IVIG #2, check...

So I can cross off IVIG for the first leg of my trip here in the D. I got a little crazy today... The IV that was in my arm the last couple of days got kinked plus I forgot to put Heparin in after my infusion was over yesterday. So, as an experiment and for lack of patience, I decided to try and do the IV myself, yikes! I don't know what I was thinking as usually I don't even look when they poke me. I've given myself shots before in the stomach for my GCSF so I thought I could do the IV... I got the needle in but I guess I missed the vein as I tried to draw blood with the saline and nothing came out. I think I could do it next time if I really had to but think I'll leave this to the nurses going forward ;)

In the spirit of do it yourself (and celebrating the regained functionality of my hands), I decided I'd give Chili a haircut yesterday! She was looking pretty ragged as we let her fur grow out to keep her warm for the Michigan winter. She pretty much looked like a Wookee and now she looks like a puppy again :D It's definately not a professional grooming job as there are some "hacks" here and there but I don't think she'll mind ;)


Chili the Wookee :D


Chili groomed!

So like I said, I'm off to New York tomorrow. I have a PET/CT scheduled for Monday morning. I'm scared to get the results as I can feel the tumors in my back all the time now. It's especially uncomfortable when I'm lying on my back or sitting in a car/plane. I'll be interested to see how much my disease has grown in the 2 months I've been off therapy... I meet with the doctor later Monday afternoon where I'll be given the SAHA and Niacinamide pills. It's going to be challenging getting all these pills down having to take 16 Niacinamide horse pills and (I think) 5 capsules of the SAHA every day. The trial coordinator Sean confided in me that he thinks most of the nausea issues have to do with the fact that 20 pills are sitting there in your pipes. Because of this, I'm bringing my coffee grinder with me and if I have any problems, I'm going to grind up the Niacinamide and put them in a smoothy! Sean alluded that this was ok so I'm not going to mess around...

I just hope this stuff works... The pain/discomfort is starting to freak me out and I'm tired of taking pain meds. I figure I'll know if it's working based on how my back feels. Plus, the protocol calls for a scan after 4 weeks. I have a back up plan just in case as there's a new trial getting ready to open here in the D at Karmanos called RAD001 (another daily pill) which has been getting good results in Hodgkins. Of course my hope is the SAHA will do the trick and I can just stay on that for the next 35-40 years ;) Nothing wrong with dreaming right?!

Peace out, Chris