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.

Christmas in Cancerland

The next ride in the park is the CHRISTMAS EMOTIONAL OVERLOAD slingshot. You know, the one where a swing is attached to bungy cords and two idiots sit in the swing and then they are launched straight up at a zillion miles an hour only to reach the end of the bungy cords and come zinging back down to earth! That's the ride I'm on now and I hope I'm in the fall back down to earth, cuz that would mean the ride would be almost over. Until the next time my idiot self sits down in the swing.

It all started with that friggin' Christmas song. I had never heard it before and it crushed me. Whoever wrote it is a JERK!! Christmas songs are supposed to be joyous and happy. Jerk. It was about a little kid trying to buy his mommy some shoes and he had to hurry, because it might be her last Christmas. Then I thought, what if its my mommy's last Christmas? The water works started at my desk at work. Luckily, I made it to the bathroom before anyone ever saw me. I thought I was ready for her death, but then this hits me. Which made me think that I had been being selfish with my time and not tending to her emotional needs. So, I got into the swing of Christmas. We have spent every night this week making cookies, decorating the tree, wrapping presents, the whole nine yards. And having a great time!! We went to Jessica's Christmas Cantata, too! Then we went out to lunch with the girls from work. I think that was the point in the ride where the idiots have reached the end of the bungy cords and think, 'Oh shit, we're FALLING!' She tells me all the time that she is tired of talking about it, but whenever we are with somebody, she takes over the conversation and talks about herself. I know, really freakin' stupid small crap to get pissy about, but that's me. I can take on the weight of the world, but the small things break me everytime. I can understand her telling the girls from work, because she used to work with them (I took over her job). But when she went to tell the waitress, I got quiet and pissy. I took her home and then went back to work. When I got home again, I started making the sides for Christmas dinner and she watched me. Then I did the first round of dishes and she watched me. She sits and watches me all the time. I don't like being watched. I never really have, unless I was on a stage and pretending I was someone else. I don't say anything when she does it, because I know that she is alone all day and just wants the company, but AUGH!! It freakin' bothers me. I was well on my way to being annoyed for the rest of the night until I got to open a package from my sister-friend, Edel.

I thought the package was for the whole family and that is why we were going to open that one. Turns out, it was just for me. She makes the most exquisite dolls as a hobby and she made me a red-haired beach Santa. His robes are decorated with shells and seaweed and he has the coolest red curly hair and a huge shell for a hat! He rocks. I started thinking about how much time she spent on him, just for me. Completely changed my night!!

I got up this morning and read my other sister-friend, Becky's blog. She posted a saying that was on the front of someones memory book that said, 'You alone give meaning to our being together and our being apart.' This made me think of Mom. Without her, I would not be. Without her, I would not have any of my favorite people. If she hadn't kicked me out of Michigan, I would never have gotten close to Jay and Becky, which in turn made me get closer to Shawna, Lance and Edel. I would never have followed Jay and Becky to Florida, which means I would never have met Pavel, Jessica, Geena and Tim. Without Mom, I would not have Shawna, Lance and Jay. Without them, I would not have Scott, Edel, Becky and all my nieces and nephews who bring me constant joy. So this Christmas, I am thankful for my mother and for my family and for my friends. Words can't say how truly phenominal it is to have y'all in my life. Thanks, man. I truly think this ride is over and if this is how some of the rides end here in Cancerland, sign me up for the next adventure.

Cancerland

1. Welcome to Cancerland, a thrilling adventure park that no one really wants to go to. The rides are thrilling. The first one is DIAGNOSIS!! A rip roaring 3-D rocket ship that consists of 2 visits to the hospital and BAM! Your Mom has cancer and is going to die. The next one is MOVING DAY!! The one you swore would never happen!! Your mother and ALL her stuff move to your home. The next one is my favorite!! SECOND OPINION!! They first painful bone marrow biopsy wasn't done very well, so you have to sit with your scared Mother while she waits to have another one done. And then they tell her that she can't be put under because she ate that day. That ride lets out, two weeks later, at BIOPSY RESULTS!! This one is great! They tell you that it is worse than they thought, but....there is HOPE!! With tons of drugs and a transplant, she could be cancer free!! Next and surprisingly smoothest ride was CHEMO STARTS! Kind of nice, oddly enough. No major side effects, little nausea and fatigue, but otherwise, okay. Maybe a calm before the storm kind of thing?
2. We are hiring!! A qualified applicant must have the following: shoulders of steel (all burdens will be placed here), shoulders must also be padded (will be cried upon often), lots of patience (it will be tried anytime, anywhere), a strong stomach (will have to watch as Mom is poked and prodded repeatedly), a quick mind (will be thrown reams of information and great responsibility at the same time), be greatly organized (will be running her life as well as your own) and a great sense of humor (otherwise you will go stark raving mad, like bonkers, like padded room insane).
3. The hours are long and the pay sucks, but guess what? You still get to go home after being in the doctors office for hours and do the dishes and make dinner. Don't forget that laundry still has to be done, Christmas is coming, too. And you don't suddenly get extra energy or extra hands to help. You do get to decorate the Christmas tree with Mom and you get to see how truly wonderful your husband is. If your lucky, like me, you get to see just how much love there is in one family. You get to see your Mother giggle like a little girl over the crazy things your dogs do. And if you are very, very lucky, you get to see life through new eyes and see things that you never really did before.