stupid cancer

hi. my name is latu and i'm an obsesser. i obsess about basically everything, but at any given time, i have a huge obsession that occupies most of my time. depending on the time, it's been different things. this summer, i obsessed about my school schedule for the fall. i ended up making over 2,000 changes to my schedule. and i only knew that because the system locked me out as i was trying to make even more. i had to go into school and talk to the director of something (and by talking to her, have to deal with her biotch of a secretary, who was wearing a waaaay too short skirt...) and find out that i broke the system by making over 2,000 changes in a single semester... i was the second person to ever do it. i felt awesome :)

my current obsession is brain cancer. i constantly troll through blogs and websites, looking for brain cancer stories. i have subscribed to a brain cancer mailing list and get updates on various people and their brain tumors. one thing that has amazed me since joining is the sheer amount of people who have been absolutely crippled by brain cancer. i read heartbreaking stories (and even more heartbreaking obituaries) about people who had their first brain tumors years and years ago or people newly diagnosed. the most harrowing was a girl my own age, who had medulloblastoma-- the same type of cancer as masey--when she was 3. back then, she was an absolute miracle because she made it out of surgery and was studied by doctors around the country because she made it past the 5 year mark from diagnosis.

as a result of her treatments, this girl was severely mentally retarded, paralyzed from the waist down and suffered many health problems including heart failure, seizures, the loss of both kidneys and a subsequent transplant, and a liver transplant, to name a few. you see, back when she received the ground-breaking treatment that saved her life, doctors did not really understand the late-effects of large amounts of radiation to the brain of a toddler. they did not understand that in order to avoid damage to organs like the kidneys and liver, chemotherapies could not be given alone. they need adjuvants to off-set some of the effects. in some cases they just did not know that besides curing cancer, radiation and chemotherapy causes cancer.

this girl was a miracle. she survived the draconian cancer practices back then, but she most definitely paid a price for that survival. she died peacefully in her sleep last month after being diagnosed with acute myelogenous leukemia (AML) a secondary cancer that came as the result of treatment of her original brain cancer. the world of childhood cancer treatments have made leaps and bounds since this girl underwent her first treatment, but it still has leaps and bounds to go.

since masey started his cancer journey, i have been humbled and so grateful for the faceless masses who went before. for the children who found out the hard way that radiation to the brain can cause mental retardation. for the children who have lost kidneys because cysplatin was the only option to kill their brain tumors. for the children who have gotten aml from cytoxan. for the children who suffered the agony of a brain tumors before we knew that steroids would reduce the swelling and pain. for all the children who have gone before. these children have been a constant thought in my mind. without knowing, without consenting, their experiences have silently effected masey's experience.

i am constantly grateful for those children. after hearing the girl my age's experience, the silent horde of children has a face. has a story. is so much more real.

today, mason is not free from the side effects of cancer. he'll never get the hearing back he lost. he has the potential to lose more. the years to come may bring with them learning disabilities. he may never move beyond a 4 year old's mental development. we will always cringe when mri time comes around or when he throws up or gets a headache. the fear will be a constant companion. masey will never get back the childhood he's missing while he spends his days quarantined in the safety of our house or in a hospital bed. he will wear emotional scars for his whole life. a part of his personality will be forever changed. there is still the potential for heart, kidney, liver problems or secondary cancers.

but he is here. my little bestie is here. anything else that comes along for him is absolutely do-able. and i'm sure he'll do it with his same smile and carefree attitude. it's nothing compared to what he's already done.

cancer happened. cancer sucks. but our lives will go on.

my dog died

this is chiefi about a year ago. we'd had him for about 8 months and i still called him wicket (like the ewok) because i thought it was a more fitting name.

i'll spare you from seeing a picture of chiefi yesterday. it was heartbreaking. you see, chiefi got ran over by a car on state street.

i always figured people whose dogs died were just being dramatic. i've sent dogs to the pound before or given them away. it can't be that different, right? WRONG!! oh my goodness, for all of you out there who have had dogs die, i am sorry i judged you. this is one of the most sad things that has ever happened to me. i feel like a person died. like my little brother. i keep expecting to see him or hear the little jingle of his tags when he runs around the house.

chiefi and i had a love-hate relationship, and it was becoming more and more love lately. literally in the last three weeks, chiefi has been growing up. he's not as obnoxious and listens. if you opened the door a month ago, chiefi would bolt out of it like his life depended on his freedom from the house. these past few weeks, he would sit at the threshold until you called him out. he barked at everything, but was also terrified of everything. lately, he's been barking only at actual threats, and actually single-handedly chased a huge dog out of our backyard (that coco completely missed). he was always affectionate, but has been less needy lately. he really was just a cute dog.

i am convinced that chief is the reason coco is still alive today. she was getting depressed and slowing waaay down 18 months ago, before we got chief. the day we brought him home, it was like coco was a new dog. she had been given a breath of life. chief kept her young. i never imagined chief would die before coco. i envisioned us as owners of just a small dog once coco died. this is so backwards.

beyond all that, chiefi was the only thing mason wanted in the hospital. when he had just come out of two surgeries and was uber depressed, mason cried for his puppy. and the hospital obliged. we were given special permission for chiefi to come visit mason, and it made mason's whole week. he smiled for the first time in weeks and it was a turning point in his treatment. he was up and walking again and out of the hospital in amazing time.

a few weeks ago, my dad fell into the lake. chiefi played the role of lassie, freaking out until my dad was safe back on shore. chiefi was my dad's forever companion. he would cry if my dad left without him.

i guess, needless to say, chiefi will always have a soft spot in my heart. when we first got him, i was convinced i hated him because i don't like little dogs. chiefi changed my mind about little dogs forever. he was a sweet dog, and fiercely protective and loyal.

he had gone outside with coco on friday night and never came back. around 2 am, me and coco roamed a one mile circle around our house, calling for chiefi and whistling, carefully stopping to listen for the jingle of his collar. after over an hour of driving around, i gave up and came home. my hope was that someone had found him late at night and would bring him home at a normal hour. the next morning, on the way to mason's curesearch walk, my mom and sister (with mason in the car) saw him, dead on the road.

when i got the call, i did not believe it. chiefi never went farther than the next door neighbor's house. he was too scared, and would come bounding back any time coco did. i convinced vili to drive by, just so i could see for myself. what i saw was heartbreaking. i was shocked, could not believe i was really seeing our chiefi with his innards no longer in. we got a shovel and bag, and brought him home for the last time. my dad could not even talk to us, he was so upset.

i wish i could say that we had a funeral service; that we buried him in a way that signified our love for him and gratitude for his role in our lives. unfortunately, none of us could bare looking at him. burying him was just one step too far in the grief cycle. so, we put him in the garbage can and he was taken by the folks at waste management to the dump. i like to think that was better than leaving him on the road, to continue to be ran over until someone else finally got around to scraping him up and taking him to the dump. at least the ones who did the scraping loved that dog.

My Daddy

well, i know that i have posted quite a lot about him, but i saw this picture, and just had stuff to say about my daddy.

this picture makes me sad.

this is my daddy's hand. this year, he spent his winter indoors, playing cards to keep himself entertained. this past winter was not easy on his health, and it made me personally grateful that he is still in my daily, mortal life. as a child and even a youth, i took for granted the amazing man he is. he is a link to my past, a member of the oldest surviving generation of our family. all of his predecessors have preceded him in death, and he is my last link to my tongan heritage.

i remember being young and complaining when we had to go to work with my dad and brothers. i did not like getting dirty, and i for sure did not like being bossed around. working with my dad entailed both. now, as i am older and gaining more insight, i wish i had appreciated the time with my dad more.

my father is a craftsman. the product of his hands was art. these hands once created amazing work; they supported his family and taught his children the value of hard labor. they inspired others to follow in his footsteps, and made his work seem easy. my father spent his life outdoors, whether as a child fishing and working on boats, or as an adult, laboring to provide for his family. his life was lived in the fresh air, coming indoors only to sleep and sometimes eat.

now that working outdoors is no longer an option for him, he is relegated to spending his time indoors, attempting to occupy his mind. playing cards filled the void for him this winter and i am grateful for that, but i can see the desire to be outside creeping up on him.

it's coming up on summer, which for my daddy means fishing. i worry a lot about him when he goes fishing. it's rare that i can get him to bring his phone with him, and i don't like the thought of him not being able to call for help. but it's so wonderful to see him happy. he does not look or seem like such a frail old man when he's able to go out and fish. for him, it's his birthright, and life to be outdoors.

i know that the day when my daddy will leave this mortal life is approaching. i pray that when that day comes, he is able to spend it outdoors, surrounded by his family--the two great loves of his life.

Grandpa

this is my grandpa. i've posted this picture before, but i absolutely adore this picture of my grandpa. he doesn't like it; he says it makes him look like an old man, but it's the grandpa i always picture when i think of my grandpa. he's old, that's a given. it's hard to have grand kids and not be old, but he is also weathered. he's the most amazing man i've ever known. he is strong in the gospel and wise beyond his years. any time i want advice or need a sounding board, he's the guy i go to. i know the advice i get will transcend all my obsessions and drama, and be full of good old-fashioned common sense.

growing up, i spent a lot of time with my grandpa. not because i was just so pleasant to be around, but because i was constantly getting in trouble. we lived with my grandparents, and my grandma would watch us while our parents/grandpa were working. being the stubborn, bratty child i was, i clashed with my grandma quite a lot. it was a common thing that i would be sent to my grandpa's room when he got home, if only to give my sweet grandma some respite.

my siblings were terrified of being sent to grandpa. i am not sure what type of torture they thought he conducted, but i loved being sent to timeout with grandpa. my stubbornness didn't let me share their fear. i loved being sent to grandpa's room. it was the only room in the house with air conditioning, and we would usually just sit and watch cable (which was a bigger deal back then) while he took his nebulizer. i am not sure if i sometimes acted up just to get sent there on a hot day, but i think i'll plead the fifth for now...

i remember (and even if i didn't, people tell me this story all the time) the first time i stood up to my grandpa. my brother had ripped a drawing i was making, so i stole his drawing (i may have ripped it and was supposed to say sorry... one or the other!). i felt completely validated in doing so, but grandpa told me to give it back to my brother. i refused, and grandpa balked for a second. in his line of work, he was rather used to being obeyed, and used to the obedience following him home. well, it didn't that day, and we had a regular stare down; where we both refused to give in. my stubbornness finally bested his, and i went down in family legend history as the only child to ever stand up to grandpa. :)

this weathered, wise old man is the yard stick to which all men are judged in my mind. he loves his family fiercely and is the best grandpa a girl could ask for. as his birthday approaches, i am nothing but grateful that he is a part of my life. i am not sure what i'd do without him, i love him so much!

Thanks for always being there, Grandpa! I love you so much!!

Life, the Universe, and Everything

Ethnic

I think it is slightly entertaining that there is a politically correct word that people use to describe my Ethnicity. Ethnic is the go-to word when wanting to describe something from another culture. Ethnic music, ethnic food, ethnic dress. How much more vague can that phrase honestly be?

Ethnic, according to Merriam-Webster online means a group of people classified by a common background. Thus, ethnic music could mean anything from down-home country to the twangs of a didgeridoo.

Of course, there is another definition that Merriam-Webster gives for the word Ethnic --Heathen. Heathen is actually the first definition it gives. I think that it is ironic that the politically correct word most people use to describe people from another culture, first and foremost means heathen. Apparently, if you are a person of color, you must also be strange, uncivilized, and not Christian. It is politically correct, though, so no complaints, right? :)

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Fragile

I cannot type that word without imagining the father from A Christmas Story in my head "Fra-Geel-Lay" It must be Itallian! That line really makes me laugh.

I think that if I had to describe life with one word, Fragile would be pretty close to the top of my list of words. I feel like life is happy and fulfilling, but I also know it is so fragile.

It's easy to think of fragile as meaning on the verge of breaking, or easily broken, but I like to think of fragile more as something extremely precious. Something that, yes, is easily broken, but is also worth defending and protecting.

I don't remember where I was going with this anymore, but...

Life is good, and I'm a happy girl!