So much for unpacking my CLL Conference for you over this past week. Believe me, if I could have dragged myself out of bed to write I would have, but whatever fever/infection is hanging around has left me really tired this week.

I mentioned last time that Jeff, Nathan and I went down to PMH on Wednesday to visit Dr. Crump and he’s arranged for me to see an Infectious Disease doctor on Monday at 1:00. I think we are all eager to get to the bottom of these unexplained fevers and the angry rash that appears when new antibiotics are introduced. Let me tell you, no one is thrilled that my immune compromised body is reacting like this to new medications. We don’t think that this is an allergic reaction, but it is most certainly a drug reaction. I should mention that once I stopped taking last week’s prescription of Cipro the “angriness” of the rash has settled down, it is less raised than before and it is certainly going away. That said, there’s still a long way to go.

Okay, let me talk a bit about the weekend. Jeff and I arrived on Friday night and skipped out of a session in favour of a date night on the “strip”. It was so nice to be away and not have to worry about getting back in time to pick up Nathan. Big thanks to our friends for agreeing to a two night sleep over! The weekend would have been more difficult without your help! We LOVE you guys. And, while this has nothing to do with the conference, the bed at the hotel was so comfy it was like sleeping on clouds (although I realize that you can’t really sleep on clouds…)

Meals were included for us during the conference and I will make a shout out to the Sheraton Fallsview for their delicious Brunch in their onsite restaurant A Cut Above Steakhouse. Lunch was served buffet style outside our meeting room and it was good too (can you say Chocolate Cheesecake and Chocolate Mousse… mmm…).

Okay, so you’re probably  more interested in the content of the conference than the food of the conference. We were too. As I mentioned before, I did have some expectations regarding the weekend. I wanted to learn and understand more about CLL from a group of doctors and specialists and I wanted to meet other people like me, people who have CLL, have been treated, have made difficult decisions and have “been there”.

First, the scientific stuff. Whoa. I must admit that my Grade 10 High School Science class did not prepare me for the information that was presented on Saturday. That’s not to say that the day was a waste. There was some information that made sense to me, sparked Jeff and I to talk about some treatment options that we would like to learn more about and was really practical to understand. I am certainly glad though that I had a knitting project with me to keep my hands and my mind busy as all of this technical stuff was going on around me. As a result, I’ve got my newest pair of hand knit socks that will remind me of the conference (and, yes, I know that you can buy socks that are already made up for you at Walmart for pretty cheap. Thanks Dad!)

Second, the social stuff. It’s no surprise that this is the area that was of the most benefit to me. I met two women from Toronto, both who are in the Watch and Wait stage of CLL. What a frustrating (and exciting) place to be! I mean, they have CLL, but it’s to their advantage to DO NOTHING about it. Isn’t that so counter intuitive to everything you’ve ever heard and known about cancer? Yet this is where so many people find themselves when they are first diagnosed. I wasn’t so lucky, but you’ll know by now that when it comes to CLL (and perhaps most things in my life) I walk to the beat of my own drum.

I also met another young couple. Can you imagine my surprise when I met Jeff from D.C. who was diagnosed when he was 28? It was great to sit and talk with him and his wife Jill about some of the issues facing us young CLLer’s. Especially after most of the language of the conference focused on the typical “older generation” that is usually affected by this disease. More on that in another post, but I must admit I was a bit riled up over the obvious exclusion of us young folks. And you won’t be surprised that I made my way up to the microphone during the question and answer period to talk about it. I was careful with my words (I’ve got the bite marks in my tongue to prove it!) and I’m not ready to drop the issue yet. But again, more about that later.

I must be going for tonight, but I do want to leave you with a website if you’re interested. My favourite session of all was by a woman who is the Co-Founder, and Chief Science Writer for CLL Topics, Chaya Venkat. Her message, as a CLL Advocate was nothing short of brilliant. She recently lost her husband to CLL and shares that story here in Harvey’s Journal. It’s not always easy reading. I did skip some of the technical stuff, but she writes honestly about their story, doesn’t sugar coat anything. It is a beautiful tribute to his life and his dedication to CLL Advocacy.

More later.

H.

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