Dorothy in Cancerland

The walkway in Cancerland is a virtual information yellow brick road. Like Dorothy, you have to walk a weird and winding path that leads to either paradise where Mom has no cancer and we all live happily ever after, or that other dark and gloomy place that we won't discuss just yet. Unlike Dorothy, you don't get a beautiful, nicely laid out, neatly manicured path. You get twists and turns with thorns that reach out and grab you. Your path is laid with land mines of emotional outbursts and spooky trees with their spindly branches poking you, making you doubt your every thought, emotion and action. The rustling leaves seem to be whispering questions meant to drive you insane. 'Am I taking the best care of her?' 'Am I making the right choices?' 'Am I doing what I can to keep my family informed?' 'Am I putting to much on my husband?' 'Am I asking too much of my friends?' You don't get pretty ruby slippers, either. You get walking shoes. To walk the million miles you will walk between the doctor's offices, the hospital visits and to the pharmacy. With every step you take you are bombarded with information. Within 4 months you learn about myelodysplastic syndrome (MDS), refractory anemia with excess blasts (RAEB). Yeah, I know. A mouthful. And you can't just memorize the words like you used to do in English class. You have to know what they mean and how they fit your Mom, because you will have to explain it over and over and over and over and OVER. And then a few more times for the people that just can't process it the first time. Ok, so first MDS. Myelodysplastic syndromes are bone marrow stem cell disorders that result in chaotic and ineffective blood production brought on by irreversible multiple quality defects in blood forming cells. Refractory means that ordinary types of treatment aren't going to work. She just has to have the SPECIAL treatment. (Can you smell the sarcasm?) Anemia means that the oxygen carrying part of her blood are just a bunch of wimps. Can't get the job done. Excess Blasts are increased numbers of immature blood cells that are supposed to grow up and become white or red blood cells or platelets. But all they want to do is stick around and party. MDS is diagnosed by at least 5 to 20% of these party loving weirdos in the bone marrow. 15% of the blood cells in Mom's bone marrow are these immature freaks. MDS is also diagnosed by 2 cytopenias, which are low blood counts of at least 2 types of blood cells. Mom has low red blood cells (RBC), white blood cells (WBC) and platelets (PLT). Around 30% of people with MDS have RAEB. About 1/3 of people with MDS progress to acute myeloid leukemia (AML) within months to years. AML is yep, you got it, LEUKEMIA, which is a whole different kind of hell, oops, I mean cancer. You also have to learn about whatever cancer drug they want to pump into her. Not only the drug, but the side effects. You really want to learn about those side effects, because they have been known to sneak up on a person and beat them down and just run away. tra la la la. Like they were never there in the first place. Like they never made you cry when you had to explain, for the fifth time in 1 hour, that ER's don't work on a first come, first serve basis. That it goes in order of severity, it doesn't matter that she was there before the kid who puked or the dude that had something sticking out of his hand. Like she never made you feel bad when you didn't want to drive back to the hospital to bring her the lidocaine cream she had at home. She is in a fricking hospital, they have some there, for sure. Ok, so maybe that one wasn't one of her side effects. Just kinda slipped in there. Don't know where it came from, just kinda popped up. Umm..yeah..anyway...The path of knowledge isn't always pleasant, but it has its occasional peaks. For instance, when your favorite (and only) uncle calls to say thank you for explaining, he wouldn't understand what his sister is going through if you hadn't translated it for him. Those moments are the peaks, when you realize that all the work you did helped someone understand more, which in turn makes them understand her more, which makes it easier for her. And since that is all you are trying to do, you can go to bed at night and sleep, knowing you helped.