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Signed, sealed and delivered 2 times. UCLA finally chimes in…

October 30, 2011 By 1 Comment

Half of my cancer battle is fighting the cancer.  The other half, it seems, is getting my scans down to UCLA for them to review and tell me their recommendations!

I recently had my 3 month follow up scan on October 6th.  We found out the results from the local hospital only a couple of days later, but as mentioned in prior posts, we always wait to share any news until we hear from UCLA.  They are our “final answer” people, so when we hear from them, then we’ll share with family, friends, etc.  My scan was delivered to UCLA on a Tuesday, exactly five days after I had it done here in Oregon.  Perfect.  They would be able to review it at tumor board on Wednesday.  I would have my scan, a local radiology report and UCLA’s opinion all within a week.  BAM!  I finally had this baby down to a science, as I should after 8 years!  The great thing was that, yes, it was delivered.  The not so great thing was that nobody had any clue *where* it was delivered.  I’m not quite sure what I was thinking allowing the shipping lady to choose my method of shipping, which was Priority Mail, but nev-uh again.  The second round went to FedEx and of course it arrived by 10:30 Tuesday morning.

Drumroll please…..my tumor continues to shrink!!!  I was able to quickly talk to Dr.Liau the other day as she was walking out the door for surgery.  She said the part that is getting smaller is shrinking away from critical areas, which is great news!  My tumor that is left is around areas of the brain stem, which controls most vital functions in the body.  Because it’s shrinking away, she said that if/when there is more growth, that another surgery is an option and she might be able to get more of that tumor out.  The idea of surgery #5 is just overwhelming at this point, but probably because the numerous complications of #4 are still just a bit too fresh for all of us.  She also said, though, that she’ll never be able to get all of my tumor out.  There is more tumor, not attached to this main tumor, that is into brain that she just can’t touch.

She was really surprised to find out that I haven’t been doing any treatment since radiation.  They made it so clear before and after surgery that radiation was only going to possibly slow or stunt the growth of this tumor, but not shrink it.  NOT SHRINK IT!  I’m pretty sure I asked her that question and threw her answer back at her at least ten times as my reasoning for not wanting to pull out the radiation card, yet, when they wanted me to do it back in 2008.  Why would I do it if it won’t get rid of it?  Radiation is one of the only etiologies that has been linked to these brain tumors.  At this point, she thinks it’s best to watch and wait, getting a scan every 6-8 weeks.  Dr. Cloughesy, my neuro-oncologist at UCLA wants me to be on a chemo called BCNU, not being comfortable with me having a high grade brain tumor hanging out in my noggin’ that can explode at any time not being on treatment.  I think I’m doped up enough on seizure drugs and will save the chemo for ‘as needed’.

So, what have I been doing?  I have an entire army of people bathing me in prayer on a daily basis!  Really.  This is so clearly God’s hand controlling everything.  It’s medically not in their realm.  They never see cases like this, they say!  I have been hearing this out of their mouths for years, now.

How can this not be God’s hand?

I think so, too.

So blessed.

 

 

Filed Under: Health updates Tagged With: , , , , ,

Test results and the plan..

March 24, 2011 By 3 Comments

We got home yesterday from our trip to UCLA.  I can’t even begin to explain to you how thrilled I am to be done with that place for awhile.  I’m so ready for life to just settle down and for us to find some sort of normal, whatever that may look like.  I don’t like that when Trent greets me in the morning, the first thing he asks me is what doctor am I going to that day.  My kids are such troopers through all of this.  I’m so thankful that I was diagnosed when Tyler was only one.  This is all he’s ever known and it’s obviously all Trent has ever known, as well.  It has never been as intense as it’s been over the past 6 months, and that has definitely taken an obvious emotional toll on our family, but we’re hoping that things will finally quiet down and we can just focus on being a family and enjoying our time together, rather than upcoming surgeries and trips to doctors, etc.

This past month, since I’ve been home from surgery has been extremely rough for me.  What I thought would only be a couple of weeks of just taking it easy and healing from surgery turned into a month of not feeling well at all and not knowing why for most of it.  After going to a few doctors, Dr. Liau suggested that I go see an ENT to check out my sinuses.  We figured out that I picked up a sinus infection, probably before surgery already, and didn’t know it.  The surgery added fuel to the fire and I now have a very large infection that we’re having a hard time clearing up.  In hindsight, there were definitely early symptoms, but when you’re recovering from brain surgery in the same area as the infection, it’s hard to know what is causing the symptoms.  Unfortunately, I waited too long to get it treated and now have a mess going on in my head.  I had a CT of my sinuses done and if the infection doesn’t clear out in a couple of weeks, then I will have to have surgery to clear out the infection because I’m high risk.  The infection is sitting right next to my surgery site.  We think the infection may be what is causing all of this numbness that is still on the right side of my face.  The ENT thinks the infection is pushing on the maxillary nerve, so it’s probably not a permanent thing.  Love that!  So needless to say, that has been beyond frustrating to not be feeling well at all for so long, and it’s not because of the surgery!  I’m feeling great with all things surgery related!!  I’m on a heavy antibiotic and praying that it clears this thing up because I’m good on the surgery thing for now, thanks.

I finally received pathology news this week from my surgeon.  The tumor has indeed upgraded to a high grade tumor.  It’s not a grade 4, but a grade 3.  The official diagnosis is an Anaplastic Oligoastrocytoma.  I can’t say that I’m too disappointed that it has upgraded.  I fully expected that it had, given the rapid amount of growth in such a short period of time.  The growth was so extreme that it seemed almost impossible that the tumor wouldn’t be a grade 4.  A grade 4 is a Glioblastoma Multiforme, one of the most devastating diagnosis in the world of cancer.  Very fast, very aggressive and very lethal.  I am so inredibly thankful that one of those is not hanging out in my noggin.  I am now only one grade below that, though, so the harder part of the battle has now begun.  There are two pieces of tumor left that are too close to eloquent parts of the brain for Dr. Liau to have been able to remove them safely.  One is close to the Thalamus, which is where she left it during the last surgery, and the other is next to the Basal Ganglia.

We were in California for only 24 hours on this trip.  We wanted to get in and get out, and so we did!  We first met with Dr. Selch.  He is the radiation oncologist at UCLA.  He explained what would need to get radiated and what the side effects might be.  Because the area where the tumor was/is, is quite large now, a very large portion of the right side of my brain will be irradiated.  That is a bummer.  The guaranteed side effect will be that I will lose my hair at the site where the beams go into my head.  Will the hair grow back?  There is a 50/50 chance that it will.  Yeesh.  The other most common side effect during treatment is fatigue, but not everybody experiences that.  I’m still working with Greg, my naturopath, doing naturopathic treatments immediately when I got home from surgery.  There are many ways to offset this fatigue naturally, diet being a big one, so we have a plan.  The long term side effects of radiating this part of the brain are short term memory loss, which I’m already accused of  (: It can also have an effect on emotions.  I’m not sure in which way, but I guess we’ll find out!  They are irradiating the hippocampus, the limbic system, so many crucial structures to my everyday functioning, so there will most likely be deficits that may be a little frustrating down the road.  It’s one of the big bummers of brain cancer.  You’re messing with a part of the body that controls every aspect of your entire body.  Everything they do in there is affecting something else in another area of my body.  These deficits from radiation usually don’t rear their ugly head until several months or maybe even years down the road.  Thankfully the brain is extremely neuroplastic and there are many software programs that have been developed to help with regaining short term memory, etc.  Where there’s a will, there’s a way.  This girl has will.

They did some genetic testing on my tumor, as well.  Based on certain genetic mutations, they can predict how well a tumor will respond to radiation or chemotherapy.  It’s not an exact science because based on the testing from my surgery three years ago, my tumor should have responded well to chemo, but didn’t.  The test on my tumor showed that I have the IDH1 mutation.  This genetic mutation has shown to be associated with a better prognosis and has been shown to have a better response to radiation.  We pray that is true.

We also met with Dr. Cloughesy, a neuro-oncologist.  He is amazing.  He is so warm and personable, much like Dr. Liau.  I feel like I’m in extremely good hands with him overseeing my local treatment.  Based upon the pathology of my tumor, he has decided that chemo is not a good option for me right now.  He doesn’t think that my tumor will respond to it, so we’ll save that as an option for down the road.  We already tried Temodar, which is just a pill and a mild chemo, but is the first choice for brain cancer, no matter the grade.  It did not work for me, so the next chemo that would be coming my way, if necessary, will be the IV heavier stuff.  I’m so thankful that time is not right now.  I’m ready for a break from heavy stuff! (:

So that is hopefully the end of many months of chaos.  I’ll probably start radiation the first week of April.  It will go for 6 1/2 weeks everyday.  We are so incredibly thankful for all of the prayers and support from all of you during this time.  We have felt it all throughout each day.  I can easily say that these past six months have been the most trying months of my life.  It has just been one thing after another for such a long period of time.  There have been so many blessings through it, but geez.  Enough, already!

Thank you, thank you for your prayers, your cards, your phone calls, for all the different ways that you have loved on us and supported us through this time.  We feel so blessed to be loved by so many!

Filed Under: Anaplastic Oligoastrocytoma, Brain Surgery, Dr. Timothy Cloughesy, Health updates, Linda Liau 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: ,