Wow, a lot has transpired since my last blog. There is never a dull moment in our family, unfortunately. We found out last week that my dad has cancer, now, too. He has prostate cancer. He will most likely be having surgery when we get back from Maui. It hits me every now and then just how weird it is that my dad and I have cancer at the same time. It seems especially weird because we are both so young. Yes, he’s quite a bit older than me, but still very young. My parents are both doing really well. My dad has really changed his eatings habits, too, and is actually going to buy a juicer so he can experience firsthand how amazing garlic juice really is. He’ll be hooked in no time (wink, wink).

I found out today that UCLA thinks my latest scan was stable. Yay! It’s always a little nerve-wracking waiting to see what they say, as they’ve been catching things that other doctors haven’t. They re-reviewed my pathology and said that they now think that my tumor is actually a grade 3, not a borderline grade 2/3. Bummer. So because of that, they want me to start radiation ASAP. They said I can do Temodar (chemo) first, if I would rather, at OHSU’s recommendation, but they recommend radiation followed by chemo. I asked if they would recommend chemo and radiation concurrently, as it has been shown that Temodar makes cancer cells more radio-sensitive when taking it at the same time. No, they don’t recommend it for me because they’re not convinced it has worked well for grade 3 tumors, only for grade 4. So they recommend radiation and OHSU recommends chemotherapy. So I thought I would complicate matters more, by calling Duke University today. They are the best brain tumor hospital in the world, so I thought they would be a great third opinion. I called to try and get some information and a doctor called me back within 2 hours. Amazing. She went over all of my history with me and then gave me their recommendation. And guess what? They recommend doing chemo and radiation concurrently. Nice. Of course they do. SO, all this to say that we really, REALLY need some wisdom in decision making over the next month. I won’t be starting any treatment until we return from Maui, so it will be about a month from now, but I’m sure it will be here before we know it. Needless to say, our family covets your prayers immensely right now. We are going through a lot, but know that it’s all in God’s plan. There is a reason for it, so we’re trusting in His love moment by moment.
Oh, I almost forgot. To add even more drama to the “days of our lives”, I had a seizure on Sunday. Remember how excited I was a couple of weeks ago because I was finally legal to drive, again, after my seizure last October? Yup, that’s right. Now I’m not legally allowed to drive, again, until next October. I’m sooo thankful that we’re coming into summer, so at least the kids and I can go outside, if I can’t get out of the house by driving somewhere (insert a very big sigh).

Let me just start this out by saying thank you to each and every one of you that has been praying upon our behalf! God has been so good to us, and we have been so blessed throughout this entire experience, dealing with this brain tumor. Your love and prayers are absolutely amazing, and I am constantly humbled when I hear things like “My friend’s sister’s mother’s brother’s bible study has been praying for you”. How amazing is that? All of these people that I don’t know, and they don’t know me, yet we are bonded together because of our love and faith in Christ Jesus. We know that he is the one to turn to in our times of need. So thank you so much for that. It is my prayer that God blesses each and every one of you.

Yesterday was a great day and a hard day. We have been so blessed to have a great doctor in my neurosurgeon, Dr. Liau, that it’s hard to find other doctors that measure up to her. She’s really a dream doctor. We have been blessed, again, with Dr. Neuwelt. He was amazing. I asked his nurse, before he came in, what he was like. She said that he is very nice, but tends to be in a hurry in his appointments. He is a surgeon, oncologist, heads up the Blood Brain Barrier research program at OHSU, etc….very busy man. So we were anticipating him just coming in with the facts, take them or leave them, and he’s out of there. Quite the opposite. He spent so much time with us, and was so genuinely compassionate. He was concerned about UCLA’s recommendation to do radiation for 2 reasons. One was because you can only do it once, so it’s better to save that option when it has progressed to a very aggressive high grade tumor. Two was because he thinks that the area that needs to be radiated will cause significant neurological deficits. He was telling us that he has a patient that is a few years younger than me, that did do the radiation, and she has a hard time doing math now. Wow. So his recommendation, much to our agreement, is to do Temodar, which is a chemo pill. To her credit, Dr. Liau sent me to him to get this second opinion, because she wasn’t so sure radiation was the way to go right now, either. That was just what the UCLA brain tumor board decided collectively.

So, the plan now is to start Temodar at the end of May. He wasn’t concerned about getting on it immediately because my tumor that is still there looks low grade on the MRI. Now we can go to Maui and not have to worry about any ill effects of being on chemo while we’re there. Praise God!! Temodar is very different from traditional chemo. It’s just an oral pill that you take 5 days out of every month. Side effects are usually just nausea and some mild fatigue, which they give you other drugs to offset those. I have quite the pharmacy going on in my house. So that is a huge blessing, especially when taking care of 2 little boys everyday. The nurse that was explaining things about Temodar said that typically patients that have low grade tumors go on it to “buy some more time”. Nice. Did you really have to say that? It’s very contraversial how to treat low grade gliomas, obviously. They are not usually that responsive to chemo and radiation because they aren’t an abnormal enough cell. When they become a higher grade, they are very abnormal and become fragile, subjecting them more to these treatments. It’s kind of a rock and a hard spot, but we’ll take the low grade anyday.

As we were leaving, I was so conflicted in my emotions. So thankful that my tumor is stable, but we also feel like we are back to square one, where we were 4 years ago. I again have a tumor in my head that is inoperable and capable of upgrading at anytime. It was hard not to just cry about that. We came so far in the past 4 years, and God has brought us full circle. We know there’s a reason, and we know that He will carry us through it. He’s carried us through that past 4 years, he’s more than capable of doing it, again. Since we found out about this tumor last October, I just know in my heart that God is going to use it in my life to help other people. I don’t know what that looks like, exactly, but I know He’s going to use me.

I was doing my devotions today, and came across a verse in Psalm 7:17. “I will give thanks to the Lord because of his righteousness and will sing praise to the name of the Lord Most High”. I read the study notes for this verse and it said that this is meant as a vow to praise. It said that many prayers in the Psalter include such vows in anticipation of the expected answer of prayer. I love the faith exhibited in that vow. It’s a vow anticipating…anticipating…anticipating. Not just kind of hoping God will maybe possibly answer their prayer. No, they’re ANTICIPATING that God will meet their need, and praising Him in all things, meanwhile. Oh how I want that kind of faith all the time! God promises us that with the faith of only a mustard seed, we can move mountains. I am just in awe of the power that we have in Him. With just that much faith, that’s what he can do for us! Why don’t we utilize that power all the time?

All of this touched me so much, because I know that God can move this tumor, as well, right out of my brain, and I want all the faith in the world that He will do it. I know that God is good and His timing is perfect. It’s so hard, as humans, to trust His timing. But because we are human, we can’t see the big picture, so His timing is better, as most of us usually see in hindsight. But for now, no matter the storms that come my way, no matter the trials I may face, He promises that He will see me through, so I will trust in Him, anticipating that my prayer for freedom from this disease will be answered!

My tumor is stable. I’m very tired, so I’ll post more about it later…

I am officially legal to drive, again. Woohoo!! I had my appointment with my neurologist on Wednesday and she said I could drive, as long as it wasn’t in front of her house. She said that my EEG from a couple of weeks ago looked good. My brain isn’t “twitchy”, which means it’s not getting epileptical spikes, which would indicate seizure activity. That is very good news for me. A little more comforting when I’m out running around, that I don’t have a twitchy brain. So, I went to town with kids in tow for the first time yesterday, in months. Actually, I just had Trent. It was actually really fun. I felt like such a grown up. It’s hard to explain the feeling I get when I can start driving again to people who have never had that privilege taken away, but just know it’s pure joy! The other thing that my neurologist said, is that she did her residency at OHSU and worked with Dr. Neuwelt, the new neuro-oncologist that I’ll be seeing this week. She said that he is great, and that she loves him. That is SO comforting to me, that he has a great bedside manner. You never know with doctors that have a lot of medical “power”. He is the head of the blood brain barrier program at OHSU. And a lot of these brain doctors seem to let the phrase “It’s not like it’s brain surgery” go to their head….if you know what I mean.

I also had my first appointment with an acupuncturist this week. I have a lot of pain down the right side of my body, stemming from the temporalis muscle that has to get stretched and pulled away for each brain surgery that I have. I’ve heard wonderful things about acupuncture and pain, so I thought I would give it a shot. It’s a little Chinese lady and she was full of information. She told me that I should definitely NOT be feeding my body 2 cloves of garlic everyday, as I do in my juicing. Marvin wasn’t too crazy about me going to an acupuncturist, but I think that alone was worth the money, for him. She said that that much garlic can inflame my digestive track and trigger inflammation in the rest of my body. Interesting. So for now, I’ve removed the garlic from my juice, and will just stick to cooking with it, instead. She also gave me an herbal “formula”, as she’s an herbalist, too. It’s supposed to detox my body and give me more energy. I had quite a bit before, and have been detoxing for awhile, but I figure it definitely can’t hurt. I’ll keep you posted about how the pain management goes, in case you may be wanting to try it out. I will see her weekly for awhile.

The other thing that I have decided to do is to hire a nutritionist. There is a lady who’s name I’ve come across several times over the past few years. She is a nutritionist in Utah, that has a PhD and specializes in brain tumors. I think that I’ve fine-tuned my diet pretty well, but there is only so much that I can do on my own. She will monitor my bloodwork, looking for different things that I’m lacking or have too much of. These are things such as copper, vitamin levels, heavy metals, etc…I sent her all of my pathology and MRI reports, as well as other medical history. She will send me a tailored report, once she has my bloodwork, of what kind of a diet/supplemental/exercise program I should be on. She is almost always a keynote speaker at brain tumor conferences. She just attended the conference at UCLA, for the latest treatments for brain tumors. That is so comforting that she is educated on all of the latest treatments for brain tumors. I think she will be a great source of information for me!!

This coming week is a big week for us. I have an MRI on Thursday, which I will take the CD with the scan on it to my appointment with Dr. Neuwelt on Friday. He will review it while we are there, and then we’ll talk about the next step. I’m working very hard on laying this one down at my father’s feet on a daily basis. It’s so easy to let satan creep into my thoughts. Your prayers will be especially coveted this week for peace, comfort and a great scan. A clean scan would be a miracle, which we are praying for! A stable scan would be amazing, as well. If the tumor has grown at all, I will probably have to start treatment now, rather than wait until after we get back from Maui, but we are standing with confidence that it will be good news!

Other than that, it’s life as usual. Tyler is sooo ready for Kindergarten. He is bored and just doesn’t understand why there are so many rainy days on the internet (weather forecast) all the time. He also can’t wait for Trent to not be a baby anymore, because babies are just so breakable. He means that Trent knocks over the things that he’s building all the time. So…cute. Trent is growing so fast. We think he’ll be bigger than Tyler. I’m trying to tell Tyler to be nice to him all the time, because one day the tables may turn. Trent will be getting his first haircut tonight. I’ve finally decided that since his hair is so long that it’s wrapping up around his ears, that it’s time. It’s just so incredibly cute! He has these perfect white haired ringlets. It will be sad to see them go, but the waitress at Applebees the other night asked if “she” needed a high chair…

We are so blessed by all of you who are praying for us, sending us cards, emails, messages….it’s so humbling. We’ll keep you posted on our news this week.