Saturday, September 24, 2011

Week 2 Ups and Downs

Laying here in bed at 3 am...obviously NOT sleeping. Figured I could share how this week went. Instead of starting into the back of my eyelids being frustrated that I am awake, I will be grateful that I am just uncomfortable at the moment, and not in pain. That is a huge improvement over the last couple of days. I also love that I can blog from my phone!

It all started out great this week. Tuesday's treatment went well. My friend Brandy took me and I didn't have any alarming reactions. Just mild things like fatigue and slight fever that I can pretty much sleep off with a nap. I taught my Zumba Fitness class that night and I felt like my energy was pretty good and class went well! I get very encouraged by that! Sometimes my breathing is affected, but I can usually use focus to get past that.

Then Wednesday came. Oh boy. See, they increase the doses of both of my medicines each time I go until we reach full dose. So I really never know what to expect. Always changing. On wednesday I was with Kerry, and I was having some of the harder reactions that I had experienced last week.

The PME is what they call a "push" because it simply gets pushed through my port. Takes about 5 seconds. But the reaction hits about an hour later and can be wicked. Happened once last week, and again on Wednesday.

First comes the hot/cold feelings. It is interesting because I start to feel very cold and my body will shake. The shakes can be kind of alarming because you can't control it and they can get going pretty hard. I put socks on (because Arizonans typically don't wear socks unless forced to) and wrap up in a blanket. That's the cold part. The hot part is that I start to run a slight fever also.

The second part of my reaction to the PME is that I hurt. I hurt all over. Flu-like muscle pain x's 10, that goes deep into the bones. I feel it from my face to my toes. Kerry, being frustrated sitting there watching my writhe around in my chair, started to massage my back and shoulders. This proved to be a great help! I was able to relax and distract my brain long enough to avoid taking pain medication. Which, if you know me, I will only use as a last resort. Thank goodness for Kerry's wonderful idea!

Then there is the second medication that I get called Polly MVA. It is given as an IV drip and takes about 2 hours. This is the one that brings the fatigue and usually a mild headache. I use a homeopathic medicine to help ease the headache and again, just try to relax.

So, even with all those reactions, I made it through treatment ok and after a few hours of being home I started to feel what I call "functional". I'm not totally useful, but I am happy and can do most things for myself. Cook, drive, etc. It was good timing too because the first fundraiser for me was last Wed.

Brandy put on a super fun Lia Sophia jewelry party. I was looking forward to it. I went and had a great time, although that's when the worst headache of my life started. I didn't know it would be though. As I started to feel my head hurt a little I just thought I was tired and needed to rest. So I sort of ignored it. I don't like to let how I feel control too much of my life. Yep...I can be a pretty stubborn girl!

So I stayed. Probably a but longer than I should've, but again...stubborn. Once I got home (no I didn't drive) things did not improve. Sleeping was something that I wanted badly, but I only got an hour at a time. The pain in my head and face were so excruciating it made me nauseous. I couldn't walk, only slowly crawl. At this point we took out the strongest pain medication that we have. 800 mg Ibuprofin tablets. Didn't even touch the pain. I was starting to panic as I could see no end to my suffering. Thank goodness I wasn't alone. My sweet Jess was awake all night too. Trying to help me, but of course I could find no relief. There was nothing he could do but be there for me.

Eventually the night ended and Thursday came.  The pain was slowly starting to ease up, but it took about 4 hours for me to feel will enough to get out of bed. Jess stayed home from work and got the kids off to school. I got better and better as the day went on and, though I didn't make the decision easily, I went ahead and taught Zumba Thurs night. Teaching lifted my spirits and made me feel strong. I felt like it was a miracle that I taught at all, let alone that it actually went well!

Friday. Always a day to look forward to. For me it's my last treatment of the week. But unfortunately it was a near repeat of Wednesday, except the head pain came on strong before I even left the office. Got some string pain medication in me right away this time. I was so scared to feel the full wrath of it again. Because of the medication and the fact that it still didn't take away ask my pain I got a sub for my Friday night class. I appreciate so much when a friend of mine subs for me, but I do try to avoid it at all costs. Thank you Ana for subbing and also to those who still went to class. Means a lot to me.

So that brings me to now. Still relying on pain meds and not sleeping (which is weird because the pharmacist said it WILL make me sleepy).  Hoping that everything goes well with me today so I can go to a Zumba fundraiser being held for me in Phoenix.

Whew! This post was longer than I intended it to be! Well, going to try to rest before I have to get out of bed. Hoping to fall asleep for a quick nap. I hope, I hope!

Tuesday, September 20, 2011

Treatment Day Video Clips.

Hi there. Valerie's husband Jess here. We took some short videos at Val's treatment from last Friday. We wanted to provide a sneak peak of what she goes through during a treatment session. I hope you enjoy these. By the way, Valerie hates videos of herself so I thought I would post these for her.

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Thursday, September 8, 2011

Appreciating "Now"


A calm ocean. Sitting in a boat soaking in the rays. Purely perfect. Waves start to come in. You see they are small. Just the right size to play in! Boogie boarding, surfing and all sorts of water fun. When you have exhausted yourself with playing you get back to the boat to go and peacefully lie in the sun once more. The smell and the sound of the water are so calming.

A bit of time passes you look off into the horizon and you see a storm. Knowing that you need to get to shore where it's safe you start your small boat up. What you didn't see was how fast the storm was coming. In no time it hits your little boat with vicious winds and crushing waves. You hold on and try to press through. But your visibility is poor and getting to shore seems nearly impossible with the boats small engine.

A huge wave hits your small boat and nearly throws you overboard. Choking on salt water and holding onto the rail you don't know what else to do but to pray. Down on your knees you pour out your heart in prayer and ask for help. You notice that even though the storm is still raging a large rescue boat has found you and is coming your way! You say a thankful prayer in your heart and wave your arms in the air. "Over here! Help me!" You welcome the safety of the large vessel. Once aboard the storm rages on, but you now have the help of many people. They have provided you with shelter and nourishment. Friendship and comfort. Peace of mind. Together, this large boat with many people are so much better equipped to handle a storm than you were all by yourself.


That's how life is. Ever notice that we most appreciate the calm waters only after  the storm has hit us? I think the biggest mistake we can make is to not bask in the sun when the waters are calm, but to think, "is this all that life is about? Floating here?"

Do you know what I miss? I miss being boring. I miss my old boring life. And by boring I mean wonderful!

If you are in a place right now where you feel stuck in a rut with things, maybe it's time to be grateful for it. Maybe you get up at the same time everyday, go to work at the same time everyday, eat lunch at the same time everyday...you get the picture. Or maybe it's that you have young children and it's diapers and spit-up, crying and whining, owies and Elmo. Whatever your "rut" is, maybe it's time to see it as a blessing. Calling it a "rut" might not be the best thing to call it either. Sometimes it feels like that, but really it is just a consistency that you have in your life. Things that you know are there and need to get done for your and your families days to go well. Things that, although they may not be the most fun, are important. That means you are important! That means your so-called rut is a HUGE blessing in your life. It's the calm water!!! Love this phase, as it is sure to follow the cycle of life and someday it won't be so calm.

Life can offer different things that add a lot of excitement, different waves. Fun ones like a new jobs, new house, new baby. Those are great! Then there are the violent waves. Illness, loss of a loved one, car accidents and natural disasters. Those are the kind of excitement we don't want and don't ask for. Then when the waters get calm again, and they will, you can look beck on the storm and see all the things that you learned.

My goal is to more appreciate what I am experiencing now. Even though right now I kind of wish my life was a little more 'boring' (read calm), I can appreciate little moments. No matter if you are playing in the nice waves, enduring a storm or just floating along in the calm water, try to take a step back once in a while. It is easy to look back and appreciate something, but can we do it now? Is it possible? Hard sometimes?...Yes! But definitely possible.

Tuesday, September 6, 2011

Ouch...

As I sit here at the computer I all I want to do it walk away from it. The light from the screen hurts my eyes. I have been doing so well...so well until last night. I wouldn't call it a headache, but more like head pain, even face pain. Only on the right side. Hit me hard last night and won't let up. I was hoping I could sleep it off. Nope. When I feel good the whole "you have cancer" thing is kind of surreal. Almost like it's not real at all. But when I'm not it feeling good it hits me like a ton of bricks. With the donations that we have received in only 24 hours I hope to be able to start treatment this week. I will be sure to report when I'm feeling good, and I hope it's soon. I have to teach Zumba tonight...

Monday, September 5, 2011

What a Differnce a Week Makes!

It has been a crazy, roller-coaster ride of a week! I am so glad to have it behind me and to be where I am now. It took a lot of talking to friends and family, a lot of tears, and a lot of prayers, but I am in so much of a better place. I guess there is a period of time when something tragic happens to you, that you have to figure out how not to be the victim and how to take control of the situation. How to break out of that vicious cycle of  "why me" and break into a strength and power that you might not have even known was there. To reach this point I needed knowledge and a plan. Knowledge about what it was exactly that was happening and "a plan of attack", so to speak, for how to handle it. Now that we have both everything will be ok.

I have included a lot of links in this post as I hope you do your own reading on a few of these things. :)

We are going to do things differently this time and hopefully better. The Genetically Targeted and Fractionated (GTF more commonly called IPT) chemo protocol that we used last time worked very well. (Envita calls it GTF because they take it a step farther and make sure the specific agents that they use will work you your specific type of cancer.) It got rid of the 5 inch long mass in my chest. But it came at a high price. Not only financially, but it was very hard on my body. I lost a lot of weight and simple things like eating and using the bathroom became huge successes if they went well, because they usually didn't. And of course having the toxic chemotherapy agents running through your veins is not only harmful to the cancer, but also to the rest of your body. Hair loss is only the most visible symptom. I always said (when I was in remission) that if it happened again I would do it different. Find a different way.

Sadly, as we know all to well, all alternative cancer treatments are frowned on by insurance companies and they will not help. But we believe we have found a protocol that will work for me. First of all I am eating according to the book "The Stupid Diet". Basically cancer likes inflammation and sugars, so I am avoiding as best as I can the things that fall into those categories. I want to drain the beast of it's power! Also taking a butt-load of vitamins and eating organic food to minimize the toxins that I am taking in so my body can focus all it's energy on the task at hand.

Then, as soon as we can, we will hit it through specialized IV treatments. Two different agents will be used.
1. Poly MVA
2. Polymannan Extract (PME)
It just takes a quick google search on both of these to learn more about them.

I will go in to my Dr in Scottsdale (Envita) 4x's a week for about a month. We are hoping that by that time we will see (and I will feel) a massive change in our situation. That the therapies are working. Then we will decide whether to raise more money, or if it would be a good time to switch to an oral form of Poly MVA. We hope that will be the case. This was the case for a young man with lymphoma that they recently helped with a mass much larger than mine on his neck. His family couldn't afford the GTF chemo so they opted for this treatment as it is very promising, has less side effects and costs a quarter of that GTF costs. His mass disappeared and he had his whole life ahead of him.

That's the plan for me too! Thank you for following me on my journey and for helping us out in anyway that you can. Deciding how to go about treatment is a personal and difficult decision. One side of the medical field pushes hard twords chemotherapy and radiation while the other side (all kinds of doctors, including oncologists) advise to stay as far away from it as you possibly can. I have dear friends and family members that are alive today because of chemotherapy, radiation, and the things offered through conventional cancer treatment. I don't want to come off as putting it down in any way. It is just not right for me. I know that with more surety than I can even describe. The decision should be left to each person and family dealing with cancer and one side shouldn't ever look down on the other because everyone is only doing what they think will be best and have the best end results.

I love my life! I love everyday. Lately I've tried to make it a point to "take in" something new everyday. A beauty or a blessing that I may overlook by rushing through life. Just to stop and notice things around you can make you feel closer to our Creator. That is a feeling I treasure. Now to take on today!