Another one down…

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. (-;

Health updates

For those of you who are on this site to monitor what kind of treatment that I am doing that may be helpful in deciding your treatment plan, I am now adding which treatments that I’ve been doing in between scans on the ‘Health updates’ page.  You will be able to see the effects of the listed treatments based upon the corresponding test results.  Thought that might be helpful…

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

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…

Here’s the plan

After consulting with my plethora of doctors, here is the plan we came up with.  Dr. Liau is concerned that the chemo may not be working for my tumor, as it’s grown slightly since I started chemo in February, albeit slight.  She first recommended that I proceed with radiation, but after a phone conference with her she agreed with my appeal to give chemo a couple more months to kick in, scan again and then go from there.  I’m still hesitant to play the radiation card for a couple of reasons.  First, it’s still only a low grade tumor.  I can only do radiation once, so if it happens to upgrade down the road, I don’t have this option.  Radiation is generally not used for low grade tumors because of this reason.  Second, she said that radiation will not shrink this tumor, it should just keep it from transforming to a higher grade tumor and hopefully keep it from growing more.  My thought was that I’ve had this thing for 5 years now and it’s mostly remained low grade so that wasn’t too concerning for me, even though it’s always a risk.  If radiation would actually shrink this thing and get it out of my brain, then I might be more willing to jump on that bandwagon.  I asked her what the deficits would be radiating the area that needs to be radiated.  She said that I will possibly have more visual deficits than what I already have, as well as memory issues and hair loss at the insertion site.  Not too bad, but still not my choice at this time.  I’m so thankful that she’s open to just giving me her advice, but still willing to let me make the decision and supporting me in what I decide.  I can’t imagine going through this whole mess without her!

On the alternative front, we’re going to keep on keeping on.  We’ve been keeping DMSO out of the mix for the most part since last November, so we’ve thrown that back in at quite a high level.  It stinks, literally, but it seems to have been effective during last summer and fall, so we’re going to see what we can do with it back in the schedule.  I am alternating the DMSO and high dose Vitamin C on the days that I’m not on chemo to throw something at this tumor every single day.  Since I’ve been told by my surgeon that there is nothing out there right now that can shrink this tumor, I’m going to try anything I can to make that happen.  For those of you wondering, she is aware of what I’m doing and supportive, as is my oncologist.  I’ve been blessed with several doctors in my life that will let me make a lot of my own treatment decisions with their guidance, but support me in whatever I decide.  LOVE that.

Thanks for all of your emails, phone calls, cards etc….it’s great to feel loved and supported.  Next scan is June 30th….you’ll be seeing me before then (-;

Quick Update

I received an email from Dr. Liau at UCLA and she has recommended that I proceed with radiation at this point.  The tumor has grown only slightly since February, but since the chemotherapy hasn’t controlled the growth, she’s concerned about more growth.  This news is a little devastating.  It’s not a card that we wanted to play right now.  It can only be done once and it is usually quite damaging, considering that your cognitive functioning is being radiated.  I have a phone conference setup on Wednesday with her so that we can discuss things further.  I have many questions before making this decision.  I’ll probably make a decision by Wednesday, so I’ll post then what that is.  Please pray for comfort and wisdom right now.  So appreciative for all of you…