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…

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!

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!

We received the finalized MRI results and the tumor has shown some mild growth.  Devestated?  No.  Disappointed?  Yes.  We haven’t been nearly as aggressive in the DMSO therapy since my last scan and in fact hardly did it in late November and December because of the holidays.  It probably wasn’t the best decision, but it’s hard to want to smell like DMSO when you know you’re going to be around a lot of people celebrating the season.  Who knows if that contributed to the tumor not remaining stable, but it is what it is, and we’re onto the next step!

 It is still presenting as a low grade tumor, which is some of the best news we could’ve received.  This tumor, as you’ve seen, is supposed to be a higher grade (3), rather than 2.  We have been so blessed that it has remained this way since beginning this treatment in June.

What’s the next step?  We have decided to start chemo on Monday.  The chemo is an oral pill and I will do it 5 days in a row, followed by 23 days off.  I will continue to do some natural therapies that will compliment the chemo, but also help off-set the side effects.  The most common side effects with this medication is headache, nausea, fatigue and constipation.  The latter, I’ve noticed, is the biggest complaint from people online.

We thoroughly remain confident that we can beat this tumor.  We believe that God will bring healing, but he apparently isn’t finished with this chapter in our lives, yet.

I’m waiting to hear from my neurosurgeon, Dr. Linda Liau.  UCLA hasn’t always concurred with my local radiologist on the reading of the scans, so I never consider the results truly official until I hear from her.  I’m hoping to hear from her sometime next week. 

We are doing well, otherwise.  We’ve had 2 very sick kids in the house, getting anything and everything that seems to be going around the school and the church nursery.  a.k.a. Ground Zero.  Just when we thought we were turning the corner with these colds, Tyler now has an ear infection.  Poor guys.  I’m happy to say that I haven’t gotten anything, yet, (aside from this tumor), so my immune system must be working well! 

Thank you so much for all of your love, prayers, emails, notes of support over the last few weeks.  I’ve said it before and Ill say it again.  It takes a village to get through a cancer diagnosis and all of the things that come with it.  I would never survive the agony without God’s grace and all of you investing in our lives in the ways that you have. 

I will post, again, when I hear more information.  I have not received the PET scan results, but based upon the MRI, I would think that the PET should correlate with the MRI results.  Until then…

I got an email from my doctor at UCLA today…..finally, and they think that the tumor is stable from the MRI in April. Yippee!!! They didn’t say that the tumor had grown at all, so we couldn’t be happier with that news. Dr. Liau told me that the board recommends continuing on the chemotherapy regimen that I’m on (I didn’t tell her what kind of chemo I’m doing), and to get a follow up scan in 3 months. If you’re wondering what treatment I’m doing right now, here is the schedule:

6 days of Sodium Bi-Carbonate, then alternating DMSO/Garlic and DMSO/High dose Vitamin C the next 6 days. I will be doing 4 total cycles of this treatment schedule, so 48 total days of treatment. This puts me out until mid October, so my naturopath will order a PET scan at that time to see what kind of progress we have made. I’m so much more hopeful with this round of treatment that we can get rid of this thing, then I was about the last round. The garlic throws a whole new dimension (and smell) in my treatment, because of the research that came out last year from NIH showing that garlic kills brain cancer cells instantly upon contact. I am also doing Rife and Acupuncture treatment with him once/week.

Have I told you how blessed we are? Your prayers and our prayers are being answered right before our eyes. God has blessed us with confirmation that this is the path on which we should be heading. All my doctors wanted me to do radiation back in May ASAP. Treatment that they told me would make me unable to do math any longer, because of the damage that it would do to my brain. I am so humbled by God’s grace and healing. And so humbled by all of you that lift us up in your prayers. Thank you so much!

Our second bit of good news is that we have football tickets in hand, and we get to watch the Beavers hopefully beat USC in only 2 weeks, 6 days. That would probably take an insane amount of prayer, though….although they pulled off the upset in 2006. Ahhh…..football.

    Wow, we packed in a lot today.  Our day began with an MRI, which was much shorter than I anticipated, much to my delight.  Last time I had an MRI done here, it seemed like at least 45 minutes, but this one was only 20 minutes.  Yay!  After that, we killed some time walking around the UCLA area, until my appointment with Dr. Liau.  I think I could spend a week around this area and never run out of things to do.  Our appointments with her are always a breath of fresh air.  She is such an amazing person.  She is so compassionate and genuine, and I’m truly amazed that this person who’s been featured in numerous shows like Dateline NBC,  will engage in email conversations with me, whenever I have a question or concern.  In December, when I first found out that my tumor was for sure growing, she was still emailing with me at midnight that night.  Simply amazing.  These are the things that we learned from Dr. Liau today:

~ My tumor is not visible on MRI, yet, as an actual white mass.  Some of you may be wondering then, why in the world I’m letting this woman cut open my head for something she can’t totally see??  Here is why.  There has always been some swelling along the cavity of where she resected the last tumor.  This area of swelling started to look a little “plumper” on my October scan.  She caught the change, but my local radiologist didn’t.  So we waited until the December scan to see if that area changed, again, and it did, looking slightly more plump.  So she said that it is creeping very slowly, but with these tumors, it is always best to stay ahead of the game and get it out, if something happens to be in there.  Astrocytomas love to morph or recur as high grade, and become very difficult to control, at that point.  So surgery it is!  She also thinks that taking out that swelling will help alleviate these pesky seizures that I have from time to time.

~We learned that the area that she wants to take out, that was possibly inoperable, is bumping up against the membrane/blood vessels that surrounds the brainstem, but that she thinks she should be able to successfully remove it.  Yay!!  This is never a given until she is actually in there to see what’s going on with her own eyes, but that was very encouraging.

~The surgery will probably last around 8 hours.  We were hoping that it would be significantly shorter than the last surgery, which was 10 hours, but it sounds like another marathon.  Boo for my family sitting in the waiting room!

After that appointment,  I had to meet with the anesthesiologist, get some blood drawn and pay the cashier in Patient Financial Services.  The MRI and appointment with Liau took about an hour and a half.  The other appointments took 3.5 hours!!  I would say 3 hours of that was just spent waiting. (sigh)  SO glad all of that’s over.

This morning, Marvin ran to Starbucks to get a coffee before one of my appointments and noticed that they were setting a whole bunch of stuff up at the Fox theatre next to Starbucks.  He asked what they were doing, and the guy told him that they were setting up for the premiere of Will Farrell’s new movie Semi-Pro, and that the whole cast would be showing up tonight.  Sweet.  We’re there!  So, after dealing with some pesky motorhome issues, we headed over to try and get as close as we could to the runway that they had setup.  When they do these premieres, they give away of ton of tickets to the actual movie premiere showing that night, through contests, connections, etc, so there are people swarming everywhere.  We mingled our way pretty close to the fence that surrounded the carpet they had setup, so we had a great view of all the actors/actresses who were there.  The longer we stood there, the more drawn into all the excitement we became, to the point where I was a little bummed out that we couldn’t go inside and see the movie.  I noticed a guy running around, that appeared to be heading up the whole event, so I thought I might track him down and chat with him for a second.  When I stopped him, I asked him if there were any premiere tickets left…..and I’m not totally sure, but I perhaps mentioned that I was there with my husband for brain surgery this week, and would love to go to the premiere (wink, wink).  He asked where we were standing and then told me that he would see what he could do.  About 20 minutes later, a lady came over and tapped me on the shoulder with 2 tickets in hand.  So we got to go to the premiere!!!!  The timing worked out so well that we actually followed Will Ferrell down the carpet runway, into the theatre.  After the movie, we headed into the lobby and were able to get some great pictures of Woody Harrelson, Marvin talking to Andy Richter and Marvin slapping a high 5 with Will Ferrell. There were some other celebrities, too, but I didn’t know most of them.  If I was a faithful “The Office” watcher, like 99% of all of our friends are, I could tell you the name of the cast member that was standing next to me while I was waiting for Marvin, but I have no idea.  So, anyways, that was quite the unexpected surprise ending to our day!

Wow, thanks for sticking with me through all of that rambling!  So at this point, it looks like we will be heading to brain surgery, rather than Disneyland on Thursday.  God is amazing, though.  The tumor still looks to be low grade and it looks to be completely operable.  I am so blessed, and I get emotional thinking about how good God has been to us throughout all of this.  His mercies have been new every morning and his grace has been beyond sufficient.  We’re so humbled by his blessings through each step of the way, and we know that so much of it is due to our family and friends backing us up in continual prayer.  Thank you so much, from the very depths of our hearts!  Our boys are doing amazing being away from us, which is a huge answer to prayer, as well!  I promise I won’t yap your ear off tomorrow.   The next time you’ll be hearing from me, I’ll probably be sporting a stylish new gauze turban.  Until then….