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….