I don't know how to say it best, or at all. It swims around in my heart like a shark under a raging sea of tears that I've drowned in different ways in each night since Thursday, the day my dad was supposed to complete his tests for admittance into the trail, the day the told him the cancer has spread to his brain, that he can pack up and go back home. That night, I dreamt I was in a car that all of a sudden veered off of a bridge and into the water below. I have also been thrown off of a cliff with my hands tied and had a dream that was entirely underwater and swimming upwards trying to a reach a surface that wasn't there.
Sometimes I am numb, locked in my world with my children and the day-to-day, which includes my still hurting teeth and now and eviction notice for asking the landlord to make the tap water usable. I have to find a place I can afford and also probably switch schools for Aiden, which I hate. It just keeps getting better.
It's worst at night, when everything is quiet. It's then that I feel like a dragon is going to burst out of my heart with smoke and fire and tears of rage and sorrow. What do you say when someone you love is handed a death sentence? I want to throw myself at him and will it all away. He says cancer hurts. It hurts EVERYONE. We all hurt watching him hurt and he hurts just watching us hurting for him and with him because of something he can't control. Cancer sucks.
His hands, which have always been tanned and thick with mechanic's grease my entire life are pale and freckled and his nails are clean for the first time EVER and I daresay they might even need a trim. when I was bringing him breakfast yesterday, I noticed how thin his legs were. Without thinking, I slipped my fingers around and they found each other easily. Our eyes met and I saw in his the reality of the situation. It felt like someone blew out my candle. But I also saw the Daddy I have always known, strong and steady, still concerned that his daughter's heart is breaking. All of our candles are still burning, albeit dimly at times.
It hits me everyday what a loss it would be to the world without him in it. He has given so, SO much good and already defied so many odds. There have been so many miracles in his life, I feel like this is a chance to pull out a really visible, well deserved one.
The fact that he made it this far is miracle enough, considering he was born prematurely in the 50s and pronounced dead. My grandmother was basically allergic to being pregnant and also had toxemia- her body attacked him on a daily basis ever since his conception, so it's not like he's never seen odds like this before. I'm sure she will correct me here and there, but I'll tell it like I remember for now.
When he was born on October 1st, 1956, he was almost four months premature, delivered via cesarean and pronounced dead soon after. He was revived, but they were told he would never make it, not to touch him and to put him in the car and drive from Virginia to Washington D.C. to Walter Reed hospital where he could receive treatment until he died.
My poor grandma -we call her Grammy- thought "Well, if I'm going to lose him anyhow, I might as well hold him while he's here". I know how she feels, and think it's an unbelievable tragedy that she is forced to feel it a second time. It is too much for one person to bear, even once. She held him the entire car ride, despite warnings from germ-cautious doctors.
They ran test after test and concluded that he was born with Cerebral Palsy and would never walk or function at a normal level. Grammy dove into his medical care so much that they thought she was a nurse and eventually released him to her, confident in her awareness of his conditions and care needs. So, one miracle later, my grandparents brought home their new baby boy.
Too small for even doll clothes, his upper body popped out the neck of any clothing put on him. He required 2 ounces of milk every two hours and it took him almost an hour and a half to drink it. My grandparents were exhausted, but determined. It's amazing what reaches of yourself love can bring you to. Slowly but surely, miracle after miracle, he gained weight and strength and learned to crawl, though he couldn't walk and required a stroller for outings until the age of three.
He was fitted with leg braces akin to the ones Forrest Gump wore. Though his walk was unsteady and awkward, his parents never allowed for him to be treated differently. Another miracle later, he was walking. Neighborhood kids ran a little slower in races with him, made sure he was included in their play and as far as anyone tells it, he never had any idea he was different.
He got into accident after accident as all little boys do, only he had a special ability for it. Perhaps it's because he had defied death from the get-go, but my little daddy found himself in all kinds of trouble. The people in the ER knew him by name and sight. Grammy has literally hundreds of stories, maybe someday I will have the time to write them.
I remember one was when his class had been saving pennies to support a baby elephant born in their local zoo. They made a trip to visit the elephant- aptly named Penny- and he decided to get in for a better view and climbed his little (the cerebral palsy made him a little smaller than the rest of his class- it is mainly in his right side, which is visibly smaller to this day, though you can't tell in any other way) self in between the chain link fence and the inner, small cement one.
Well, that mama elephant saw him and mosied her way right on over. She probably wasn't feeling particularly threatened by the skinny towhead gandering at her baby, but she sure wasn't letting him any closer, either. When she reached him, she gently leaned her body in and boy howdy, my little daddy was pinned to a fence by an elephant!
They had to call the zookeepers to coax her away and he went away unharmed, aside from a strict scolding and some sore spots, once again, escaping incredible odds of being stuck between an elephant and a hard place.
The cancer is so much the elephant these days, it's unbearable. Both in the sense from the story and that it is sitting, luminous and grey in the room while we all try to process our grief and continue our lives as we must. I tried to show him Angry Birds on his iTouch and felt the dragon in me roused again, knowing how much all the newfangled contraptions he could be missing.
He has been taking Phoenix Tears regularly, and in it lies my singular hope. My parents and grandparents are regular churchgoers and are clinging to prayers and faith. The outpouring of love and support from their church community has been amazing. We all do what we can.
He started radiation yesterday and will continue for ten more sessions. Aside from brain radiation, they can try what amounts to a lobotomy, which sounds almost worse. I assume they will do another scan after the treatment and give us another update. I still have no computer at home and grab time as I can to write. It is amazingly hot here and the kids and I are awaiting my dad's return with his parents and Porky from riding out to the beach to see the Humpback Whale migration. I won't think about whether he thought about if he'll ever see the beach again. I hope he does.
For those interested, you can also read my mom's journey through all this @ http://thoughtsfromjan.blogspot.com/
Thursday, August 26, 2010
Tuesday, August 3, 2010
Whoops! There goes another rubber tree...
I haven't written in two months, which is almost the exact amount of time I moved across town and away from a computer. Shlomi got me an iPhone for an early 30th birthday present, so now I can at least access my blog, however arduous. So much has happened these last months with my father's care and in my life, it's hard to know where to begin. My insides are overwrought with things to spill about from not writing in so long. Honestly, it's been the hardest time I've had in my entire life.
I'll start with the week after I wrote last, when I was dogsitting and the dog we were watching killed our beloved kitten, Coco. To compound matters, I dove into concrete onto my left knee tryin to save him which turned into cellulitis and I couldn't walk for almost a week. Both my knee and heart are still sore. Aiden asked if we could take a drive to the beach and put our hands and faces in the sand to feel Coco's kisses again and I am certain a tiny part of my insides died right then. Poor everyone, not the least of which is Coco.
The following weekend, I took the kids to the Harmony Festival which was a much needed diversion. I got to see Rebelution, which is one of my newest favorite bands. I took lots of pictures (inculding ones of my glorious bright yellow knee wrap) so I'll work on getting those up when I can. 
Fourth of July, we went to the fairgrounds and met up with a longtime family friend, Suzi Mieger and her troops (she has 5, I have three= party!) which was fun. The following day, we went to pick up our #2 kitten, who was going to be the Sally to Coco's Jack (A Nightmare Before Christmas tribute: We thought s/he (Coco) was a girl when we named her, then she started trying to mate with Annika's stuffed animals and we realized he was a she. We were acclamating to the name change to Jack when s/he met his untimely demise, so we just stuck with Coco, which is what he had gone by most of his five month life. R.I.P. Coco-Jack. We miss you. Okay, back to the new kitty:) They were trying to get rid of the litter, so we ended up taking a calico girl (did you know almost all calicos are female?) and her fluffy orange brother. I still haven't settled on names, but they are happily adjusted and the kids love them, which is what matters for now. I am open to suggestions: So far, mostly the kids have come up with and like: Luke & Leia, Linus & Lucy, Charlie & Lola.... um, yay, tv tributes? Meh.
My dad was set for a new scan after his acceptance to the drug trial at UCSF on the 13th of July. He hadn't been feeling well and we weren't very optomistic. The results came back and shown that his cancer had spread -during his treatment of chemo, while on the trial- from his chest wall, lung, liver and shoulder to also include his kidneys, intestines and colon. Ouch. So, he decided to pull out of the drug trial, as he wasn't actually recieving the drug supposed to be helping and the chemo wasn't.
So, the search for another trial began. With each day, it has become a race as we all watch him slowly turn more quiet and pale. I never stopped searching for diets, old wives tales, new medicies, ANYthing to help for months now. One thing that I have found which is unique in a number of ways is called Phoenix Tears. I encourage you to check out the website and watch the videos- it is really interesting. Also worth noting is the complete legality of it all, due to our great state of California's Prop 219.
I spent weeks getting together the material (thank you so much to my friends who helped with donations, you know who you are) and a full day making it. He had been taking it, eating, sleeping and somewhat less pained when he collapsed in his room on the 25th. After a trip to the ER, 4 liters of fluids and iron supplements, he came home late that night. It turns out Kaiser missed the fact that he has pneumonia, which his nurse -also my friend's mom and a former co-worker of my mom's- caught. He is now taking antibiotics and is feeling better, thought he rarely makes it too far out of bed, which is as crippling to the heart as it must be to his body. But, he is alive, and we haven't lost hope.
Soon after his fall, I woke up with a swollen jaw- apparently, I clench my teeth so hard at night that I broke a filling and part of my tooth out. I also found out that it requires a root canal, which Medi-Cal no longer covers. Fantastic. When I said I wanted curves, my face isn't exactly what I had in mind.
Yet another thing weighing heavily on my plate is that as of last Sunday -three days ago- Tobin has gone to live with his dad. It was a heartbreaking decision, but he got into a charter school where his dad lives and he really, really needs to be in a learning environment that suits him. Also, honestly and not exactly proudly, I have been getting SO frustrated at home. I have been losing my temper and yelling at the kids and getting completely overwhelmed with everything going on. I am known for my patience in general, and especially with kids, and I hate seeing myself break down. Tobin feels things like that very deeply, and part of me wants him to be shielded from my pain, though it increases it significantly. I have been away from him one time for 10 days when he visited his dad from Massachussetts, and my limit is four days in general, which happens less than once a year. I'm not exactly sure what I'm going to do. Breathe, I guess. Hence my last entry.
On top of all THIS, tomorrow is my last day in my 20s. I can't help but be a tiny bit depressed; I am in the shittiest house I've ever lived in -though the surroundings are wonderful, the water is unusable (insert into the mix vehement confronations with the landlord here) and there is no kitchen or hallways- and I have been unemployed for the first time in my adult life for three months, which is really rough, in addition to everything else I just listed. I know all of the wonderful quotes and songs I would send to a friend in the same boat, but I tell you- I just feel how I feel.
On a lighter note, I am having some friends over this weekend for my birthday, hopefully it will provide a much needed break and change of pace. I will try to write more often, as always, for my own sake at least.. Adios 20's, let the new chapter begin.
And now, to end with a song from my childhood that keeps getting stuck in my head...
Just what makes that little old ant
Think he'll move that rubber tree plant?
Anyone knows an ant, can't
Move a rubber tree plant
But he's got high hopes, he's got high hopes
He's got high, apple pie, in the sky hopes
So any time you're gettin' low
'stead of lettin' go
Just remember that ant...
Oops! There goes another rubber tree,
Oops! There goes another rubber tree,
Oops! There goes another rubber tree plant.
I'll start with the week after I wrote last, when I was dogsitting and the dog we were watching killed our beloved kitten, Coco. To compound matters, I dove into concrete onto my left knee tryin to save him which turned into cellulitis and I couldn't walk for almost a week. Both my knee and heart are still sore. Aiden asked if we could take a drive to the beach and put our hands and faces in the sand to feel Coco's kisses again and I am certain a tiny part of my insides died right then. Poor everyone, not the least of which is Coco.
The following weekend, I took the kids to the Harmony Festival which was a much needed diversion. I got to see Rebelution, which is one of my newest favorite bands. I took lots of pictures (inculding ones of my glorious bright yellow knee wrap) so I'll work on getting those up when I can. 
Fourth of July, we went to the fairgrounds and met up with a longtime family friend, Suzi Mieger and her troops (she has 5, I have three= party!) which was fun. The following day, we went to pick up our #2 kitten, who was going to be the Sally to Coco's Jack (A Nightmare Before Christmas tribute: We thought s/he (Coco) was a girl when we named her, then she started trying to mate with Annika's stuffed animals and we realized he was a she. We were acclamating to the name change to Jack when s/he met his untimely demise, so we just stuck with Coco, which is what he had gone by most of his five month life. R.I.P. Coco-Jack. We miss you. Okay, back to the new kitty:) They were trying to get rid of the litter, so we ended up taking a calico girl (did you know almost all calicos are female?) and her fluffy orange brother. I still haven't settled on names, but they are happily adjusted and the kids love them, which is what matters for now. I am open to suggestions: So far, mostly the kids have come up with and like: Luke & Leia, Linus & Lucy, Charlie & Lola.... um, yay, tv tributes? Meh.
My dad was set for a new scan after his acceptance to the drug trial at UCSF on the 13th of July. He hadn't been feeling well and we weren't very optomistic. The results came back and shown that his cancer had spread -during his treatment of chemo, while on the trial- from his chest wall, lung, liver and shoulder to also include his kidneys, intestines and colon. Ouch. So, he decided to pull out of the drug trial, as he wasn't actually recieving the drug supposed to be helping and the chemo wasn't.
So, the search for another trial began. With each day, it has become a race as we all watch him slowly turn more quiet and pale. I never stopped searching for diets, old wives tales, new medicies, ANYthing to help for months now. One thing that I have found which is unique in a number of ways is called Phoenix Tears. I encourage you to check out the website and watch the videos- it is really interesting. Also worth noting is the complete legality of it all, due to our great state of California's Prop 219.
I spent weeks getting together the material (thank you so much to my friends who helped with donations, you know who you are) and a full day making it. He had been taking it, eating, sleeping and somewhat less pained when he collapsed in his room on the 25th. After a trip to the ER, 4 liters of fluids and iron supplements, he came home late that night. It turns out Kaiser missed the fact that he has pneumonia, which his nurse -also my friend's mom and a former co-worker of my mom's- caught. He is now taking antibiotics and is feeling better, thought he rarely makes it too far out of bed, which is as crippling to the heart as it must be to his body. But, he is alive, and we haven't lost hope.
Yet another thing weighing heavily on my plate is that as of last Sunday -three days ago- Tobin has gone to live with his dad. It was a heartbreaking decision, but he got into a charter school where his dad lives and he really, really needs to be in a learning environment that suits him. Also, honestly and not exactly proudly, I have been getting SO frustrated at home. I have been losing my temper and yelling at the kids and getting completely overwhelmed with everything going on. I am known for my patience in general, and especially with kids, and I hate seeing myself break down. Tobin feels things like that very deeply, and part of me wants him to be shielded from my pain, though it increases it significantly. I have been away from him one time for 10 days when he visited his dad from Massachussetts, and my limit is four days in general, which happens less than once a year. I'm not exactly sure what I'm going to do. Breathe, I guess. Hence my last entry.
On top of all THIS, tomorrow is my last day in my 20s. I can't help but be a tiny bit depressed; I am in the shittiest house I've ever lived in -though the surroundings are wonderful, the water is unusable (insert into the mix vehement confronations with the landlord here) and there is no kitchen or hallways- and I have been unemployed for the first time in my adult life for three months, which is really rough, in addition to everything else I just listed. I know all of the wonderful quotes and songs I would send to a friend in the same boat, but I tell you- I just feel how I feel.
On a lighter note, I am having some friends over this weekend for my birthday, hopefully it will provide a much needed break and change of pace. I will try to write more often, as always, for my own sake at least.. Adios 20's, let the new chapter begin.
And now, to end with a song from my childhood that keeps getting stuck in my head...
Just what makes that little old ant
Think he'll move that rubber tree plant?
Anyone knows an ant, can't
Move a rubber tree plant
But he's got high hopes, he's got high hopes
He's got high, apple pie, in the sky hopes
So any time you're gettin' low
'stead of lettin' go
Just remember that ant...
Oops! There goes another rubber tree,
Oops! There goes another rubber tree,
Oops! There goes another rubber tree plant.
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