Carol and I spent the day at a conference, put on by the AA-MDS International Foundation, called “Living with Aplastic Anemia, MDS, or PNH”. Since I have two of those three, it applies to us. Except for the “or”.
The most interesting thing was meeting a room full of people from all over the Midwest who have the disease(s) I have. These cancers are so uncommon that you never meet anyone else who has them, even when you go to the Cancer Center for treatment. People with AA are truly one in a million. MDS is rare, too, but only something like 50 or 100 in a million. People who have an overlap of both of them (me) must be exceedingly rare. Maybe … I’m the only one. But I doubt that.
Since these cancers are endured by small populations they don’t get the notoriety of cancers that ravage larger populations. They also don’t get the funding and the new drug development, as we can all understand. But we have cancer just the same, even though other people in our lives mostly just shrug it off as something that they don’t understand and which doesn’t seem to be all that devastating.
I can tell you from personal experience, though, that a death sentence is a death sentence, even if it’s by designer electric chair.
Anyway, it was a good conference and a good time. I had joked ahead of time about the quality of the food, but even that was more than good. No complaints to register.
We learned a lot about bone marrow and stem cells and how cells are made and where they can go wrong. We learned about what might be done to help and that sometimes it works and sometimes it doesn’t, though the whys are less common than the whats.
We learned that there are no hard and fast rules about what will happen when. We learned that these diseases are rare enough to not have generated a lot of data. Doctors know more than they used to, but still not much.
We learned about possible progression of the disease into acute leukemia and what that might mean. We learned about the upsides and downsides of bone marrow (stem cell) transplants.
Our knowledge level was pushed forward a bit. But the real value was seeing and meeting the people. We met people who have been living with these diseases for many years, and others who were diagnosed very recently. They are all brave. We met spouses and family members who have been taking care of their loved ones for years and others who are trying to learn how to do it.
It made me cry to listen to people talk about what they are trying to do despite their disease. It made me laugh to see them living normal lives and being strong in the harsh wind. It made me quietly pray for them as they go down the road ahead.
Good day. Good people. Good food. We even celebrated with sparkling cider. Good party.