Test results and the plan..

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!

Comments

  1. All I can say is that I love you, Charysse, and hold you close to the Lord in prayer. Thanks for sharing this info. I am overwhelmed with what you are going through, and am constantly amazed at what God is teaching me through you, even though I have 20+years of life experience over you. May God bless you, keep you, and hold you close every step of the way.

  2. Andy & Shannon says:

    We love you. We are praying for you! Please put us on the schedule for April!
    God bless you!

  3. Hi Charysse – being the wife of a brain tumor survivor brings back so many memories by what you are saying and feeling. I am so glad you have an army of friends praying for you. At times I just couldn’t pray, but I could feel that I was being carried in prayer– and hope you are feeling that in a very strong way. I cannot explain how it feels unless you are the recipient of the power of those prayers. Some of the same people who prayed for us are now praying for you too.

    I am praying that today is being a good one for you.

    H = Hold
    0 = On
    P = Praying
    E = Expectantly & Earnestly

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