Whew! That took all day. But in the end, it was a good day. We got there about 30 minutes early, parked, went upstairs and checked in. The building itself is beautiful, located at the south end of Lake Union. The waiting rooms are all on the inside curve of the building with floor to ceiling wall of windows overlooking the lake. There are lots of comfortable chairs and even leather recliners. We went past the gift shop, full of really cool cards and trinkets and gifts, stopping in to pass some time since we were still early for the appointment. We met some very nice people who were perusing the wares, and I fell into chat with a fellow dog lover.
Upstairs we went to the fourth floor, to the appointment with Dr. Oehler. We didn't have too long to wait, and they called us back to a tiny tiny little exam room. In walked Dr. Dim, Dr. Oehler's fellow. He explained that we would be meeting with him to go over my history and chart and getting some basic information about the different drugs available. He was nice, but clearly not that comfortable with how to disseminate the information to us. He seemed surprised that I understood the disease as well as I did. I wanted to know exactly how the drugs worked. He looked puzzled at how to tell me, so I helped him out by laying out what I knew, that my number 9 chromosome splits and a piece of my number 22 chromosome splits and they swap (trans-locate). But this was about all I understood. He then explained that the translocation caused a new protein to be formed, the bcr-abl protein, this is a problem because your cell's receptors take this new protein and it causes them to create and create and create immature white blood cells that cannot mature properly.
The drugs target the protein and block the cell's receptors from accepting the protein. Simple right?
Dr. Dim was pretty impressed that I caught all that. But I had been researching and reading and re-reading everything I could get my hands on, and everything MultiCare Cancer Center had given me. Little did he know, I am THE RESEARCH QUEEN!
So then we waited for Dr. Oehler to come in. She was wonderful. Very focused and very knowledgeable. The only thing that really threw me was that they seemed to not be sure who would be my oncologist, her or Dr. Inoue (Tacoma's oncologist). Now, don't get me wrong, I adore Dr. Inoue, he had the best bedside manner of all of them and he really made me feel comfortable. But Dr. Oehler is THE cml specialist, of the world.....
Easy decision for me. So we are going with Dr. Oehler and Tasigna as my drug until I reach a certain level of stabilization, then Dr. Inoue can take over. I also offered to be part of any drug trials that Dr. Oehler needed me to. She was happy to see a patient who had just been diagnosed, she mostly sees patients who are not doing well, she is their last resort. Which was nice for me too.
Then, because Tasigna can cause heart failure, I got an EKG, the first of many. Then it was off to the lab for blood work.
I am getting so good at blood work. I asked the nice man if he was going to be my vampire for today. After a second, he realized that that was a joke and laughed. I then introduced him to my bad veins, laid them out for him, told him that it works best in my right arm, my veins roll and collapse, and if he wanted to be successful, he should use a pediatric butterfly and then use a syringe to pull the blood out instead of putting the vials up to the needle. Poof! First try was golden. I love it when they listen!
JR went up to the pharmacy to get the Tasigna, but came back empty handed. They need to order the drug. Even THEY don't carry it. It is a rather special one I guess.
So we were finally done, and hungry. So we went to El Gaucho. Possibly the best steakhouse in Seattle, and definitely one of the most expensive. But JR said not to worry, that we needed a treat, so order what I wanted.
I wanted a nice big drink! We were so early at the restaurant that they weren't really opened yet, but the bartender greeted us and got us started. So I ordered a new kind of lemon drop made with honey. Yum!
Then they seated us in one of the wonderful booths on the upper level. If you haven't been to El Gaucho, allow me to introduce you. You walk in, and everything is painted black, the lights are dimmed, the kitchen is tiny and open to the room so you can watch the chefs. There are three wait staff for every table. They take amazing care of you. And our waitress tonight was so sweet, we started talking and it came up that we had had a hard day, and then why it was a hard day. Poor thing just looked struck at the word leukemia, but I quickly told it was ok, that if you were going to get leukemia, this was the very one to get, there were targeted drugs for me to take, and it was super lucky that we lived within 30 miles of the world center for my rare disease. After that she was just fine and chatted and we just had a great time talking about our dogs and camping.
We ordered a ton of food, JR started with French Onion Soup, I had the Tuna Tartaretartare was yummy, and then they brought the steaks, and a huge lobster tail that they said they thought we needed! We ate and ate and ate. It was all so yummy! Not a smidgen of room for dessert at all, although at El Gaucho they always bring over a huge fruit and cheese plate to end your meal. We forgot that, and were only able to stuff down two dates, one grape and a tiny piece of Gorgonzola.
And then they brought the bill and said that dinner was on the house..........CAN YOU BELIEVE IT? For the first time all day I burst into tears. I cannot believe how wonderful people are. Every last person I have talked to about this has been wonderful. Even creditors that I have had to call and tell them that I am not sure how they will get paid, have turned human and each of them has told me not to worry, that it is only money, to take care of myself, and that they would put a note in my file, and even though they may need to keep calling, they won't call for two weeks, and I should just let them know what it going on and they will work something out.
I hugged the waitress, and even the manager came over and gave us his card, telling us to let them know what they can do to help.
I love this life of mine. And people are amazing. You just have to let them be amazing.
More later........
Man! clap clap clap clap clap.
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