This is another one of those situations where I just have to laugh, so I don’t want to pull my hair out. I’m already missing half of my hair with the exception of 2 inches of new growth, from my surgery in February. SO, with that I will choose laughter. Not only do I finally have an appointment for a scan, but I’ve been scheduled 4 times for scan appointments.

Here’s the story. Since my PET scan was cancelled on Friday, I called that same day to schedule an MRI because I knew that I could get one of those sooner than August 8th, which was my new PET scan date. Getting an MRI, as well as a PET scan is a good idea, anyways, because the last scan that I had here at home in April was an MRI, so they’ll have a comparison. So I put a call into my doctor on Friday requesting that he fax over an order to the hospital for an MRI. I called the hospital myself that day and scheduled my MRI for this coming Friday. So this morning I get a phone call from the PET scan clinic telling me that they went ahead and re-scheduled my cancelled appointment, for the exact same time that I scheduled my MRI, of course. SO, I then called the hospital to move my MRI to Monday. When I got home from running errands today, I had 2 phone calls from 2 separate nurses at my doctor’s office saying that they both scheduled an MRI appointment for me and to please call them back so that they could give me details. Wow, what an orginizational structure. Not only at my doctor’s office, but for the hospital scheduling staff that would allow 3 appointments to be made for the same patient to get a brain MRI scan within 24 hours of each other. Comical, eh? Yeah, I really don’t think so, either.

So, here’s the final schedule. I will be having a PET scan on Friday and an MRI on Monday.

For those of you who are wondering what the difference is betweent the 2 scans, here it is. The MRI is better at showing solid masses, as well as blood supply. They inject contrast into my veins half way through my MRI scan. This contrast then lights up any blood vessels in my brain, so if they see some blood vessels lighting up going into and around my tumor, it means that my tumor is “enhancing”. This is usually, but not always, an indication of a high grade tumor. The tumor has progressed enough to create it’s own network of blood vessels. A PET scan, on the other hand, shows the metabolic activity of individual cells. They inject a glucose substance into my veins prior to the scan. When they do the scan, the cells will metabolically uptake that glucose. Cancer cells will uptake that glucose faster than regular cells (It’s very interesting that people think that there’s no relationship between sugar intake and cancer growth, because of this very phenomenon). This increase in uptake is called SUV (sugar uptake value). They compare the SUV of the cancer cells to the SUV of regular cells. The difference is measured in a number such as 2.5. This means that the cancer cells are taking up the sugar 2.5 times faster than your normal cells around that tumor. A wider variance in uptake value usually indicates a more aggressive tumor, but again, not necessarily. This all is definitely not an exact science. So in a nutshell, that is why both scans will be helpful in determining what this thing has done in the past couple of months.
Here is my tentative plan:

A. If it’s gone…hallelujah!
B. If it has shrunk, and seems to be responding to the treatment I’ve been receiving, then I will probably continue what I’ve been doing.
C. If it is stable, I’m not sure.
D. If it is growing, then I will either start chemo or radiation (most likely chemo), but
probably also continue doing some natural IV therapy through a clinic in Portland that
works with patients going through chemo/radiation, to offset any side effects from
treatment. I meet with that doctor on August 6th. He is willing to continue giving me IV
bags with the treatments that I’ve been doing, as well. If the tumor is gone, then I will
do a couple more bags (4 days/bag) every 3-4 months for the first year, just to stay after
any remaining cancer cells that might be floating around.

For those of you that know me well, I usually will have plans A-Z, and then backup plans for each one of those. So in the world of cancer, God has certainly humbled me and forced me into a position to rely upon his plans. This has been so challenging for me, but so wonderful, at the same time. It’s a challenge to try and figure out the balance between being responsible with the resources that God gives me through this journey, but also knowing that HE is ultimately in control, not me. I know that God is capable of healing me on his own, but I feel that it’s my responsiblity to put forth effort and be responsible with my life, health, etc…I love this parable:

A man was in an area that was being flooded, and everyone was being evacuated. The water grew so high that the man had to sit on his roof!
A boat came near and called him to come on board and be rescued. The man refused, saying only “God will save me.”
Another boat arrived, and the man again refused rescue, saying “God will save me.”
A third time a boat arrived. This time, the water was nearly up to the man’s waist, but he still refused, saying “God will save me.”
An hour later, the man drowned.
He went to Heaven and came face-to-face with the Lord. “Why didn’t you save me?” he cried.
“I sent you three boats!” retorted God.

With that said, my challenge has been to find those boats in all the little things that have surrounded my life these past several years. You guys, my dream and biggest prayer in my life right now is not just for healing, but for a ministry to come out of all of this. A ministry where I can help people find these resources, whether it’s through gathering information, finding them doctors, teaching people how they should be eating to make their bodies well. It’s hard to eat well in our society. So much of what we do centers around food, and you don’t really realize that until you start trying to restrict what you’re eating.

Anyways…I won’t get the results of my PET scan until probably Tuesday at the earliest, I’m guessing. Sometimes they get read the same day, but not always, especially since it will be on a Friday. I will be sure to post as soon as I hear, though. Please say a prayer for my dad this week, too. He has his PET scan tomorrow to see how the treatment has worked for his prostate cancer. We covet your continued prayers for peace. We have really been feeling that. You guys are amazing! Thank you for all that you do and who you are to me and my family. We are blessed!

So…..my scan today was very uneventful. That would be because I didn’t have one. Because I sprang this appointment on them at the last minute when I booked it a month ago, they were not prepared with enough contrast to inject in my body, which acts to light up any malignant cells during the PET scan. So at this point, I’m not scheduled to have my scan until August 8th, unless I can annoy somebody enough to have them make some earlier space for me. I did go ahead and schedule an MRI for next Friday, though, so that will be quite telling as to how effective this treatment was. Hopefully next time I blog about my scan, it will be because I actually just had one.

Well folks, I finished up DMSO last Friday night. I was so anxious to be done with it all that I actually did 2 doses that night, rather than one. So I double-dipped, just in time for one of our friend’s weddings on Saturday. Everybody was so sweet about it, but I know that I had to have been quite potent. I was trying to not pass out too many kisses, but it was really hard not to get close to people because there were so many there that I hadn’t seen in a long time. Oh well. I guess I’ll find out who my true friends are, eh?

I never did get the fever and chills, but both doctors at the clinic assured me that this could just be good luck. Not everybody has to get those, in order to have a good scan. My PET scan is this Friday and I probably won’t find out the results until the middle of next week, I’m guessing. My neurologist is booked out until October, so she will just call me with the results after they’re read by the radiologist. And so we wait. I’m not sure that I’ll ever get used to this waiting game. When it’s time for a new scan every couple of months, the anticipation can be quite nerve-wracking. I’ll keep you posted.

I’ll be honest. I am aching to see my family. The first week went fairly quickly, but this one is crawling. I almost had myself convinced that it’s actually Wednesday today, rather than Tuesday, but alas….

Treatment is going really well. Like I’ve said before, I really look forward to hanging out with the people at the clinic. It will be sad to leave, but I am so giddy about going. We will be on the Sodium Bicarbonate until this Saturday. Since I fly home Saturday morning, I will take the last treatment from this bag home (There are 4 treatments to a bag), and then finish that Saturday night in the comfort of my own home. Woohoo! Sunday begins DMSO, once again. All of Marvin’s family will be up for Anna’s graduation party on Sunday, so my graduation gift to her will be waiting until after her party to take my DMSO treatment.

We met with the doctor today that is supervising all of our treatments. They combined mine and my dad’s appointments together, even though I’m sure we’ll both be billed separately. We get the same reaction everywhere we go. “Wow, I’ve never had a father-daughter team before”. I just keep telling them that it’s my dad’s sad attempt to try and spend more time with me. Now that is love, eh? Anyways, he was a tad reassuring to me, in that he told me that if he were in my position, he would be doing the same thing. This is coming from a doctor that has his own separate private practice and is supportive of this because he’s seen it work, but is still very cautious about what he says because of the AMA and his medical license. So that was good to hear. At this point, I will be doing another full round of 20 treatments at home, which means I will be doing these treatments until July 20th. I scheduled my next PET scan for July 25th.
My parents will be staying for another week because my dad is getting internal treatments, as well as treatments through his PICC line. Through the internal method, the treatment is then able to hit his cancer directly. I asked if they could please just stick a tube in my right ear so they can administer it directly that way, hitting my brain. For some reason they always just give me a little courtesy laugh and walk away. Weird.

We finished our first set of treatments yesterday and started our second round this morning.  We are now on Sodium Bicarbonate, much to my mom’s relief.  Along with the change in treatment will come a change in our aroma.  Everything is going really well, other than my PICC line refusing to stop bleeding.  I actually look forward to our daily clinic visits.  You become sort of like a family with the people you are getting treated with, because you’re spending a couple of hours in fairly close quarters with them everyday.  The fact that we’re all going through this cancer journey together creates a small bond between us, as well.  It’s actually rather sad when people finish their treatment and leave.  This guy who’s been getting treated for 40 days had his last treatment this morning.  He was fun, and such a source of entertainment, so it was a little sad to see him go.  As quickly as he left, though, another person was there to fill his chair.  I’m tellin ya…this place is hoppin!

We received the results of our PET scans yesterday.  My dad had excellent news, in that even though his PSA is extremely high, his cancer appears to be rather low grade and is confined in the prostate.  We were a little concerned about the possibilty that it had metastasized, but that’s not the case.  My scan showed just a small lesion in the area that we knew it was.  It’s hard to compare an MRI with a PET scan, so we’re not 100% sure that it hasn’t grown since April, but it is still very small, so we take some confidence in that.

Other than getting treated everyday, we’ve just been hanging out.  We’ve done some shopping, of course, and I’m getting some good training in the software that I’m supposed to be testing.  It’s kind of cool because I can shop for a couple of hours, but then go back to the hotel and work, making up the money I just spent.  I don’t know about you, but I think that’s a pretty sweet system.  I’m guessing my husband does, too. 

My boys are being very well taken care of.  Anna, I hear, is doing an amazing job watching Tyler and Trent all day, as well as making dinner for Marvin and the boys.  What a blessing that whole situation is!!  Have I mentioned that before?  I can’t believe we’re already getting into the second week of treatment.  It’s been really good to be here with my parents and to spend time with all of these great people at the clinic, but as you can imagine, I miss my family! 

Well, we finally got through our first day of treatment.  We thought we were going to start yesterday, after our PET scans, but since the glucose they inject into our bodies before the scan doesn’t leave for 24 hours, we had to wait.  The clinic is on the Oral Roberts University campus, in what used to be ORU’s hospital.  This was a little surprising.  This university’s campus is crazy….quite ornate in a semi-creepy way.

ANYWAYS, the treatment went well.  We had some blood drawn first, so they can check red/white blood cell counts, etc… and then we received our first treatment that included high does Vitamin C, DMSO and Laetrile.  For those of you who don’t know, DMSO has a very distinct smell about it, and apparently my dad and I are already mildly emitting that smell.  We can’t smell it, because it’s actually in our bodies, but we can definitely taste it.  I plan on doing 2 full cycles of this treatment, which will be 40 days total, so all I can say is….my poor family.  All for a great cause, though, eh?  Part of the treatment cycle doesn’t include DMSO, so they promised me that they would time it to where I was on that part when flying back home to finish out my treatment there.  That was a HUGE relief.  Tonight we will get our PICC lines inserted.  My dad will appreciate not having to get the treatment through an IV after tonight.  His veins aren’t nearly as cooperative as mine are.  It took them a few times to get him going today.  I think my veins have just finally conceded to cooperate, after about the 1000th time of being poked by a needle.

We won’t find out the results of our PET scans until the end of the week, probably.  They just did a brain scan on me, but my dad had a full body scan to make sure that his cancer hasn’t metastasized anywhere else.  That poor guy was on the scanner yesterday for an hour and a half.  I was getting tired of sitting still after about 5 minutes, but only had to be on the scanner for 20 minutes total.  I guess that’s one of the good things about brain cancer.  It doesn’t metastasize anywhere else.  Yeah, that’s right….call me Ozzy Optomist.

I spoke with a family last week who has a little boy getting treated at this clinic for a brain tumor, as well.  I met their little boy today, as well as a little 5 year old girl.  It is just absolutely heartbreaking to see these little kids coming in, dealing with something that no child should ever have to go through.  These parents are just amazing.  The dad of that boy told me last week that he can’t even imagine how I felt when I was first diagnosed.  I told him that it had to have been a million times worse to hear that your 2 year old son has a brain tumor.  I can’t even imagine how much grace I would have to have to be able to go through a journey like that.  He has an inoperable astrocytoma, which is the same tumor as mine, but his is a grade 1.  He is through his first cycle of treatment and will be going through a second cycle at home.  His name is Curtis, if you would please pray for him.  I sat there watching him get treated, trying not to cry.  He is just a little bit older than Trent is, and his older brother Trent is the same age as Tyler, so I had a hard time not putting myself in their shoes.  Trent and I chatted about snakes for quite awhile, though, so that helped to get my mind on other things…such as reptiles.  The little girl that was being treated was the most beautiful little girl, who was just starting to grow her hair back from being treated with chemo.  Her name is Esther and she has neuroblastoma.  She is cancer free from her treatment, but they are following up with this treatment to try and mop up any remaining cancer cells.  Her cancer is similar to mine with a very high rate of recurrence, so please pray for her, as well.  Here is a GREAT story, though.  There was a girl that just got done being treated at the clinic for a Glioblastoma, which is grade 4 of my tumor.  She is my age and had a 1 inch sized residual tumor that was inoperable.  She’s back at home and it’s GONE!!!!  She’s doing another cyle to make sure that everything has been mopped up, but that is just crazy exciting.

It’s nice to have finally started treatment so that we can now get into a daily routine.  It was a little bit surreal arriving at our hotel on Sunday, thinking about how this was going to be my home for the next 2 weeks.  I was having a hard time yesterday, thinking about being away from my kids and husband for so long, but the sun is shining today and we are on our way to getting healthy.  I’m excited! 

We have finally escaped from our crazy lives and are relaxing in Maui. It is soooo good to be here just laying around the pool and soaking in the sun. It’s great to be with my parents, too. It hit me today that I have not spent Mother’s day with my mom in over 10 years. I couldn’t think of a better place to celebrate with her!

To update everybody on the “plan”, I have decided to try a natural treatment at a cancer clinic in Tulsa, Oklahoma in June, before I will do chemo or radiation. It is a combination of 4 different treatments given through an IV for a couple of weeks. I have to stay at the clinic for 10 days, and if all goes well, I can finish the treatments up at home. I’ll have a PICC line in my body, so once I’m home, I will just have to hook up to my IV bag everyday to finish out the treatments. Cool, eh? I’ve earnestly prayed about this decision and feel like it’s the right one. I have the option of chemo and radiation down the road if it’s needed, but I think that I have a great chance of beating this cancer going this route, so I’m going to try it! My dad has decided to do the same thing, as well, so we’ll be going to the clinic together. How many father-daughter teams do you think they’ve treated simultaneously at their clinic? I’m venturing to say we might be the first. He is going to try this treatment before undergoing surgery. He might do that afterwords, if needed. It will be very hard to be away from my family for that long, but I know God’s grace will carry all of us through this. He’s carried us this far, so I take great comfort in that. What a blessing to have my parents (my mom is coming, too, for moral support) there with me, though. Because of this, we have decided it’s best for Marvin to stay home with the boys so we’re not both away from them.

Thank you for being so faithful in praying for us and sending us your love and encouragement. We covet your continued prayers for healing and protection for our entire family.

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…