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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: , ,

I’m taking over…

February 24, 2011 By 1 Comment

Chars & I last night

As Charysse preps for her surgery, I (Kyle, her brother) have taken control over her blog to help keep you updated on her progress. I will be posting major updates here as they come. If you’d like to know the play-by-play details, please follow her on Twitter. I will be posting more frequent updates there.

Thanks for all of your prayers and words of encouragement. She reads every one of them. They mean so much. Keep them coming!

—Kyle

Filed Under: Brain Surgery Tagged With: ,

Deja vu

February 23, 2011 By 12 Comments

The word that sums up these past several days perfectly.  This is the third time that we have traveled this road.  This will be the fourth surgery, but only the third here at UCLA. We arrived here late Monday night.  I had pre-op appointments on Tuseday which cleared me to have surgery tomorrow.  This includes bloodwork, chest x-rays, EKG, blahblahblah.  I’m healthy.  Well, from the neck down, anyways.

Our experiences here, really, are so rich whenever we come.  I am blessed with the most amazing soul in my neurosurgeon and she brings so much warmth and comfort whenever we meet with her.  Yesterday I had the crazy longest MRI of my entire life.  The tech was getting ready to take me back and Marvin was going to wait.  He told Marvin that it should only take me about an hour and a half to finish.  What??!!  An hour and a half??  I can’t move for that long?  I can’t scratch anything that is inevitably going to start itching because I know I can’t scratch it for an hour and a half?

The test was significantly longer than usual because it produced several images that were crucial for mapping out how the tumor would be able to be accessed when she does the surgery tomorrow.  We went over that with her today when we met with her.  One of the pictures gave us a clear view of how the tumor has intertwined with structures of my brain.  The first thing, and extremely crucial and a HUGE answer to prayer is that the tumor has remained stable in the four weeks since the last scan I had done when I was down here.  Some of you may be thinking four weeks?  That is hardly a significant period of time to allow anything to grow.  Not so in the world of brain tumors.  When these tumors become a grade 4, they are capable of doubling in size overnight.  I am not exaggerating.  Overnight.  The fact that it has remained stable definitely favors a less aggressive tumor than a grade 4, in which we are so incredibly thankful!  We won’t know for sure what the grade is until she takes the tumor out tomorrow and we get some pathology, but at this point, we’ll remain optimistic that it is a lower grade.

The bummer part of this tumor is where it lies and what it is wrapped around.  Because it has been a low grade tumor for so long and because these tumors don’t grow as round balls like most cancers do, they grow tentacles and this one has had time to wrap it’s tentacles around brain structures and nerve fibers.  Unfortunately it has wrapped itself around my optic nerve fibers.  I have already had some peripheral visual loss in the left eye in the upper quadrant.  With the removal of the tumor that has wrapped itself around those nerves, I will almost certainly lose the rest of my peripheral vision in my lower quadrant.  This means that I will have no peripheral vision at all in my left eye.  It is definitely a noticeable deficit, as it is, already, but it’s not anything that I can’t get used to.  My body will eventually learn to compensate for it by learning to turn my head more, etc. to see what I would normally see without having to do that.  She does recommend not driving for several months, which pretty much sucks.  No other way to put that.  I’m used to getting my driving privileges removed, but not for several months at a time.

The other bummer is the amount of tumor that can’t be removed.  The original part of the tumor that was left behind from the surgery 3 years ago because it was too close to the brainstem will still remain, as well as some tumor that is too close to the motor strip.  They will have some needles connected all along the left side of my body to monitor twitching movement while she is operating around this area.  If she gets too close to a motor area, the left side (because the tumor is one the right) will start to twitch, so she will know that she’s too close and needs to leave that tissue alone.

I have to say, though, with the what-if’s that we were facing coming into this appointment today, that I’m so thankful and feel like God has really answered so many of our prayers!  I’m so excited for surgery tomorrow.  I have so much peace about it.  God has proven faithful continuously, of course, and I eagerly wait to see how He’s going to continue to use my circumstances for His glory.  It’s hard, yes.  I struggle to hold it together, especially lately, yes.  But in the end, God reminds me that He’s still in control and I can’t help but be thankful for this journey and the things I am learning and the blessings that I have received because of it.  We are so grateful to so many of you that  are praying us through this.  You have know idea what you mean to us.  I wish I could hug each of you personally and tell you how much you mean to me, how much I appreciate you.  I pray that God blesses you for it!

It is late.  I have some stuff going on tomorrow, so I’m signing off, but just wanted to update you all.  Thank you so much for loving us.  We love you.  I’ll be back so soon to tell you how great I’m doing and what the next step is.  Until then…

Filed Under: Appointments, Brain Surgery, Linda Liau Tagged With: ,

Rest.

February 10, 2011 By 1 Comment

“Come to Me, all you who labor and are heavy laden, and I will give you rest.” – Matthew 11:28

Rest.  It’s such a simple word.  It’s a beautiful word that just draws me in to grab hold of, but I struggle to do that on a continual basis.  I’m not speaking of physical rest.  I have mastered that one quite well.  I am talking about every other aspect of rest:  mental rest, emotional rest, spiritual rest.  It is a word that has been mentioned to me by so many various people in my life over the past whirlwind of a month, to just rest in Him during this time.  What?  How is that possible?  There is so much to be done!  It seems completely irresponsible to “just rest”.  There are appointments to be made, and dare I say, make the list of all the possible “what-if” scenarios after the surgery is over and we know what we’re dealing with.  I’m a type A, which makes me a planner.  I plan A-Z.  I have back-up plans just in case A-Z don’t work out.  I guess one could interpret that in a way that I am a complete control freak.  It’s amazing that I still question the reasons why God is bringing me through these trials.  What is He trying to teach me?  Anyone, anyone?  (hint: I just said it)

If you read my last blog, you will see the point in time in which I was finally at peace with all of this and for the first time understood what it was like to just let go and rest in Him.  It seems like it should be so easy and so inviting, to just lay down my burdens.  He’ll take them!  He’ll take the weight off of my shoulders so that I don’t have to carry the load!  How can I resist that invitation of rest, especially in the middle of what seems like complete chaos right now?

Well, yesterday was a very convicting day for me.  It was such a productive day for me and I was so proud of the work that I accomplished through the gathering of information in preparation of what the future might hold with this tumor.  I made plans!  And I think they are great!  Ridiculous.  Completely ridiculous.  Did I pray about it?  Did I seek Him first?  Are they His plans?  I don’t know!  I didn’t ask!  Don’t get me wrong, you guys.  God gives us resources and I believe it is our responsibility to utilize those resources to do what you can to take care of business.  But seek. Him. first.  That is the lesson that I have not been able to learn seven years into this.  My time right now should be spent pressing into Him and seeking His face.  The scripture in Matthew I quoted at the beginning of this blog calls for action: “Come to me”.  He wants me to come to Him, seek Him, spend time with Him.  How do I do that?  Meditate on His word and commune with Him in prayer.  I can’t think of anything more restful than that.

I’ll be in surgery exactly one week from right now.  I feel like God has blessed me with the peace of mind to know that He is the perfect plan for the what-if scenarios that might come up next week.  I don’t even need a back-up plan.  He’s already thought of that, too.

“For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.”

- Jeremiah 29:11

Filed Under: Brain Surgery, Random Thoughts, Spiritual growth Tagged With: , , ,

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….

Filed Under: Brain Surgery, Linda Liau Tagged With: ,