Sunday, February 28, 2016

Eddie Would Go.

If you have ever been to Hawaii, you've probably seen bumpah stickahs that say- Eddie Would Go.

Eddie Aikau was a Hawaiian surfer, lifeguard, hero and legend. He won the Duke's Invitational Surfing championship in 1977. He was a well known lifeguard in Waimea Bay, where no lives were lost while he was on duty and he braved up to 30 foot waves because he could. In 1978, he and a crew of the Polynesian Voyaging Society were on a 30 day recreation of Hawaiian migration between Hawaii and Tahiti. The canoe developed a leak and ended up capsizing south of Molokai. There was much debate over waiting it out or going for help. Eddie grabbed his surfboard and a life vest and went for help. He was never seen again. The crew was eventually rescued by the Coast Guard.

In 1985, Quicksilver began a surfing competition on the North Shore to honor Eddie.  The main condition is that the waves must be over 20 feet high. When no one else would dare, Eddie would Go.  The conditions of these big swells are particularly dangerous and only 8 Eddie Contests have been held. The last one was in 2009.

All day I've heard- the last Eddie was so long ago. It was in 2009. And for the life of me I cannot remember that Eddie. And let me tell you, it is a BIG deal on the islands. It is a contest of Olympic proportions here. I am not a surfer, the kids dabble because when in Hawaii and young, you give it a go. I have a profound respect for Mother Ocean. She is vast and she is strong. She is unpredictable and she is deep.  And it got me thinking- what was I doing 6 years ago that was so much more important than having any idea a major event was occurring?

We were a few months out of Lily's chemo. Her hair was growing back and we were trying to find new normal, again. And I got teary thinking about how LONG ago that was and how uncertain and afraid I was for Lily.  How afraid I was of losing her. How helpless I felt when she suffered and there was nothing I could do. Those times were relatively quiet compared to the previous year but they were indescribably difficult. It is something that is tough to explain to someone unless they have lived through crisis. Anyone who has, nods quietly with understanding. There we were, things were easy compared to the constant treatments and overnight feeds and ER visits and hospitalizations and scans- but somehow in the quiet the stress of the past crashes loudly around you. I don't remember that Eddie, but I remember how Lily's hair had the most amazing platinum blonde tips and she would have trouble sleeping and we would find her next to my bed or by the door. Bella would get lonely and we would find her with Kiera.  And part of you wants to live every day like it's the last and part of you realizes you have to maybe consider living today like it's the first of many to come.

That is the perspective living with chronic conditions gives you. Like the gigantic waves- sometimes riding the wave is the easy part compared to choppy white waters you have to navigate when it crashes. And then another wave crashes and holds you down. And so much of it is just luck and what you make of the breaks you are given.  When they discussed the big waves for the very first event- were they big enough? Were they too big? The statement was born- Eddie Would Go.

I've noticed this year the overriding theme of safety. Surfers are wearing vests, they are encouraged to drop everything and help anyone who might be in trouble. And I can't help but think- shit these dudes are psycho. They willingly look forward to going out there and getting pummeled. For what? A title? It's more than that and I have to respect the spirit of the Eddie. It is insanely dangerous and that is acknowledged.  But there is an overriding respect of nature and it's power, the mana of the ocean and it's waves. That's what it's like LIVING with a chronic illness.

Phil had last Monday off after working all weekend. There was buzz about the Eddie later that week. The waves were big enough- Let's go see them! Of course the guy never gets to chill and here I am dragging him to the North Shore to see big waves- risking traffic and flooding. But we got up there- and it is humbling- the strength and sheer sizes of the waves. Feeling the ground rumble. In 10 years we've been here, I've never seen waves that big and always wanted to. The waves were crashing over the road, leaving trails of mud and rocks. We decided to head back before it got too crazy busy.

I hear more often than I would like- people tell me they don't know how I do it. Once, Phil was told by another husband of a mutant that he would kill himself if his wife and kids all had LFS. I think that impacted us both dramatically. Why do we do it? I guess we have a choice- there's always a choice, some choices just suck more than others. We CHOSE to have children knowing that there might be potential hereditary cancer time bombs waiting in the wings. But mostly I'm astonished. We are choosing to live, despite knowing we are paddling out to monumental waves. Hell we've been riding waves for our entire lives. That is the nature of the ocean. We know we will get knocked down. We also know we might catch one. Or a lot. Or at least have the time of our lives or die trying to live. If that is not what life is about - then I don't know what is. Inspiring others by just doing what you love, that somehow it is perceived as bravery or strength. There could be worse things to be known for.

My waves are different than yours, which are different than someone else's. Choose your wave. Then choose to Go.  Team Mallory Would Go.

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!

Lily Kay Monkey

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