Blogging in B Minor

Like everyone, we are in the middle of trying to get everything wrapped up for the holidays.  It’s a bit more difficult this year – I am so used to just flying up on a ladder and putting lights up and getting things down from the attic but with the deficit in my left leg I just can’t do some of the things I used to do before.  Par for the course.

We did get the cards ready and decided on the do it yourself picture this year and it came out I think as best as it could – we couldn’t get Keegan to smile as you can see – but he’s 17 months old and wasn’t in a great mood.  The picture was embedded on a great background which I didn’t include here – just the picture so at least this part is done.

While we were running around, I also snapped this picture of Rachael and the boys.  This was all over at a new shopping mall called The Fountains in Roseville – it’s across from a huge mall called the Galleria but a real nice place to walk around.  Of course you’re wondering where I am!  Well in picture on I’m holding on to Keegan’s left leg firmly so he didn’t squirm away and I took the second picture.  Things blew apart shortly after what ended up being the “Holiday” picture so we got some coffee and made our way out of there.  It was a lot of fun though in spite of the challenge it is to take pictures with kids.  Too bad Keegan wasn’t as thrilled as he was in the picture with Mom!  We probably should have brought someone along and tried for a family shot but oh well.

So, this week brings my second Avastin infusion.  That will be on Tuesday.  I also now know I’m slotted for the first week in January for the vaccine.  It’s been a winding road with that as you know.  So, we’ll move forward with Avastin and when it’s time for the leukapheresis which is the last step before the lab makes the vaccine I’ll move forward.   It’s about $2K and I’m not sure if insurance will cover it but it really doesn’t matter much – we’ve got to move forward with this if it makes sense.  Worst case, the Avastin is doing it’s job, which means it’s shrinking the area where the resection took place and any residual disease and we keep using it and introduce another chemotherapy such as irinotecan or accutane.  Accutane has been used for severe acne but has been used successfully for brain tumors in concert with Avastin.

So far I’ve been fine with the Avastin – no sign of side effects.  My med levels seem to be ok as well.  Not much in the way of vertigo symptoms.  I’m watching out for break-through seizures at this point though.

Alternative Medicine

I’ve just started looking into some interesting information I obtained through the Annie Appleseed Project.  My brother is connected to an Executive at the Love Hope Strength Foundation and she referred me to a board member at the AAP.  To make a long story short, they are proponents of the work  of Stanislaw R. Burzynski, MD, PhD at the Burzynski Clinic.  He has some interesting approaches involving antineoplastons.

She forwarded me a lot of information so I’m just started to go through it and I’m very grateful for the info.  I don’t have much else to share at this point but will fill you in as I learn more.  Not even sure if it’s something I will pursue but I will look at anything and everything.

Cheers,

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