Friday, February 12, 2016

My funny Valentines Update

This will be a "quick" update.

Several weeks ago I had my brain MRI to monitor boobie the tumor in my cerebellum. She had grown a few millimeters and we have to keep an eye on her. So as Tripler likes to do at times- they referred me out for an MRI. They get swamped  and sometimes they just say we aren't scanning any more dependents. Yes it's annoying, but there are perks. The perks are NOT getting results- that is where the effort comes in. It's a trade off- scheduling at Tripler takes forever- but the results are right there in the system. Every time I've gone somewhere else- we have to hunt down the results. Mostly I'm just hoping since I don't have symptoms and no one called me to schedule new appointments we are still in the waiting and watching holding pattern.

This time we went to the hospital just down the road- same place I had my radiation consults. It's very nice, the people are nice, the scheduling was easy. I got to listen to music. The waiting area was comfy. Since Monday is a holiday- I will have my oncology appointment on Tuesday with chemo. My platelets are dropping and not rebounding. They are hovering just below the low limit the day of chemo. It's not low enough to transfuse but it does explain why I bruise easier and the bloody noses. As a result I try to take better care- avoid tackle football, that kind of thing. When it gets to a point where they dip lower, we will take a break from chemo to see if they rebound. The problem here is that break will give the cancer a chance to grow. This is the game we've been playing for 2 years though- balancing quality of life with keeping cancer at bay.

The other step is to add an aromatase inhibitor back in. Since I had my ovaries out- my body is not producing estrogen, but the body is amazing and has some back up systems- aromatase is an enzyme that can convert cholesterols into estrogen. By inhibiting it- you eliminate estrogen that feeds estrogen positive cancers which mine are. I tried Arimidex for a few months and struggled with aches, insomnia and anxiety. Bad anxiety. It was not good. So we took a break. We are now trying Aromasin- slightly different molecule so it should have a different side effect profile. So far it does. Day 3 my knees hurt so bad I could barely get up the stairs. I would pace around but they felt like they were going to give out. Icing and slathering with menthol became a full time job. The after school driving was brutal. I try to get out at every stop and walk around. it isn't fun. This will be a point of discussion Tuesday. As far as side effects go- its very minor. But it stinks. So there will be a trial period and if it doesn't get better-well we will have to talk about it. I know my onc is worried I will have to take a chemo break because of platelets and wants me on something. I've been chatting with some mets sisters online and like any of the meds- sometimes it gets better, sometimes worse- you gotta just wait n see.

Now the kiddos! Busy Busy Busy! Never a dull moment. Phillip is wrestling and doing well there- his eye healed nicely. He got a guitar for Christmas and is teaching himself to play. His grades are very good and we are still working towards getting his driver's license. He is dating a very sweet girl- who is also very busy but I really enjoy her when we do get to see her. I think all relationships exist via text these days which is strange to me- so we try to get the kids to engage in person more. As a result we actually encouraged him to take her to Junior Prom. A good lesson in relationships- do you want to go? Not really. Does she want to go? Yes, she's on council- she's planning it. Well then you better get yourself over to the office and get tickets- which aren't called tickets here, they are called bids. I have no idea why. Phillip is very independent and I really appreciate it, but I miss him. A lot. I am looking forward to wrestling being over and him being around more. He and Kiera get along really well and goof off which is fun to see.

Kiera. Oh my little mini me. I love her to death. Phil and I got to get away for the weekend for our anniversary and she asked my sister in law to please ask the girls not to mess up the house because she spent all afternoon cleaning. She also stripped our bed and washed the sheets for the sitter. She is doing well in school and unfortunately mostly learning to deal with persnickety teachers. She still takes voice and is upping her ballet to 3 times a week. We are on hiatus from performing. She still loves to perform and act but is learning that the politics of theater are not necessarily in line with who we are as people. Ah life. It stinks. Tough lessons. But you can not go wrong with being true to who you are and I am glad she took a break before it completely zapped her love of theater. I am hopeful we will find the right fit for her and our crazy circumstances. Until then we nurture her and learn and grow.

Lily Kayda . Oh Lily. She's smart and caring. She is still doing voice and her instructor has her doing Phantom and it gives me chills for so may reasons. Mostly its like a little mini concert- his voice is amazing and I can not believe the high notes that Lily hits. She is also in basketball at school and she brings her ball to the park when bella has soccer and shoots baskets. Definitely one of those times I wish my body felt better- it would be nice to go shoot baskets with her. The big news with Lily is that she insisted on doing St. Baldrick's again this year. She will be shaving her head in april to raise money for childhood cancer research. I asked her -can we just do lemonade stands and send money in- nope she wants to shave her head. Why? because I can and it raises a lot of money for kids with cancer. I felt icky when I had cancer and I don't want other kids to feel that way. Well there you go. I'll blog a link in the next few weeks in case anyone wants to donate. I know we ask for a lot of donations for different causes.

Bella Boo. My little red headed spit fire. She likes to make macaroni and cheese. which is helpful. but requires supervision. As does just about anything bella takes on. If only we could get her to use her powers for good. But then I remember saying that about Kiera. Bella tolerates school and piano and then Kiera asked her to show her how to play frozen on the piano and I've seen a shift. She will practice more now. She loves soccer and specifically being goalie. While the girls are at voice lessons we go to the soccer complex and I kick balls at her and she catches them.  We just finished up her Valentines for school- they had to be star wars and so we came up with a fun light saber emoji card where the light saber is a pixie stick.

Phil and I celebrated our 17th anniversary last weekend. So grateful to my sister in law, brother in law and friend who managed the kids for us for 2 days. We needed time away. It really helped morale. We also got to visit with some really great friends from Seattle- which did my soul good. All kinds of good therapy on the Big Island- whales, sunsets, sunrises, friends, good food. Mostly getting to be with my best friend. All right gotta get the kids off to school! I'll add pictures later and hopefully get around to finishing the 3 blogs that are staring at me!

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)