Days without incident : 50

So far so good. Had the latest IvIg infusion on Thursday. It went well. They have it down to about 2hrs now. I have a few more scheduled and then we'll see what happens. When I started my immunoglobulin level was 0. After the first one it went to .5. So now, after 3 I'm at 2.5. Once we get to 5 and it holds there, we will start to spread the infusions further. Going from every 4 weeks to 6 then 8 until I'm off. Once that happens, my doctor doesn't really know the next course as I'm not allowed to get Rituximab (part of the chemo) any more as it killed off way too many good cells......Back to the drawing board.
Had an appointment with my gastrointestinal doctor 3 weeks ago but they canceled saying the treatment my oncologist is giving me is good and their is nothing else they can do for me. WHAT!!!????
I told my oncologist about it and told him I was still having problems in my gut. He was perplexed and was on the phone to GI within seconds and had me booked in for a after hours visit Thursday.
So, seems they can do more for me. I'm on some steroid for the bowels. 8 pills a day. Hope it helps.

blog soon,

vic

on the shuttle to the clinic

Days without incident : 15

   Nothing has happened since the last post but I felt it was necessary to thank a few people for all their support.
Thank you very much to Efie and the staff at the cafe for all their support and kindness during the fundraiser. A big thank you to all the friends and family that came out to support the event. We don't know where we would be with out you. It was a very special night. We (I) were overwhelmed by all the familiar faces and ones whom we haven't seen in a while, it was very touching. These are the things that keep us going when we have bad days.
Also a big thank you to all the staff at DCAS for their never-ending kindness in so many different ways. Your support for Colleen and our family is unmatched.
We have been blessed with a wonderful circle of friends and family who's endless kindness has kept us going during this difficult time. Saying thank you just doesn't seem enough. Just so you know we think about you every day and thank god for putting you in our lives.

I love you Colleen.

Blog soon,

vic

So.
Had my meeting with Internal Meds 2 weeks ago. Not much to say. They didn't take blood, not sure why. Asked how I was feeling & stuff. They aren't really going to do anything except watch me. If I experience anything out of the ordinary, go see a Dr. or go to emerg.
I still had the picc line in until after my IVIG infusion Thursday. Everything went well. Not as nauseous as last time. I did find out that I will be having a few more IVIG infusions over the next little while. It will all depend on how it reacts with my body. Have 2 more planned for sure. Chemo maintenance is still on hold until the IVIG is done.

Picc line removed. Red line indicates the actual length

blog soon,

vic

Although I've been told it was a fashion statement and bad ass. I've finally parted with my beloved satchel. I was unhooked from my portable IV yesterday. I still have the picc line in and will keep it for a while yet.
Freedom is here!!! No more getting hooked on bedposts or chairs. No more closing it in car doors. And no more late night gasps for air with accidental tube strangulation. FREE!!!!!!

Meet with Internal Meds on Friday.

Blog soon,

vic

Happy Star Wars Day!


May the 4th be with you.

So, had the IvIg blood infusion on Thursday. It wasn't as bad as I thought. I had a little bit of a headache but that might have been more from worrying about it. I got my special chair in the blue section # 53. would have been cool to get #52, Ben's hockey jersey #. Totally not what I expected. Didn't look like blood in any way. They started around 10am and I was done by about 2pm. Everything went well as they gradually increased the volume. The nurse's were really happy to use the picc line. I was able to get my dose of meds at the same time as the infusion. Cool.
Have another one scheduled for the 17th of May. I should loose the fanny pack (even though it's bad ass) in less than 3 weeks. I'm sure I will see my internal meds doctor before my next IvIg, to see if all is good on that front.
blog soon,
vic

looks like soda water not blood

fake smile, cause i'm freaked!!!!