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…

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…

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 (-;

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…