Tuesday, September 30, 2008

i know *I* wouldn't want your blood...

Phil and I were talking to our friend the other night. Friend had just given blood and Phil lightheartedly mused, "I wonder if I can still give blood?" Friend quickly surmises, "Ummmmmm... I don't think so. No."

It doesn't sound so funny as I'm typing, but trust me, it was hilarious. The 3 of us laughed until our faces hurt, and in that moment much power was taken away from MM.

I see more laughter in our future.

Saturday, September 27, 2008

multiple myeloma conference

Phil went to a MM conference today (thanks, Barb). He said it was enlightening and brought a sense of reality to our situation. He asked one of the doctors from Karmanos about the age of his patients... the doctor said his youngest MM patient is in his mid-30s, the second youngest is 47 and the rest are in their 50s and up. So, as we pretty much already knew, we really are the rare birds in the myeloma landscape.

Phil was also able to get some good information and stats on stem cell transplants which we will continue to mull over. Even though we're not at that point yet the likelihood is that we will have to make these decisions in the near-ish future and we want to be as prepared as possible when that time comes.

I've been following several blogs written by people who have MM and I decided to add those links to this page. However, I'm not sure about blog etiquette so if you are the writer of one of these blogs and you would prefer not to have a link on my page please email me and I'll take it down.

Saturday, September 6, 2008

a non-update...

Just wanted to post a non-update.

We will not have any new information until Phil's next appointment. That's when they do more blood work and other fun tests to see what his numbers are doing. Even at that point we won't have as much information as we will at the February appointment since levels can vary quite a bit even day to day. 

It sounds sick but we're actually looking forward to these doctor visits. We feel like we're getting a grip on the reality of the situation, even though we were saying last night that when we talk about it, it's as though we're sitting outside of ourselves- like it's happening to someone else.

I think this is the craziest and most frustrating thing about "smoldering" multiple myeloma... they can't do anything about it until it becomes problematic. We liken it to driving around with your "check engine soon" light on but being unable to fix whatever's wrong. At any rate, that's what's happening (or not happening) around here on the MM front.

On another note, we're going to the beach with my parents and sister next week for ten days of oceanfront R&R. Looking forward to the respite. Not looking forward to the drive with the Littles... but it will be worth it to have some time away from home to plan and process, but mostly to just BE.