The results of my MRI showed the tumor to be stable since my last scan, which was almost 3 months ago.  How blessed am I?  This time spent off of treatment was great not only for a break, but so much better for my relationship with God.  I loved it.  I loved that when the fear crept into my head about being off of treatment and the implications it would have for the outcome of this scan, I remembered that I handed it all over to Him, and then I could breathe a sigh of relief.  It was up to him.  He wanted me to do this, so I had to trust him to take care of it.  And he did!

I challenge any of you going through an extremely difficult situation to put yourself (responsibly) in a position where you have to rely upon Him and his help and guidance.  The bondage of the crisis melts away and you often become more free than before the crisis began.  God is so faithful.  Why do we so often doubt?

I posted a testimonial for my naturopath on his new website.  Part of that testimonial said this:  In my world of cancer, he has by far become my most important ally. I have six doctors that I deal with regularly. Five of these doctors mean really well when it comes to treating my cancer. Dr. Nigh is the only one who has taught me that my body must first become well, in order to treat this cancer successfully.

I look at my cancer journey in a similar way spiritually.  I feel like God is teaching me that my relationship with him must become well, too, as part of this healing process.  Not that God can’t and wouldn’t heal me anyways, but for me, these past few weeks of having to lean completely on him was a breakthrough in my relationship with him.  My whole hope and trust was put in him, and the rewards of that have been amazing.  I don’t live everyday in fear of the unknown.  It’s in his hands and I feel like I’m doing my part in putting my body on the path to wellness and I think that he will bless that.  I truly believe that our body was meant to be self healing and that if we treat it correctly and give it the proper nutrition, that it will remain well.

My naturopath and I decided yesterday that the plan will be to do one day of treatment every week.  One day on, six days off.  Love it.  It’s a great treatment plan.  These tumors like to explode and upgrade overnight, so the treatment that I’m doing should keep that in check, but not overwhelm and alter my daily living.

God is good.  The people he has surrounded me with are incredible.  It is an absolute treasure and gift to be taken care of as well as I am.

If you’re dealing with something that is overwhelming, give it to him.  He wants to take it and let you rest in his palm.  Do it and you will be blessed.

I can tell you a little bit about that…

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.

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…

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 (-;

I received an email from Dr. Liau at UCLA and she has recommended that I proceed with radiation at this point.  The tumor has grown only slightly since February, but since the chemotherapy hasn’t controlled the growth, she’s concerned about more growth.  This news is a little devastating.  It’s not a card that we wanted to play right now.  It can only be done once and it is usually quite damaging, considering that your cognitive functioning is being radiated.  I have a phone conference setup on Wednesday with her so that we can discuss things further.  I have many questions before making this decision.  I’ll probably make a decision by Wednesday, so I’ll post then what that is.  Please pray for comfort and wisdom right now.  So appreciative for all of you…

The local radiology report says that the tumor has mild growth. It’s still presenting as a low grade tumor (yay!), but it still appears to be on the move. Bummer. We’re doing really well. After a bit of processing, we’re back in the frame of mind where it is what it is, and we’re on to the next step. What is the next step? Not sure yet. We’re waiting to hear back from Dr. Linda Liau at UCLA, whom we deem the final opinion. Once we get word about their read of the scan and recommendations, then we’ll decide what to do. Hopefully that will be rather soon. I’ll post when we know more. Thanks for your prayers!