Saturday, April 17, 2010

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

6 comments:

ConundrumChum said...

I have to say the doing your own IV thing totally gave me the heebies. Yuck!!

Good luck with everything else.

Donna said...

Hi Chris,
I came across your blog months ago and check in on you weekly and I wanted to send you lots of positive thoughts for GOOD test results on Monday.
I myself have battled non-hodgkins lymphoma for the past 7 years and am currently in remission after a stem cell transplant.
I am so sorry you are going through all this and wanted you to know I will be thinking of you tomorrow and praying your results are good.
Also your dog is ADORABLE!!!!!
Good Luck
Donna Boston, MA

Veronica said...

So....a career in nursing not an option then??! I would've totally freaked if W had tried anything like that!!! I mean, that's why the nurses get to wear a uniform - to show they're trained for something!!!
Here's hoping the scan doesn't show too much progression (can I dream of none?) but I know how well you know your body - at least there shouldn't be any nasty surprises!

And dreaming is good for the soul - many dreams come true, so why not yours.........will be thinking of you next week........Vx

Anastasia said...

Chili is lookin good! I think you did a very nice haircut job, Chris. :) <3

Anonymous said...

Hoping you are doing ok and hope you received some positive news!! Keeping you in my thoughts and prayers.
Donna
Boston

Kathy McPherson said...

I am sure that since the nurses make it look so easy it seemed logical to give your IV a try...best wishes and prayers for you in taking all of the pills and waiting for the test results - you are incredible.

Kathy McPherson