For those of you who are on this site to monitor what kind of treatment that I am doing that may be helpful in deciding your treatment plan, I am now adding which treatments that I’ve been doing in between scans on the ‘Health updates’ page.  You will be able to see the effects of the listed treatments based upon the corresponding test results.  Thought that might be helpful…

I recently had a PET and MRI scan done on December 1st.  Both scans are showing the tumor to be stable.  Amazing news!  We decided after the last scan to take out the chemo (Temodar) and just do the natural IV treatment that I’ve been doing over the past 18 months.  We didn’t really feel like we were taking much of a risk because I only did 1 round of chemo in the 2 months before the scan that showed a reduction in tumor size.  Our rationale is that this chemo is known to make these tumors act more aggressively (you can read about this study here), so if we can keep my tumor under control with just natural means, and especially shrink it up some more, then that is definitely the path we want to take.

So the plan now is to keep alternating a week of DMSO, followed by a week of high dose vitamin C.  We won’t resume chemo unless something changes down the road.  My oncologist agreed that this was a good plan, and actually wouldn’t prescribe me more chemo when I met with her the other day.  She thought it was illogical to be on chemo if your tumor isn’t growing when you’re not on it.  What a breath of fresh air she is.

Even though I’m extremely blessed with a tumor that is not acting aggressively, I’ve been struggling with a bit of depression lately.  I’m so ready for life to just be ‘normal’, whatever that really means.  It’s hard not to get discouraged by having to carve time out of everyday to deal with this tumor.  It’s physically and emotionally draining having to do treatment on a daily basis.  My brain tumor is never far from our thoughts.  It’s extremely expensive to do what I’m doing, so the financial strain adds to all of the emotions, as well.  A lot of people in the ‘cancer world’ talk about living life from scan to scan.  It’s not a healthy outlook, but it is one that is hard to avoid.  After I have a scan, I’m already thinking about the next scan not too far down the road.  There are some people in my life that have told me “where’s your faith?”  A very unfair (and insensitive) question coming from somebody that is not being faced with a life threatening illness.  I am human.  I am young.  I have a family that I want to take care of for the next 50 years.  It’s hard not to focus on that.

But I do know that I serve a God that can heal.  He knows what I need, when I need it, how I need it.  Do I believe that he will heal me of this tumor?  Yes!  But until then, I’m going to struggle with my human-ness.  Not everyday is going to be an easy day.  God has been so good to me throughout this journey, so I know that he is there.  He is definitely there.  I am so thankful for all of your prayers and encouragement.  I would be lost without that.  I would be lost without God in all of this.

He loves me.  He’ll take care of me.  He’ll heal me.

And then we’ll stand in awe of all of it.

Seriously.  Are there any clever play on words that have yet to be thought of surrounding all of the hoopla of the swine flu virus?  I’m so tired of it headlining everything I watch and read.  You?  But even though I’m becoming immune to caring about anything that has to deal with the subject, I still think it is certainly something that we should be aware of.  And I’m not referring to being aware of the danger of actually acquiring the virus.  I think that topic has been mentioned a time or two over the past year.  I’m talking about the new vaccine that is becoming the subheading of every swine flu headline.  No doubt you will be, or are facing the decision of whether you or a loved one should jump in line at your local pharmacy, waiting with bated breath for the first shipment of vaccines to arrive.  I think that the bigger danger right now for all of us is acquiring the media induced flu virus.  It cannot be emphasized enough the importance of being an informed consumer when it comes to allowing a live virus to be  injected into your body with something that could cause you more harm than good.

I really, really, really encourage you to take a couple of minutes to check out this podcast.  It will provide you with great research based information that will help you make an informed decision.  Not only does it discuss the issue of swine flu, but it goes much deeper than that, giving you palpable tips on what you can do on your own to boost your immunity.  This information isn’t only swine flu specific, but has great implications for your overall health.  So if you’re interested in getting healthy, avoiding the flu, as well as numerous other ailments, then take a few minutes and check it out.

I am usually not one to feel sorry for myself. I am so thankful that I was raised to live in this mindset: It is what it is. You do what you have to do. On most days it is easy for me to rest in that. Why drown in your sorrows? It’s not going to make the situation better. In fact, it will likely make it worse. But every now and then, something will happen, and it will trigger the reality of my situation. I have a brain tumor. This thing could take my life, leaving my family without a wife, a mother, a daughter, a sister.

Yesterday was my day of being thrown back into reality. My college volleyball coach contacted me to let me know that our team is being inducted into our school’s hall of fame. After we finished our conversation, I was hit with this profound sadness. I started reminiscing a bit about those college days. The good ol’ days. The days before I had, or knew I had, this brain tumor growing inside of my head. I often refer to them as the pre-brain tumor days. Life was easy. Each day’s agenda included things like sleeping in, going to class if I felt like it, hanging out with friends, sports practice….fun stuff. The reality of our life right now really hit me. Life isn’t easy. We have a lot to deal with, more than most people our age. Doctor appointments, treatment, etc. is a part of our everyday life. It’s like we have this amazing life, yet there is this whole brain tumor thing that keeps invading it. But after wallowing in self pity for a bit, I was able to sit back and smile. I was able to smile because we are so blessed. God has given us two healthy little boys who constantly fill our lives with joy and laughter. We have a loving family that is always there to help us out when we need it, which has proven to be quite often. This tumor definitely keeps me humbled, especially when I am feeling weak physically. I deal with seizures as a result of this tumor, which is always a painful reminder of the formidable foe I am fighting. It’s also a constant reminder that I am not my own. I’m alive by God’s grace only. There are so many people who have it so much worse. A girl in our neighborhood, who was a few years younger than me, just recently passed away from the same type of tumor that I have. Five minutes ago, I received an email saying that a friend of ours just received news that his tumor has spread and there is nothing more they can do. I recently went to a brain tumor conference and it was filled with people that had bald heads from doing chemo, which exposed the all too familiar scar that outlined a prior craniotomy. A good majority of these people have a grade 4 tumor. Mine is a grade 2. The difference in prognosis is huge. These are the things that remind me how blessed I am. When I start to think about this, my thought pattern almost always follows down the same path. Why has God blessed me with a very manageable tumor? What is his purpose for my life through this? I don’t want to go through this journey without knowing that lives have been impacted. If lives weren’t touched through it, and it was just something that ‘happened to me’, then how depressing! Why can’t a broken leg just have been the thing that ‘happened to me’?
Because I’m looking for purpose through all of this, I am always on the prowl for somebody that needs my help, whether that is through encouragement, information, a hug, whatever. I love that. I love that my pride is constantly kept in check because I’m not on top of the world. I love that I am in a position where I have to look past myself and focus on others. My personality is to achieve, achieve, achieve. It’s so easy for me to grab every detail in my life and set it in order. I have plans A through Z, and then back-up plans for when A through Z don’t work out the way I had planned them to. While it can be a good characteristic, it’s often done at the expense of those around me. I am so focused on my plans, that things around me get pushed aside. “I’ll get to that after I accomplish this. Oh, they need me? Ok, just a second. I’ll be there in awhile, but I have some other things to take care of first.” If God makes time for every one of us and gives us the grace and hope that we need, then we have no excuse not to offer the same to those around us.
So yes, it was a hard day yesterday, but today was a good day. Today I was able to regain perspective. I don’t want to look at my past as the pre-brain tumor days. I want to just be thankful for the past, but look forward to my post-brain tumor days. The days that will happen after I am healed of this tumor. The days when I can look back and say “Yeah, that’s why God allowed that. That is so awesome. God is good.”

I guess it’s been awhile since I’ve been hanging out here.  Facebook makes for lazy bloggers, I think.  Most of you know that I had a scan this morning.  The scan was read extremely quickly, which is probably attributed to the fact that I had to be at the hospital at 6:30.  I knew there was a reason that I had a ridiculous appointment time.  Anyways, I am so humbled to say that the tumor has shown a subtle decrease in volume, which means the tumor is smaller than it was 8 weeks ago!!!  Amazing.  Completely amazing.  There were so many reasons that we would not have been surprised if this scan showed growth because of an increase in symptoms over the past few weeks, including quite a bit of seizure activity. We would’ve been so blessed to have a stable scan, so a tumor size reduction is absolutely thrilling!  I believe very strongly in the treatment that I have been doing, but I believe even more strongly in a God that answers prayer.  And He has.  And I am so blessed.

I won’t meet with my naturopathic doctor until next week, but I’m assuming that we’ll keep the treatment plan the same.  For those of you wondering what that is, I’ve been doing the following treatment for the past 8 weeks since my last scan:

Alternating Temodar (chemo), High dose Vitamin C and DMSO

I have been overwhelmed with the volume of messages that I have received over the past few days of encouragement, love and support. All of you who are constantly praying for us and sending us encouragement are such an integral part of us getting through this cancer journey. It is hard. So hard. But because of you, we are blessed. And I truly can’t say that I would change a thing. It’s so obvious in hindsight that every little detail has been worked out by God and has happened for a reason. And there’s something extremely gratifying and rewarding about that. We are hoping that we will soon be finding gratification in things other than those associated with a brain tumor, but we are believing that this reduction in tumor size is just the start of amazing things still to be seen on this journey.

Wow.  Summer is halfway over.  The weather has been amazing and so we’re trying to soak up as much Vitamin D, as we all know the rain is just around the corner.  The only good thing about that will be that I will actually sit down and write some more because I won’t feel guilty about sitting in front of the computer.

The days around here seem to go especially quickly because farm life is so crazy this time of year.  The thing that is lovely about this summer, as opposed to the last, is that the guys aren’t building a new milking parlor in addition to all of the other madness.  Hay is cut and baled, lagoons are being emptied and it will soon be silage time.  For all of you that don’t understand what any of that means, just know that it means 10-12 hour working days for the next couple of months.

Tyler and Trent have been busy outside.  They are so cute with their white hair and tan faces.  Marvin built them a pool, which I’m sure a lot of you saw the pictures on Facebook.  If you’re already on Facebook, you can request to see them here, if you would like.  For those that didn’t, I’ll try and get a picture posted here.  It’s not uploading right now.  Here’s the blueprint for you and all your friends:  He took 8 big bales of hay, placed them into a rectangle and then put a 200 foot tarp and draped it over them.  He then proceeded to fill up the middle of the ‘rectangle’ with water.  I have to admit I was so irritated when he first told me what he was doing.  He kept telling me that he had such a good idea for a swimming pool and that he was going to surprise us with it.  Yeah, surprise is a great descriptor for what it was.  But the guy is brilliant.  It is the perfect pool and it was extremely cost effective to boot, mainly because we already own those huge hay bales.  So it’s been a great source of entertainment for Tyler and Trent, and a great source for getting a tan during their nap time.

Remember when I was concerned that Trent wasn’t talking yet, and all of you told me to just enjoy the silence because he would be soon enough?  Soon enough has now arrived.  The boy talks as much as Tyler now.  The only difference is that only half of what he says can be understood.  Tyler has been doing a lot of activities away from Trent, so I think that it has finally given Trent a chance to get a word in edgewise and it’s starting to ‘click’.  It’s surprising how competitive the boys are even with 3 1/2 years difference in age.  I’m looking forward to school starting.  I think Tyler is going to absolutely love it.  His favorite thing, aside from being down on the dairy every second that he can, is to work in his workbooks.  I love that he’s so self-motivated and such a smart kid, but it’s really hard to keep him stimulated, and a bored Tyler is not a good Tyler.  I’ve been told that is what is referred to as “payback”.

On the medical front, I finally heard back from  Dr. Liau.  She said that she reviewed my scan and that she agreed that it looked stable.  She did suggest, however, that we keep watching it closely.  This means I’ll be getting another scan done on September 8th.  The thing that sucks about that is going through the agonizing process of anticipating the results so quickly after just going through it.  But on the flip-side, it’ll be such a short window of time, that we’ll be more confident that not much probably changed, if anything.  Her main concern is that this tumor is trying so hard to become a grade 3, but just can’t quite get there, much to our delight.  So she wants to stay ahead of it.  On a side note, for all of you brain tumor patients that read this blog, there is a brain tumor conference coming up in September in Oregon.  You can check out the details here.

I’m still doing IV therapy through the same clinic I’ve been going to in Portland for the past year, which includes DMSO and high dose Vitamin C.  When I’m not on chemo, then I’m taking one of those.  This last round of chemo was a little rough, but otherwise I’m feeling really well.  I’m at least able to keep with a 3 and 6 year old, so I guess that says something.

I know this is becoming redundant, but we can’t thank you all enough for the ways that you support us.  We would be lost in this mess without each of you by our side, so thank you so much…

An article recently came out about how researchers from a ‘green’ chemistry center have found a way to recover a chemical called polyvinyl-alcohol (PVA).  It is a compound that is used in the television industry and is a key element of television sets with liquid crystal display (LCD) technology.  These green conscious scientists are worried about the heavy burden of having to manage all of the potential waste of thrown out television sets by just burying it in landfills, so they have now devised a way to recover and reuse it by putting it into our medical system.  It would now be used for things such as “transforming it into a substance suitable for use in tissue scaffolds which help parts of the body regenerate. They can also be used in pills and dressings that are designed to deliver drugs to particular parts of the body.”  Interesting.  I decided to take a peek at the MSDS (Material Safety Data Sheet) on  PVA and here is what I found relating to human exposure to this chemical:

Skin: May cause skin irritation.
Eyes: May cause eye irritation.
Ingestion: May cause gastrointestinal (digestive) tract irritation. May affect behavior/central nervous system (symptoms may include general depressed activity, altered sleep time, muscle weakness). May also affect blood and metabolism.
Inhalation: May cause respiratory tract irritation.
Chronic Potential Health Effects: Inhalation or ingestion for prolonged period of time may affect blood and metabolism, and behavior.

It is unbelievable that scientists cannot understand why disease rates, such as cancer, are sky rocketing.  Really?  Is our society so focused on going green that we have lost our ability to look beyond the trend and use our heads to see what the repercussions of going green may be?  In many cases, such as this, going green creates risks that outweigh the benefits.  We are now recycling, which is a major component of the going green movement, a carcinogenic chemical into something that will be put into our bodies and will most definitely take a toll on our health.

The irony is this:  What’s the point of  going green to create a healthy living environment for the future, when walking down this path may ruin the health of those who will be living in it?

First, you should know that I give the glory to God for answered prayers.  I am so thankful for every single prayer that has been lifted up upon my behalf.  I’m thankful for the 156 members that signed up almost immediately for the Facebook group that was created to pray for my upcoming scans.  I’m thankful for the endless amount of emails, cards, phone calls and people that tell me that their bible study, etc. is praying for me.  More than anything in my treatment plan, I believe that prayer is the most important and the most effective.  I’m so fortunate that I was raised in a family that believes that we serve a God that can heal and answer prayer.  I take so much comfort and hope in that.

With all that said, I think that DMSO is proving it’s importance, as well.  By the time of my last scan, I had been on chemo for 3 months and it didn’t seem to be working because the tumor was still growing.  We’ll never know for sure, but with the addition of more frequent DMSO treatment since my last scan in May, my tumor is now stable and is not showing any sugar uptake on my PET scan.  What this means is that the tumor has not grown since May and it is presenting as a completely low grade tumor.  In the area of tumor growth on my scans in February and May, that area was up-taking sugar faster than the brain cells surrounding it.  This indicates active cancer cells, which was confirmed by the tumor growth.  We are now in a similar situation to last summer after going to Oklahoma.  The tumor was presenting as a high grade tumor before starting the natural treatment and then was low grade after doing a couple rounds of the treatment.  I was doing fairly high doses of DMSO at that time, as well.  This is amazing news!  If there was growth on this scan, I would’ve had to make the agonizing decision of whether or not to do radiation.  I can’t put into words the relief of not having to do this.

At this point we’re going to just keep on doing what we’ve been doing.  The fact that the DMSO seems to be doing the trick is a bit bitter-sweet.  It’s a bummer having to deal with the odor, but I guess it’s better to be around and smell a bit, than to not be around at all, eh?

We’re still waiting to hear from UCLA and will probably make a decision of the next scan date based on their recommendation, but for now we’re just going to bask in my scan results.  Thank you, again, for all the ways you are showing us your love and for your prayers.  We are blessed.

I thought I should post a blog since it’s been a very long time.  It’s been challenging to have time and actually want to sit down at the computer lately.  I love summer!  I was supposed to have scans this morning, but they had to get changed to next Tuesday due to a scheduling conflict.  This is closer to 8 weeks from the last, anyways.  Life has been quite busy lately.  Between my endless medical appointments and summertime with the kids, there is always something going on.  It’s so nice to have Tyler home to play with Trent in the mornings.  They are becoming quite close now, so it’s fun to watch them grow together.  Whenever they’ve been apart and see each other again, they always give each other a big hug and pat each other on the back.  SO cute.  Think that will last for the next 10 years?  Neither do I.

We were able to get about 1000 miles away from cows and doctors for 8 days in California a couple weeks ago.  We spent a little bit of time in northern California with Johnny and Melinda (Marvin’s sister) at their house and then headed down to San Diego with them for a week.  We hit up Sea World, the beach, stayed at an RV resort that was right on the bay and just hung out.  It was amazing.  The weather was perfect, the company was perfect, it couldn’t have been a better week.  It was a much needed break for our family.  Marvin has been going 24/7 with the dairy for the past year and if he’s not working, he’s dealing with some kind of medical something in my life.  I actually went a couple of days on this vacation without once thinking about this tumor.  I am not at all exaggerating when I say that it has been a couple of years since that has happened, probably before my tumor recurrence.  So that was amazing to be able to be so distracted by having fun that we didn’t think about all of the other ’stuff’ going on in our lives.

We’ve had some tough times in our house lately.  Because Tyler is getting older and aware of a lot more now than he was when he was younger, he’s now asking why I have to go to the hospital and doctors so often.  He starts crying if I have any focal seizures come on and he’s with me because he’s scared.  He’s seen a couple of my grand mal seizures which doesn’t help that situation.  He tells me all the time that he’s worried about me.  It’s heartbreaking to watch him deal with all of this.  We are praying, pleading that these next scans show some good news.  We could sure use some!

Trent is finally putting forth more effort to talk.  It’s about time!  It’s really cute.  We’re hoping he learns to speak well soon, but just not as much as his brother does(-;

I’m still doing chemo which is going ok, as well as natural IV therapies.  We’re hoping to create some sort of synergy with the 2 different treatments to get a response from this tumor.  If the scan shows some growth, it will be a very hard decision of how to proceed.  Radiation is recommended by all doctors, but since we’ve been told that it won’t help me live longer anyways, and it could cause some pretty significant side effects including causing a high grade tumor of what I already have, then it seems illogical to go down this road.   So we’ll just take it a day at a time.  The story of our lives…

We still feel blessed, though.  We have so many loving and supportive people around us.  We know we are covered in prayer and serving a God that can heal.  We are claiming healing in my life, hopefully sooner rather than later.  We know God is good so we’re just resting in that.  I will post with results when we get them.  Scans are July 7th (how is it July already???), so hopefully by the end of next week we’ll get some news.  Until then…

After consulting with my plethora of doctors, here is the plan we came up with.  Dr. Liau is concerned that the chemo may not be working for my tumor, as it’s grown slightly since I started chemo in February, albeit slight.  She first recommended that I proceed with radiation, but after a phone conference with her she agreed with my appeal to give chemo a couple more months to kick in, scan again and then go from there.  I’m still hesitant to play the radiation card for a couple of reasons.  First, it’s still only a low grade tumor.  I can only do radiation once, so if it happens to upgrade down the road, I don’t have this option.  Radiation is generally not used for low grade tumors because of this reason.  Second, she said that radiation will not shrink this tumor, it should just keep it from transforming to a higher grade tumor and hopefully keep it from growing more.  My thought was that I’ve had this thing for 5 years now and it’s mostly remained low grade so that wasn’t too concerning for me, even though it’s always a risk.  If radiation would actually shrink this thing and get it out of my brain, then I might be more willing to jump on that bandwagon.  I asked her what the deficits would be radiating the area that needs to be radiated.  She said that I will possibly have more visual deficits than what I already have, as well as memory issues and hair loss at the insertion site.  Not too bad, but still not my choice at this time.  I’m so thankful that she’s open to just giving me her advice, but still willing to let me make the decision and supporting me in what I decide.  I can’t imagine going through this whole mess without her!

On the alternative front, we’re going to keep on keeping on.  We’ve been keeping DMSO out of the mix for the most part since last November, so we’ve thrown that back in at quite a high level.  It stinks, literally, but it seems to have been effective during last summer and fall, so we’re going to see what we can do with it back in the schedule.  I am alternating the DMSO and high dose Vitamin C on the days that I’m not on chemo to throw something at this tumor every single day.  Since I’ve been told by my surgeon that there is nothing out there right now that can shrink this tumor, I’m going to try anything I can to make that happen.  For those of you wondering, she is aware of what I’m doing and supportive, as is my oncologist.  I’ve been blessed with several doctors in my life that will let me make a lot of my own treatment decisions with their guidance, but support me in whatever I decide.  LOVE that.

Thanks for all of your emails, phone calls, cards etc….it’s great to feel loved and supported.  Next scan is June 30th….you’ll be seeing me before then (-;