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!

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…

OK.  The preliminary results of the MRI is that the tumor is stable.  Yep…still there, but it’s not growing.  We were a bit disappointed, but it’s not growing!!!  And it’s still radiologically presenting as a low grade tumor, rather than a high grade, which is what it’s supposed to be.  So, I’m feeling blessed. 
I was bummed on Friday about this news, but my neighbor took me with him to the OSU/Cal game on Saturday, so it was quickly forgotten.  I’m having some major grin hang-time from that game.  The Beavs are SO fun this year.

I do have to say as a sidenote, though, that the BCS is the most screwed up system EVER.  I know this isn’t a newsflash for most of you, but honestly.  It’s ridiculous.  It’s either that, or Phil Knight has paid off so many people to get a team that hasn’t yet deserved to be in the polls, into the polls several times this season (and the past 5).  C’mon.

Thank you so much for all of your prayers, emails, phone calls, cards, etc…We are so blessed by all of you!  I’ll post more when we come up with a plan.  We’re still waiting on PET scan results and UCLA’s opinion on my MRI, so I’ll post those, as well.  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.

Dr Liau just came out to tell us the surgery is over and they are now wrapping her head with the fashionable gauze turban, she referred to.  She was stable throughout the procedure and did very well.  We thank all who prayed today.  We will be able to see her about 7:00 PM PST.

The results of the surgery remain inconclusive.  What we know is that the “swelling” was tumor. It was a new tumor that was growing under the normal brain tissue in an area that was before empty, from the previous surgeries.  It was approximately 3cm, or just over 1 inch.  She was able to remove most of it, but not all. There remains some that is too close to the brain stem to be able to get.  What will need to happen next will be dependent on the results of the labs.  We won’t know that until next Wednesday.

It’s not what we wanted to hear, but we know that God’s hand is in getting us here now and discovering this sooner than later.  He will not leave us as we walk these next days and weeks to come.

    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….