Stable!

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…

Health updates

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…

Scan time, again…

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.

MRI scan results

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.

You might be a redneck if….you build your pool out of hay bales and tarps

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…

Quick Update

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…

Scan Results

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!

Scans are tomorrow morning

I will post with the results as soon as I hear.  Hopefully this week sometime.  Thank you so much for all of your hugs, cards, prayers.  We are blessed.

MY FACE IS SHINING UPON YOU, beaming
out Peace that transcends understanding. You are surrounded
by a sea of problems, but you are face to Face with Me,
your Peace. As long as you focus on Me, you are safe. If you
gaze too long at the myriad problems around you, you will
sink under the weight of your burdens. When you start to
sink, simply call out “Help me, Jesus!” and I will lift you up.
The closer you live to Me, the safer you are. Circumstances
around you are undulating, and there are treacherous-looking
waves in the distance. Fix your eyes on Me, the One
who never changes. By the time those waves reach you, they
will have shrunk to proportions of My design. I am always
beside you, helping you face today’s waves. The future is a
phantom, seeking to spook you. Laugh at the future! Stay
close to Me.

A much needed breath of fresh air

I have been blessed, again, with a great doctor.  I decided to get a new oncologist, so my neurologist recommended one at her clinic in Corvallis.  She is amazing.  I told her everything that I have been doing and she was so supportive that she offered to put in an order for me to get a port.  She thought my PICC line must be a huge inconvenience for me, which is quite true, so why not get a port, instead?  A port is a catheter that is surgically placed under the skin, usually around the clavical area.  There is essentially no maintenance and it can get wet, which is lovely.  Trying to keep this PICC line dry in the shower has proven to be quite challenging.  Swimming is definitely not an option, which is a big bummer when going on vacation.  I’ve wanted to get one of these for awhile now, but didn’t have a doctor that would be willing to give the order to have it done.  It is such a relief to have a doctor that supports what I’m doing homeopathically, and it’s amazing that it happens to be the same one that is also monitoring my cancer treatment.

I have scheduled my follow up MRI and PET scan on May 5th.  Based upon the results of those scans, we’ll decide what the next step will be.  If the tumor is still growing, it is recommended by all of my doctors that radiation should be done.  This would be the absolute worst case scenario.  We’ve always wanted this to only be a last resort, rather than play that card so early.  It’s a one time deal and can’t be done, again, later.  But if it’s necessary to get it done, then we’ll do it.  I really don’t anticipate any growth on this scan.  My focal seizures have decreased quite significantly over the past month, which is such a huge relief.  I have done 3 rounds of chemo so far and will be doing a fourth right before my scans.  The first round of chemo was a learning curve.  I learned that the fatigue I experience is significantly reduced if I eat some protein first thing in the morning, followed by small meals throughout the day.  It seems like this drug plays with my blood sugar level, so keeping it balanced helps tremendously.  Part of this issue, I’m sure, is because I have to stop eating early the night before.  I have to take Zofran (anti-nausea med) on an empty stomach and an hour before I take the Temodar.  It really seems to wreak havoc on my GI system, too.  About an hour after I take the Temodar, I experience some fairly significant cramping.  ‘Smooth Move’ tea is a fabulous solution for this.  As soon as I start drinking it, the cramping subsides.  So if you’re on Temodar, buy a case of this stuff here.  It’s significantly cheaper than buying some in a store.   I am so extremely thankful for modern medicine when chemo is necessary.  It’s amazing that I can be on chemo and forget that I’m on it, thanks to things like anti-nausea drugs.

I’m hoping to get my scan results a little faster than I have been getting them.  It’s been taking about a week to get the results, versus a couple of days like what it used to be.  The waiting game is always a stressful time.  It’s hard enough dealing with the anticipation of having the scans done, let alone having to wait to get the results several days later.  I feel so incredibly blessed to be surrounded by caring hands right now.  My surgeon, my naturopath, the MRI tech, the nurses changing my PICC line dressing, my oncologist….all amazing people.  Experiencing cancer is so much easier when you enjoy the people who surround you throughout your journey.  I ame blessed in that way. 

Other than all of that stuff, I’m hoping to have some good news to post on May 6th…

UCLA Responds

We finally heard back from Dr. Liau last night.  She said that the brain tumor board (that always seems weird to say) reviewed my scan yesterday, and although they agree there has been some growth of the tumor, it’s nothing major.  They agree with our decision to proceed with chemotherapy and get another scan in a couple of months.  If the scan is stable at that time, then they recommend just staying on Temodar.  If it is growing, then they recommend radiation.  This is GREAT news!!  All we were looking for was confirmation of our decision to do chemo.  They recommended doing radiation ASAP last May, rather than chemo.  So thank you to all of you who prayed about yesterday for us.  They were answered.  We are blessed.

I have to say that if you or anybody you know needs a neurosurgeon, I can’t recommend Dr. Linda Liau enough.  She is one of the most amazing people I have ever come across.  No doctor that I know of will let you email them directly, nor will they respond promptly or at all, if you do.  All of my doctors are amazed that she will converse with me in this manner.  She sent this email at midnight last night.  She is so full of compassion for her patients, and is one of the most knowledgeable in the field of brain tumors.  After my last surgery, she came and sat down with me on my bed in the hospital to let me know her thoughts on everything and to see if I had any questions or concerns.  I have a whole plethora of doctors in my life, but not one of them would ever display this much concern and compassion.  She so genuinely concerned and such a comfort for me as I walk this journey.  I’m so blessed, and feel like I couldn’t be in better hands. 

So at this point, I will continue on chemotherapy, along with adjunctive therapy to keep my immune system boosted and give us multiple angles of attack on this pesky thing.  I will get a follow-up scan somewhere around the first of May, and we’ll just go from there. 

That’s our story and we’re stickin’ to it!

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