fermented, a process that destroys a large portion of these anticancer substances. Oolong tea has undergone a kind of fermentation midway between green tea and black tea. Decaffeinated green tea still contains all its polyphenols (anticancer substance).

- Japanese green tea (sencha, cyokuro, match, etc.) is even richer in EGCG (another anticancer substance) than common varieties of Chinese green tea.

- Green tea must be steeped for at least 5-8 minutes - ideally ten minutes - to release these substances.

These facts noted above are just a few of the many that I learned from reading Dr. Servan-Schreiber's book. I highly recommend reading it, if not for alternative treatment purposes, then for tips on how to lead a healthier life.

However, on one note. I had discussed some of these with our oncologist and he had told me that a recent study was published where green tea had actually shown to COUNTERACT chemotherapy. I'm not sure what type of chemo, specifically, (we're going to be starting Velcade very soon, so I assume this is one that is affected by it) so I think it would be best to work with your doctor and see what he/she has to say.