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To God Be the Glory!

March 18, 2012 By 3 Comments

I will mention first, because I’m sure that is why most of you are here, that God has once again performed the miraculous!  My tumor has decreased in size and is showing signs of becoming less aggressive in a couple of locations since the last scan in December.  This is only the hand of God!  I am truly humbled by His grace, realizing where I was exactly a year ago right now, wondering what life would be, if any, a year later after the grim news they handed me after my fourth brain surgery.  Yes, Jesus loves me!

But, I have to tell you that this isn’t what has me smiling so much, lately.  It’s been a very turbulent year for me.  I’ve blogged about that a bit.  The area that this tumor has now moved into is responsible for a lot of critical functions, which is why they can’t remove all of it.  One thing that I have really struggled with that is extremely uncharacteristic of me, is my motivation level.  It doesn’t help that I don’t have a job, so I’m not jumping out of bed every morning running off to a structured day.  It hit me not long ago as I was thinking about the person that I’ve become over this past year and how I can change the things that I don’t like about that person, that my Radiation Oncologist and I had a conversation about what kind of side effects I would be dealing with as a result of the very large radiation bed in my brain that he hit for 6 weeks last year.  “Charysse, your ‘get up and go is going to be gone’.”  Wow, he wasn’t kidding.  Before I remembered that, we were thinking that maybe I was having depression issues as a result of being on 4 seizure medications.  I just wasn’t me and I didn’t have the energy or will power to want to change that.

Until one day…

God reminded me that I was trying to find my “wholeness” in all the wrong things.  I know why He’s given me this trial.  So much like Paul, I think He’s given it to me to keep me humble.  If I’m feeling well, I easily get wrapped up in my own plans and in my own dreams and ambitions and suddenly the world around me gets blurry.  But I’m to a place, now, where my health has been impacted so much by this cancer that I’ll probably never get back to the whole person that I once was.  I think I expected to breeze through this last surgery and the ensuing radiation and then get back to the person I was prior to surgery.  C’mon, Charysse.  Four brain surgeries?  Do you see the dropping jaws of the poor MRI techs that see your scans for the first time?

A few days ago, I came across this scripture:

“For this reason I bow my knees before the Father, from whom every family in heaven and on earth derives its name, that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner man, so that Christ may dwell in your hearts through faith ; and that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God. Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen” Ephesians 3:14-21

It was such a good reminder for me that my fullness, wholeness and ultimate contentment will be found only in God alone.  This trial is so hard, but friends, I love this trial.  God is always so faithful to steer me back on the path, which ultimately leads to blessings that seem so undeserved.  He is able to do far more abundantly beyond all that we ask or think….and He did!  But more importantly, He reminded me that this trial isn’t about me.  It’s about a lot of you, and probably a lot of people I’ll never meet.  There is so much peace and joy in that, and I’m so thankful for his gentle reminder of that.

to God Be the glory!

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More Fingerprints

October 3, 2011 By 3 Comments

One thing that is so nice about having cancer during this day and age is the internet.  You can find easily find information, valuable resources and network with other people that relate with what you are going through.  I love (and hate) reading people’s blogs that are dealing with my same diagnosis.  It can be so inspiring, but at the same time so devastating, especially when the ending doesn’t turn out how anybody would have wanted it to.  That’s why it’s especially frustrating when there are people like me who have a blog and don’t keep it updated!  I’m alive 8 years later post diagnosis!  My story is so inspiring, because doctors say I have beaten the odds!  What is wrong with me?  People that don’t know me and how I’m doing probably come back to my blog for an update and see that I haven’t written on it for almost six months.  If it was I looking for the update, I would want to hunt that person down to see if he/she was still alive.  How did radiation go?  What did UCLA say?  Do you know I’m waiting on pins and needles to see how you’re doing, because it gives me hope? (all things I’ve thought while following others’ journeys).

Point taken.

Well, UCLA had some amazing news for me about my July scan!  My surgery in February had split the one very large tumor into 3 very small tumors that all lie against different parts of the brainstem.  She got as close as she could to those different areas without touching the brainstem, which is very impressive, as well as very disturbing to all of my other doctors who look at my scans.  Anyways, one of the tumors had responded to the radiation therapy and is smaller in size!  This is totally God’s hand because they weren’t expecting for the tumors to ever shrink in size because of the radiation.  They were just hoping that the tumors would stop growing and remain stable.  Also, when brain tumors do respond to radiation, it is uncommon for it to show up on a scan until at least 3-6 months down the road.

The summer flew by, of course.  We were able to get away for a week camping with the boys in June in Hells Canyon.  It was really good for us to spend some time away from life, as a family.  The boys, especially Trent, were really feeling the impact of me going to the doctor and the hospital everyday for 6 weeks.  He’s so easygoing, so he just rolled with it, but I could see the emotional impact.  He’s young, but he could sense something was off when he had to go to grandma’s house everyday for so long.  One thing I’ve always been thankful for with this cancer journey is that it started when my kids were young enough to not know life any other way.  Mommy has always been sick and has always had to go to the doctor/hospital frequently.  Tyler was one when I was diagnosed.  Trent was one when my tumor recurred.

This past year has by far been the most straining and stressful for our entire family.  Being sick before the surgery and into the beginning of summer was a bit (too) much for everybody.  What’s that saying “Happy mom/wife, happy home”?  Indeed.  It was a really dark time, but God made His purpose known to me.  I didn’t like it, but He was gracious enough to show me why He was allowing me to go through it, which was comforting enough to keep me going.

We learned in July why I was feeling so ill through much of the Spring into Summer and were able to correct that (medication).  Once we figured that out, I felt like me, again!  I’m SO very thankful for that feeling!!  I haven’t felt like myself for about a year, now, since the domino of one piece of news after another last August into finally getting my meds adjusted recently.  I am on rather large doses of not one, not two, but FOUR seizure medications!!  Now you have to understand that almost all seizure medications have drowsiness and depression listed as the first 2 side effects, so finding the right combination of meds at the right doses (I was toxic on one) where I won’t have seizures, but I still feel like ME has been a major accomplishment.  This leads me to another amazing thing God has done in my life.  I haven’t had a grand mal seizure since I went into status epilepticus last October!  I have simple partial seizures every now and then, but I’ve never gone this long without having a grand mal in the past 8 years since diagnosis.  Except for those of you who have lost the privilege of driving, I can’t even tell you how nice it is to be able to go somewhere whenever I want to, to pick up or drop off my kids at school or to even just run to the store without having to call somebody and ask for a ride.  I have even gotten to the point where I can drive without fear, which is really amazing.  When I drive now, I don’t feel a rising panic when I see a flash of light, thinking that it’s my seizure aura starting and that I need to pull over right away and call somebody.

God has blessed me abundantly this summer, and I’m humbled again as I reflect upon His fingerprints over the past year.  I love doing that.  I love seeing where He was ahead of me when it felt like He wasn’t there.

I don’t know what you’re going through, but if it seems like God isn’t there right now, look back over the past however long you need to and look for His fingerprints.  See where He worked out situations that only He could have orchestrated, or ways that He protected, provided and proved Himself faithful.  I promise you’ll find them.

I feel like this post is just a Me, Me, Me, but there are so many great things that God has done for me, lately, and I wanted to fill you in on them.  It has taken me so long to update my blog that it’s already time for my 3 month scan!  It will probably be the end of this or the beginning of next week.  As always, thank you for your hugs, your faithful prayers, your cards, your continual love.  We are continually grateful for each and every one of you!

 

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Another one down…

March 1, 2011 By 6 Comments

I know I wasn’t very diligent about keeping anybody updated while I was down south.  It was killing me, but the biggest reason was that my pain factor is quite a bit more significant with this surgery than it has been with any of the past surgeries.  I was able to jabber a little bit with Facebook, but much more than that felt like more effort than I was capable of.  These surgeries have been getting so easy to bounce back from that I’m trying really hard to not get really frustrated by this limitation.

 

But, wow, what a whiner!  GOD WAS SO FAITHFUL THIS WEEK!  So incredibly faithful.  I ask myself this all the time:  why do I ever doubt?  My worries and fears coming into this surgery that have all been expressed in previous blogs were all covered.  They were ALL covered!  Dr. Liau wasn’t able to remove all of the tumor, but we knew she wouldn’t going into this, so I can’t say this was ever a fear.  My vision!!  There was rather significant swelling in my brain when she did surgery, so there is probably a similar amount of swelling now, which is always common after any surgeries.  This swelling and the tumor was pressing on my optic nerves creating several visual symptoms that have been going on for a couple of years now.  Two of those symptoms have already resolved!  At this point, the vision that she said would most certainly be damaged does not appear to be any different.  It’s not something that might not show up down the road when there is healing and scar tissue buildup, but right now I’m really trying to just hold on and claim God’s protection of that vision during surgery, that He spared it.  It may seem silly, because in the grand scheme of things, I am dealing with brain cancer, but the idea of losing so much vision in one eye was bothering more than anything coming into another surgery.  It has some significant long term implications if it limits that vision.  I consider this a miracle!

The other amazing answer to prayer is that this tumor appears to be mostly low grade at this point.  With the sudden shock we received recently that the tumor we thought had only subtly grown over the last three years had really tripled in size and now showed hot spots, it only seemed inevitable that news would come that it was aggressive.  We’re still waiting for final pathology, which should come this week, but the fact that she had so many tissue samples tested during surgery that were consistent with low grade is very encouraging.

I can never just pass over lightly God’s protection through these surgeries.  It’s brain surgery.  It was a very long surgery and I am home and feeling pretty well, already.  I was doing pre-op appointments only a short week ago, although it seems much longer than that!

Now that I’m home, I’m enjoying reflecting on this past week and seeing God’s hand in the events of the week.  Oh, how I wish that everybody could go through experiences in life where it puts them in a place that allows them to reflect and relish in God’s goodness.  Not that I want you to go through brain surgery, but it’s a beautiful thing to be in a position where you are constantly looking at how God is working out details in your life.  I may only be in my 34th year of life, but I feel like He has allowed me to live  so much more life than that, already, and I have to say I’m so thankful for it.  I’m thankful for the depth of maturity that I’ve been able/forced to acquire because of it.

Our usual routine on our way down to UCLA is to visit Marvin’s family in northern California.  It’s a great way to see everybody and the by far our biggest blessing has always been the opportunity to spend a little bit of time with his Grandpa and Grandma Visser, who are Marvin’s mom’s parents.  I was originally scheduled to have surgery on February 17th.  We all came down with the flu, so the surgery was postponed a week.  If the surgery would have stayed on schedule, we would have been able to see Grandpa one last time.  By the time we had traveled down that way, he had what we thought was a really bad infection and decided not to stop in for fear of me getting sick.  Only a few days later, Grandpa passed away.  It was sad that we weren’t able to see him one last time, but since we were down in California, Marvin was able to go to the funeral, which was such a blessing for him and for his family!  So not only was he able to honor his grandpa by being there for his funeral, but he was also able to see his entire extended family because his crazy huge family had all flown in for it.  I had just gotten out of surgery 40 hours earlier, so I opted to stay behind and rest (:  The timing couldn’t have been better.  Not that I wanted to postpone the surgery one second longer than it had to be, but I have to say that I am thrilled that it was because of this.  Marvin’s uncle is a pastor and performed the service.  He spoke about God’s fingerprints in grandpa’s life, and that is exactly how I would describe this.  He had it all worked out.  There was a reason we got sick.  I’m content with this being it!

Dr. Liau is supposed to get back to me in the next day or two with the pathology of the whole tumor and the recommendations of the tumor board for what I should do next.  At this point, they seem to be really pushing radiation.  They will be doing some genetic testing on my tumor, though.  They are able to tell whether my tumor will be more sensitive to chemo or radiation depending on the results of this testing.  I will post the updated information of what life will look like over the next few months when I get it.

Meanwhile, I just want to say thank you so incredibly much for your constant outpouring of support to us!  We have been overwhelmed with love and it is really carrying us through some trying times.  This surgery has just felt different in so many ways.  It has been a lot harder and so we are so thankful for all of you that have been constantly encouraging us with cards, notes, emails, phone calls….everything!  Thank you for loving on my family.  I’ve always said that it has to be so much easier being the patient than the family member.  My husband is incredible!  My kids are troopers!  Thank you for taking care of them, as well.

I’ll be back with deets soon.  Really, this time. (-;

Filed Under: Brain Surgery, Health updates, Linda Liau, Treatment, UCLA Tagged With: , ,

So much to talk about!

December 13, 2010 By 20 Comments

I’ve learned about myself over these past few years that when the going gets tough, I tend to internalize.  I could have written about 10 blog entries over the past two months with all of the latest drama that I have mustered up, but I guess I haven’t really been to the point where I actually want to sit down and talk about it.  I don’t really like to now, but I know that a lot of friends and family come here to keep up to date, so here it is!

It started on an evening back in October.  I was sitting in the living room with the boys and my visual seizure aura popped into my vision.  I hate that thing!  I’m so incredibly thankful for these auras, though.  I know at the point that aura comes on, that I have about 30 seconds to find a safe place to lay down before everything in my vision is swirling so much that I have to close my eyes to keep the pain away of my eyes trying to focus on one thing.  So I run into my bedroom and laid down on my bed.  I know it’s a safe place for me when I finally go into the seizure and become unconscious.  Marvin runs to my side while I’m lying on the bed.  I’m actually able to get my breathing under control while my aura is still circling in my vision.  Usually my heart is racing and I am panicking by now.  I was praying that the aura would subside and that the seizure would never progress.  Not at all to be.  Not only did I have one seizure, but my seizure progressed into status epilepticus.  What?  Status epilepticus??  I’ve read about that!  Do you know that people often die from being in that state?  Those thoughts all ran through my head in about .9 seconds.  What that meant for me was that my original seizure kept rolling into another seizure, which turned into three seizures.  I never regained consciousness for more than a few seconds between each one and not at all between one of them.  Scary.  What was even more disturbing was that at the end of my seizure, I lost all functioning on the left side of my body, from my head down to my toes.  I woke up and heard Marvin keep telling me to wiggle my left toes.  I was wiggling my toes and was getting so irritated with him because he kept making the request, but what I thought were my left toes I was wiggling, were merely just the right.  He called the paramedics and I went to the hospital to make sure that all of my blood work and vitals were good, which they were, so then I could go home and sleep.  If I would have been more alert, I would have pushed for a scan to make sure that the tumor was behaving.  Any ordinary breakthrough seizure can signal tumor growth, let alone a seizure that turns into epilepticus.  It was really late at night and the ER doctor thought it would be too much of a hassle to try and get a read, so he just sent us home.

The next day, I started having some lingering numbing sensations throughout the left side of my body, which absolutely frightened me, so I went back to the ER.  This time, though, I wasn’t leaving until somebody stuck me in a MRI machine to see what was going on in my noggin’.  Thankfully the people at the hospital are so absolutely wonderful to me and they were able to squeeze me into a slot to get a scan right away.  It didn’t take too long for the ER doc to come over and tell us what I had already suspected:  tumor growth.  He sat down with the radiologist and the radiologist had just told him that there was small growth of the tumor.  I had 20 other questions about this new “growth” that the ER doctor didn’t know the answer to, so I called the radiologist the next day.  He was great and went over my scan with me.  He said that yes, there is an increase in the signal abnormality (that is how tumors show up on MRIs), indicating growth.  Ok.  But, there was a bigger issue he was concerned about.  Ugh.  I have some ventricles in the right side of my brain that had slightly enlarged.  Was it trapping of cerebral spinal fluid, or could it be an “extension of disease”?  He wasn’t sure, so scans were sent to UCLA for their review.

It was an eternity until I was finally able to speak with Dr. Liau on the phone about what the consensus of the tumor board was about my scan.  She had already mentioned to me in a prior email that they said there was growth, so my gut had been twisting for a few days, already, in anticipation for what they were going to say.

Finally, around 10 am on a Thursday morning, I got the call.  It is the sweetest voice on the other end.  She stammers a little bit and asks how I’m feeling.  She is so incredibly compassionate.  Neurosurgeons don’t make personal phone calls, especially when you’re a nationally renowned neurosurgeon.  She wanted me to know that, yes, there was some growth in the tumor.  I couldn’t bare the anticipation any longer, so I asked her before she could say it.  Is there another tumor?  Yes, she says.  I asked how big and she said that she thought around the same size as the other, which is a little less than one inch.  The new tumor is in the Insula.  It is too deep to operate, much like the original tumor, so removing it isn’t an option.  My gut is sick and now on the floor for the remainder of the conversation.  But she is just so sweet.  I’m talking to this woman, and she is handing me the most horrible news anybody has probably ever handed me, and I just want to reach through the phone and hug her!

So what’s the recommendation?  The tumor board, which I guess I should explain what that is.  The tumor board is a group of radiologists, doctors, oncologists, neurologists and professors that work at UCLA and gather together every Wednesday morning to review patient scans.  They reviewed my scan and the consensus was surgery and radiation.  Confused, I told her that I thought the tumors were inoperable, holding out the very, very slightest (I knew) of hope that maybe something changed and it was all of a sudden operable.  She told me the original tumor has had very subtle growth since my last surgery in February of 2008, so they recommended her taking out that tiny growth.  Bummer.  I was shooting for her taking the whole thing out.  They would go after this small of a tumor for two reasons.  One is to get some pathology to see what the exact grade of the tumor is.  The other would be to alleviate some of these symptoms that I have.  The biggest bummer about tumors in the brain is that it doesn’t take much of anything to disrupt something else in a big way.  The tiniest amount of growth that I’ve had has affected my vision enormously.  This tiny growth has caused my seizures to have gotten to the point where I’m now on  3 seizure medications to try and control them!

What did we decide?  She knows that I’m not willing to use the radiation card, yet.  I will do radiation at the point when the tumor is high grade and will more likely respond to the damaging effects of the radiation.  With low grade tumors, which we’re assuming mine are, the cells are not extremely abnormal, as they are in higher grades.  The more abnormal the cell, the more fragile the cell and susceptible to whatever is being thrown it’s way to kill it.  We’re not there, yet.

We decided that surgery is too aggressive right now.  The risks outweigh the benefits and we wouldn’t treat any differently than what we’re already going to do, anyways.  We’ll put that off.

So Temodar, it is.  I started my first round of chemo, after being off for a couple of years, a couple of weeks ago.  I got quite sick from it this time around.  Everybody swears that I was this sick last time I was doing it, too, but I don’t remember it being anything like this.  I guess that’s the part of your brain that blocks out the bad, remembers the good.  I have a much better game plan in place for when I start this next round to hopefully stay ahead and ward off any of the side effects from it.  The next round begins the day after Christmas.

I was quite thankful that Dr. Liau and I were on the same page about which treatment to pursue right now.  Any of you who know me or who have read my blog know that I am definitely one to make my own decisions.  I am in constant contact with several doctors that manage different aspects of my disease.  I love having that many people because I can get several different opinions and then pick out what I agree with and what I don’t.  Ultimately, it’s my body and these are my decisions.  I have been so blessed with Dr. Liau because she has been supportive in all of my decisions, namely the one to go off of chemo and stay only on homeopathic IV treatment.  She is a gem.

And speaking of the homeopathic stuff, my naturopath and I have started that up again in full force.  If you’ve been following this blog, that has been my main treatment since I visited a natural cancer clinic in Oklahoma a couple of years ago.  Since we were having such success with it, we decided to cut back on the aggressiveness of the treatment this past summer to see if we could back off, but still keep the tumor in check.  A big part of this decision was because of the expense.  It’s not a cheap decision to go the homeopathic road, but I believe in it with all of my heart!  The other reason was the time/emotional commitment of being hooked up to an IV pole everyday, although I am fortunate enough to be able to do that at home while watching football.

So after taking much of the summer off of doing any treatment, which was a much needed/loved break, we’re hitting it as heavy as we can right now.  I know enough about these tumors to allow my mind to be satan’s playground right now.  I’m really struggling with trust.  I know what these tumors can do, how quickly they can kill.  What if that’s God’s will?  I’m having such a hard time letting that go and laying it down at His feet.  I know, I know, I KNOW that His grace is so sufficient.  It has been so evident in our life when this journey started almost 7 years ago.  He has a plan.  He has a purpose.  I need to be ok with whatever that might look like.

Many of you are asking what the next step is.  Marvin and I will fly down to UCLA in January so that I can get an MRI and a DOPA PET scan done on their machines.  The DOPA PET, as opposed to the more common FDG PET, is more sensitive to low grade tumor cells.  It can better distinguish low grade tumor cells from swelling, scar tissue, or anything else that may just be something benign.  It’s an easier way to know exactly what we’re dealing with, without having to go under the knife at this point.  If those scans show some significant growth, then surgery will most likely ensue ASAP to get out whatever she can.  A decision will have to be made at that point of whether to do radiation or not.  Dr. Liau said that if there is just some minor growth on this next scan, that we will likely just continue on the Temodar to see if we can get some response from the tumors.

So that is the plan at this point.  Temodar, homeopathic IVs and a TON of prayer.  There is no treatment more hopeful than prayer!  Thank you so much for your outpouring of love upon me and my family.  I am continually in awe and humbled by the cards, the calls, the meals, the hugs, absolutely everything that you guys shower upon us all of the time.  It’s only by God’s grace and with friends and family wrapping their arms around us like you do, that is getting us through this extremely difficult time.  Just to let you know, we are not sharing a whole lot with our kids about this.  Trent is too young.  Tyler knows I have a tumor.  He knows it causes the seizures that he unfortunately has had to witness on more than one occasion.  We haven’t told Tyler about the second tumor.  We figure, why?  If there comes a time when we need to sit down and talk about it more, then we will do that.  We are wholeheartedly believing, though, that it will never come to that time.  We are believing in God’s faithfulness and His healing hand in my life!

Thank you, again, for all you do.  We cling to your prayers and covet them every single minute of every single day.

With so much love….

Charysse

Filed Under: Health updates, Linda Liau, Scans Tagged With: , , , , , ,

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

August 5, 2009 By Leave a Comment

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…

Filed Under: Fodder, Just life, Scans, Treatment, Tulsa Treatment Tagged With: ,

Scan Results

May 8, 2009 By 2 Comments

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!

Filed Under: Linda Liau, Scans Tagged With: , ,

UCLA Responds

February 19, 2009 By 4 Comments

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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Scan Results

February 6, 2009 By 6 Comments

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…

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Good news!

September 5, 2008 By 2 Comments

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.

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Wow, we’re exhausted!!

February 19, 2008 By 11 Comments

    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….

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