A Snowglobe in Autumn

It is SO, so hard to write. It's not so much writer's block- I am a virtual fountain inside- a raging river, even... but I feel more akin to a snowglobe after meeting a toddler, neatly contained in my own flurry. That being said... for those of you who don't know, my father passed away September 2nd after an 8 month battle with Melanoma. I still can't wrap my mind around it. His entire family was there; my mom, her sister and my two sisters along with his parents and sister. I guess if you have to go, those are the people you want there. There were two beautiful articles in The Press Democrat, but you have to pay to keep them active, so they are disabled.


He had a bad day vomiting and keeping down food on 8/31 until he ended up heading to the hospital to be admitted for hydration. It had happened before, but the nurse -thankfully, a family friend- told us that this was it. I showed up with Annika, trying to maintain strength in my heart, strength in my knees, strength in my mind. I'm not sure how it happens for the rest of you, but my joints seemed to have cleared themselves of their functions as easily as my mind did when I heard the news. How do you carry yourself into a room where your very heart lies, after listening to someone hand it a number of hours? What do you say? What do you do? I still don't know.


I tried to make it normal. I thankfully remembered in my bumbling numbness to say "I love you", though obviously, he knew so. We were holding hands and he was looking out the window and I let slip an, "Oh, Daddy...". Our eyes met and locked for what would be the last time I recognized the father that I knew. I am awful, terrible, the worst at concealing how I feel, but I tried, for whatever reason. I was trying to play the role of hopeful, in control mother. I knew he saw through to the terrified, heartbroken daughter when he said, "Hey, kid. It ain't over yet." Still trying to give me (and probably himself) a ray of hope, even as death was closing its grip, finger by finger.


Those were the last words he gave me. I got him to say he would try some watermelon juice. He nodded when I sat by his bed during his last couple of days at home, assuring him that I would show my mom how to use the remotes, her iPhone and all of the things on the computer that will overwhelm and frustrate the crap out of her. He nodded again when we promised that he would always have a place in the life of Eva, my youngest sister's baby who is due any day now. He wanted to see her so, so badly. The unfairness of the situation is unbearable. I forgot to say thank you. I forgot to say I'm sorry. I forgot to even really mention the thousands of things that have crossed my mind since. I guess I really am lucky that I try to get my "thank you"s, my "I am sorry"s and "I love you"s in where they belong. I know that he knew those things, too.


I am numb. That's all I can say. I haven't cried since before the memorial service, and only twice since his death: once while I was still holding his hand after he passed and another time that snuck up on me as I was laying in bed the night before the memorial. The time at night felt like a possession- I had deep pains in my chest and abdomen, so much that I could hardly breathe. I felt my hands and feet and then body start tingling and losing feeling and knew that I had to take slow, deep breaths. I couldn't breathe and couldn't stand the pain, either.


After a few minutes, I woke Shlomi saying, "Babe! I think something is wrong..." and I explained to him what was happening. He said, "What is it? Do you think it's the funeral?" and I broke. It was if I could feel myself bursting open. Just like a genie coming out of a lamp.. maybe more like a banshee out of Pandora's box or someone in Alien, a completely uncharacteristic primal wail ripped its way out of me. Though I have never made the sound before or since, I remember thinking it sounded like the women I've seen in the middle east in the news who wear black, rip their clothes and mourn in the streets and knowing exactly how they must feel. After a few minutes of unbridled hysteria, I fell asleep and apparently the grief did, too.


The days following his death consisted of an outpouring of LOTS of calls and visits expressing love, sympathy and generosity in the form of cards, flowers and deli platters. People came and went, called and checked in, made dinner and gave great hugs. But after it all- the food, the friends and the flowers dissipated, while the pieces of everything we've ever known continue to whirl around us, the grief process is left for us each to decide for ourselves. I suppose this is part of mine.


Something surrounding his passing that has fascinated me are the numbers. He came home from the hospital on 9/1, his parents' 60-something-th anniversary. He was cremated and buried during a small gathering at Santa Rosa Memorial Park on 9/5, his mother's 80th birthday. I don't even have words. His obituary was featured wih a picture and article on Labor Day- the day to honor the working man and finally, there was also a beautiful memorial service on 9/11, which is obviously Patriot's Day, but coincidentally was also the day of Relay For Life, an annual fundraiser for raising cancer awareness and funds as well as a memorial for those who have passed from it. It was attended by over 350 people.


To finish out the dates, on 10/1, he would have been 54- one year away from being an official senior. He was planning a trip on his newly acquired boat and was in the process of having a new dashboard custom fit when he died. I remember coming into the room at my parents house in the middle of August, surprised to see my dad sitting there at the computer, researching clinical trials and checking out details for his birthday weekend. I also remember that was the first time I heard a change in his voice, from tired, but normal to raspy and audibly weak. It is something beyond words to watch the pillar of your family life crumble. He wasn't ready to go, and I'm not sure if anything will ever quell that sharp sense of injustice for me. He held onto hope, to his faith until his last breath.


Instead, on his birthday, my brother-from-another-mother, Ryan (who has been like my dad's only son for 15 years) and Anthony (who my dad taught everything he knows to at his business, The Car Doctor) got the boat running and took my mom, sisters and I out on the lake. It was perfect weather, he would have loved it. I realized that day that I have never been on a boat without my father. I have a childhood filled with camping and fishing trips, but all of them are with him.


I am lucky that my boys got a chance to share those memories with him, too. This is the hardest time for them and our family in a number of ways because his birthday started the birthday/holiday chain: Dad's birthday: 10/1, Tobin's birthday: 10/17, Halloween: 10/31, Aiden's birthday: 11/4, which sends us right into the holidays we all know and love. I feel the stark absence of his laughter more with each one that passes. I think we are going to try and go to Disneyland for Christmas- my mother has the unfortunate double-pain of having lost her own father to cancer, but on Christmas day when she was 17- I'm not even sure the happiest place on earth can balance a heart that heavy, but we will try.


I think that's all of the braindraining I can do for now, the flurry feels a bit more like icy sludge now- freezing, unsafe to walk on and sharp as hell if you break through it. I hope that Invincible Summer is in there, somewhere. I can't believe the relevance of an offhand quote I found a year ago. Between the summer and the winter lies the autumn, I suppose. So here I am in it.




Barry Patrick Johnson 10/01/56 - 9/02/10
Forever in our hearts ♥



WTF FTW: Thoughts on Cancer and my dad

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/

[Posted with iBlogger from my iPhone]

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.

Keep Breathing - Ingrid Michaelson

Ride 'em,Cowgirl

Howdy from the great state of Texas!

I have been marinating in the lack of pressing responsibilities the past few days, and it has been a much needed hiatus. Of course, there are the daily phone calls from my sisters, frustrated with each other or the kids or of my dad not feeling so well that keep me firmly planted in reality so I don't just float away into the humidity. I can also say I remember -after years- what it feels like to really, really miss my kids. Tobin came in 2nd in his school's spelling bee! I am SO proud!! (I also came in 2nd my first year in a spelling bee, but that was in 4th grade, not 2nd) Go, Tobin!! Annika fell and scraped her elbow and I feel the same pull on my heartstrings in missing that as well. I probably missed Aiden doing bicycle stunts while swordfighting alien-ninja-pirate-robots atop a skateboard, but that's pretty standard, so I'll see it again when I return.

All the same, I am really enjoying Houston, too. It is HUGE! We went to the Museum of Natural Science, which was awesome. I have been to the one in Washington D.C. as well and it is one of my favorite places EVER. The main difference in museums is that the Houston museum has an entire section about oil, courtesy of Halliburton. I learned a lot, but I wish there were as big of an exhibit on finding out about other natural resources as well, but hey- it IS Texas.

Also filed under huge is The Galleria. It ias a mall as big as all of Santa Rosa's downtown! It has two Westin hotels, two Macy's, a Tiffany's, Chanel, Gucci, Versace, Fendi, Dior, YSL and like 300 other stores to drop your entire year's salary into. In the middle is what I thought was the most awesome- an ice rink! Smart thinking for people who go outside and immediately melt away.

The grocery stores are huge, too- they even have enormous natural/organic food selections, which was refreshing. My first day in, Shlomi and I went shopping to get some foods that are conducive to his poor belly and as I was picking out produce, Tori Amos came on over the speakers. TORIIII!! For the few of you who are reading this and don't know me very well, Tori is as close to Buddha or Jesus or Pope John whatever-the-heck as it gets for me. I took it as a personal welcome from the Universe to say "I promise, the Texans will not BBQ you, oh native Californian! Be free!" (nevermind I have no meat on my bones anyhow, but I digress) Also, for the same few people who don't happen to know me so well, it's fairly impossible for me to keep what I am thinking or feeling on the inside. Put me in public, hearing Tori Amos with these two insights and you can imagine why Shlomi stepped in close to say "Honey, people are staring!" as I stood, hugging a bag of organic granny smiths, head tilted back, eyes closed, swaying in the middle of the aisle. Hey man, take your moments when they come! If I know anything, it's that life can take your routine, your marriage, your house, your job, your health... anything, really, in a matter of a single day.

On the other hand, you can also be taken from that life and be put in the arms of someone who loves you (nevermind they may be informing you that you appear slightly insane) with your favorite song and a favorite food, in a random grocery store in a state you never particularly wanted to visit and be put right back in touch with yourself in another 24-hour single bound. My paternal grandmother, whom we lovingly refer to as Grammy, has given me two simple pieces of wisdom that get me through a lot- the first of which is: This too, shall pass. I know that both the despair of feeling helpless and overwhelmed and the bliss of random Tori surrounded by organic produce are passing moments, which is the only reason I can know that I can withstand whatever stresses happen in the day-to-day as well as remember to stop and breathe it all in when when the breaths of fresh air come.

I am going to really miss Shlomi. We have never had so much time together and it has been amazing. He moved here to start a business and had his first job yesterday! I am happy I was here for it, even though it just meant waiting for him to come back to the house so I can see him again. I walked around the apartment complex when he was gone- it, as in most everything else- is HUGE! There is a pool with a fountain and a separate water play area for the kids. His apartment is exactly next to the playground and has a sunken bathtub, only the latter of which I have personally, ever so happily, utilized. We were sitting on the couch watching a movie last night and for the first time in a long time, I was completely relaxed, my only thoughts swimming in love for the moment and him. I am going to box that up and save it for future reference when I am feeling like I did my last post or the days prior to it.

For now, Shlomi is home from work and we are going to go figure out how to spend the rest of my last afternoon here while I gear up for life's next wave... ride em' cowgirl indeed. Yeehaw!

Wow. So today is the day of my dad's appointment at UCSF. They are going to give him a complete physical and have a meeting and decide if he is a good match for their trial... all I can do now is wait. Well, that and spend the day running around because tomorrow, I am going to go visit Shlomi in Houston for the weekend! (♥ insert sigh of relief here ♥) It's been almost 6 weeks! Even my visit has sort of a bitter-sweetness to it because unfortunately, even Shlomi isn't immune to this epic series of unfortunate events- he was in the ER last night with what ended up to be gallstones and was told he'll need surgery to remove his gallbladder. This sucks aside from the obvious on many levels, since either the surgery will be out of pocket insane expensive here or he'll have to go back to Israel for it and likely end up staying there. Both options aren't exactly favorable for either of us, so now I will add Shlomi to the list of people whose diets I am trying to overhaul for my own selfish desires of their company.

As soon as he called, I immediately hopped upon my trusty Google steed and rushed around, pen at the ready, searching for alternative/holistic approaches to help prevent and treat gallbladder and liver issues. Unsurprisingly, (to me, who stopped eating meat in 1993) the most widespread treatment was the removal of animal products from the diet. Have you guys read Diet for a New America? It's a book a read a long time ago and could probably stand to read again, but it is yet another one that really sheds some light on diet and animal consumption without being terribly preachy. John Robbins has a new one out I haven't read called The Food Revolution I'd like to get my hands on, too.  Most websites, articles and books seem to concur that even the modification of more veggies (the raw-er the better) and cutting down animal product (meat and cheese, basically) intake by 20% can really boost your overall health. Sorry if now I sound preachy, but folks- I can't take any more unhealthy people around me! Save yourselves, I'm tired!

Speaking of which, I have had some really, really hard days recently. I am okay now, but probably I haven't written because I keep fighting off depression and it's really difficult. Some days I am so angry I feel like my chest is going to explode and howling banshees are going to fly out my mouth, smiting everyone around me with fire and smoke. Sometimes, I am so sad, I feel like Eeyore... like there's a cloud made specifically for me that I can't see through the gray of. Most of the time I am busy with the kids and helping my dad and it keeps my occupied, but sometimes the sheer magnitude of everything is so clearly felt on my shoulders, I literally can't even move. Luckily, I have Amber to cry to, Shlomi who makes me laugh, Porky (my youngest sister- we really call her Porky, I think even she forgets her real identity...) pitches in with the house and kids and somehow, amazingly, I live.

So now, I am off to take Annika for a playdate with Grace, her soulmate and very bestest friend before I go crazy trying to get everything done today so I can leave peacefully tomorrow. I just finished juicing with Annika so we are all healthy and ready to go! I can't get over how pretty the juice is and how good it tastes. Okay, another day, take 1....

Living on the Ledge

Ohhhhhh boy.

I'm not sure my life could pack more into each 24 hour period if it tried. First and most importantly, my dad has an interview for a trial May 19th for a study at UCSF in which half of the people get chemo and half of the people get the new PLX4032 drug I have been writing and reading about. Whichever he gets will help- if he gets the test drug, hopefully it will REALLY help. He'll know once the study starts, since chemo is via IV and the PLX4032 is a pill, but there's no way to know until then. So, we wait.

In the meantime, we have been working on working more vegan and raw foods into his diet, which he's been a real trooper about. I would NEVER have thought I would see the day where my dad is drinking spinach and beet juice and, dare I say, even approaching not-all-the-way-gagging-and-perhaps-vaguely-getting-used-to letting me use him as a guinea pig for my raw foods test runs. I made something that was called Philly Cheese Steak something-or-other last night, which would have retained more truthful appetizingness had it been called "Portobella Lettuce Wrap with Goo" but it was actually pretty good. We both had seconds, even! One resource for recipes we have been using is the Hallelujah Acres website, there is also Living Foods  and ones like VegWeb, that even help with meal planning and grocery lists.I should put in here that my kids are being troopers as well and really enjoying the variety of new flavor combinations- I am SO lucky to have children with broad palettes!

There is so much that I feel squeezing the bejeezus out of my insides recently, aside from everything happening with my dad. Even small things touch right in my core, ie: every morning when I drive the boys to school, we see the same things- some maroon F150 passes us in front of the same house almost every day. We check the weather at the top of the hill and take an extra moment for how the light hits a certain tree. We also see a border collie that chases us along his wire fence and the same two gray and orange (respectively) cats sniffing around, watching the traffic a few houses up.

Last week, right after we got the news about my dad, I saw gray cat on the side of the road- obviously having been hit by a car. I could have cried- for it, for his cat-friend, for it's owners. The next day when we passed, the orange cat was sitting where the gray cat had been laying, licking the grass. Ouch to my heart #2. The poor thing! And THEN, this morning when we were driving, the orange cat was laying -horribly, but I won't describe it- in the middle of the road. I noticed quickly enough to avert the kids' eyes across the road to "Hey look! Is that a deer?" and took some breaths, but JEEEEEEEZ! Seriously?! Does it have to keep being like that?! Come ON here. Sometimes I hate paying attention to details.

I have still been repeating the Hellen Keller quote to myself when things get overwhelming. I use Pandora Radio when I am on the computer, and this morning it played "World on Fire" by Sarah McLachlan, which really seems like a musical version of the same thought.



I have come across other things that help my heart in various ways, too. When I came to my parents house this morning, still reeling from the orange cat's demise, the sports section was open. I never give two glances at it normally, but the headline was "A Mothers Day Masterpiece"  and the story is all kinds (I counted 9) of awesome. It is about a 24 year old who (awesome part #1) pitched the world's 19th perfect game (#2:) with his grandmother (his mom died of breast cancer when he was in high school) present in the audience (#3)on Mother's Day. (#4: Also the same pitcher who got up in the A-Rod's face a while ago, heh heh.) What touched me is (#5) that there, in all the pictures of sweaty cheers from his team mates, are all these pink sweatbands and pins for breast cancer awareness on all these professional athletes. Aww. Even more awesomeness is (#6) that this guy grew up here in Northern California and (#7) that he is receiving IV therapy himself for a condition I don't know about, but he pulled that game off while sick enough to need it beforehand, which is pretty savage. And lastly, (#8) he's a Leo AND (#9) a lefty! Rad. So the entire world isn't entirely imploding in heartache, just mine at times.

Another thing that was really revitalizing is that the day after I posted that we needed a juicer and a dehydrator, they showed up from two different places the very next day! I really feel juicing will help my dad get the nutrients he needs, so that really is a wonderful gift. The juice that comes out is tie-dyed looking, which I think happens to be an added bonus... My dad would say it's just the seal of hippiedom- either way, it's good stuff! So I still have faith that my family's needs will be met, it's just really, really hard to catch the glimpses of hope around sometimes. Even the weather has switched back to rainy, confound it all! I need the sun! Um, and sunscreen, of course. Bah.

I am off for grocery shopping. Love, peace & veggies to you all. ♥

Hearts are worn in these dark ages
You're not alone in this story's pages
Night has fallen amongst the living and the dying
And I try to hold it in, yeah I try to hold it in

[Chorus]
The world's on fire and
It's more than I can handle
I'll tap into the water
(I try to pull my ship)
I try to bring more
More than I can handle
(Bring it to the table)
Bring what I am able

I watch the heavens and I find a calling
Something I can do to change this moment
Stay close to me while the sky is falling
Don't wanna be left alone, don't wanna be alone

[Chorus]

Hearts break, hearts mend
Love still hurts
Visions clash, planes crash
Still there's talk of
Saving souls, still the cold
Is closing in on us

We part the veil on our killer sun
Stray from the straight line on this short run
The more we take, the less we become
A fortune of one that means less for some

motorcycle mania

I had a dream last night that it was dark in the city wherever I lived, and some thing- some BAD thing, was coming/taking over. (though it was never seen) In a corner, I see some Gaga/Christina Aguilera person (right?!) just sitting on a motorcycle (much like the R1  my love loves) in a matching helmet and outfit, posing, ready for a picture. Hel-LO?! I remember thinking. You are just SITTING on a motorcycle and we need to GO! Not that either one of us knows how to ride this thing, but... I got on with her, started it and somehow, got going. Okay, so I may have driven a bit like Jim Carrey in Dumb and Dumber at first, but I was moving. That is, until we found the whole city was surrounded by some insane mountain.(somehow) I thought Okaaaay... well, this is a powerful motorcycle, let's just get over this and get out of here! ...except that charging a motorcycle up a crazy dream-steep mountain was pretty much only a great way to do a backflip of death and kill both myself and my passenger. Damn. Okay, so we'll go slowly, you stupid mountain! Here I come! I had to use the engine power to try and leap almost vertically, then land on the dirt and slide down to only feet from where I started. But I did it over and over and over again, until I woke up. I will find a clinical trial to help my dad.

This whole thing is more than I can bear. It's more than anyone should have to. To hear straight from his coordinating nurse's mouth, "I'm so sorry, honey. I see this all the time and the life expectancy with this is usually less than a year" is crushing. Still, especially if it is true, there is no time to wallow in self-pity about the looming possibility that the world as I know it might crumble soon. I am alive, he is alive and as long as those two things are true, there is nothing, NOTHING that will stop me from waking every morning, getting my kids to school and getting on my motorcycle to get over that mountain. 

I tracked down Dr. Flaherty, the lead doctor in all of the clinical trials in the NY Times articles, who wrote me back! I was really impressed that he personally took the time to write me, and within a couple of days, too. Unfortunately, he said that there are no more currently trials for PLX4032, which was the drug we were resting our hopes on. However, he mentioned a new drug that hasn't hit the news or markets yet called GSK2118436. So, the door hasn't closed, it's just changed addresses.

Yesterday, I called literally every single doctor and drug company I could scour off of the internet with any link to an applicable clinical trial for him. I even spoke to a few humans in all my message-leaving, all of whom were very compassionate and helpful. I have been working separately on a new diet regimen for him as well, consisting of as many vegan and raw foods possible. I have been reading The Hallelujah Diet ,  The China Study and anything else I can find to pulling recipes from as well as searching the internet for other alkalizing foods and any other form of nutrition and diet therapy to combine. I have brought him wheatgrass shots, which he managed to get down with minimal grimacing. Impressive, considering it takes me a full 30 seconds to reopen my right eye after I take one! We are still looking to find a juicer (both for fruits and wheatgrass), a dehydrator, a pasta maker and a food processor for him so we can fully utilize all of the recipes and foods involved, but one thing at a time.

Of course, all of those things cost money, too. Yeeeaaah. Have I mentioned I'm not working? I lost my job selling fragrance at Macy's because it gave me asthma and pneumonia last month. It gives me time to be with my kids and help my dad, but I'm living on about $200 a month at the moment- thank goodness for SonomaWorks! This is aside from the thousands a month my dad loses due to his inability to work, and aside from the accrual of bills that mount for him monthly for the same reason. Again, one thing at a time.

One thing in the mix to help already is a promotion my aunt and uncle (his sister and brother-in-law) are doing with their company, Glass Dharma  is donating 75% of their sales profit online to the Barry Johnson Cancer Relief fund. You can check out who they are and what they are about by clicking on the link above as well as checking out their promo flyer here. There are a number of ways you can help- buying glass straws is definitely one of them! If they don't fit your fancy, or you just want to give a donation, there are a few simple ways you can, right now at your computer! Remember, every little bit counts. The motorcycle can't make it up that mountain without gas and willpower, only one of which I have in stores.

The simplest way at the moment is via PayPal. It does take registration if you don't have an account, but it is a secure, one-time happening that takes only 5 minutes. Then, simply go to the "send money" tab and enter BPJ716@aol.com as the recipient. There is even a way to donate via text once you have an account! Simply send a text with the amount and e-mail to 729725 (PAYPAL). (ie: Send 500.00 to BPJ716@aol.com). It's that easy, I tried!

Okay, time to hack through the lists and articles that seem to breed by themselves when I'm not looking. On the bright side, the roses are blooming EVERYwhere right now, and you can bet your buttons we are stopping to smell them. 

Thank you Hellen Keller, for seeing the light.

My daddy is going to die. Despite hearing, "The Melanoma is in his lungs. It's in the wall of his chest, his blood and his lymph glads. It's not good. It is a really, really aggressive form and stage of cancer."- that is the only thing I heard... like a hot knife through my ears, through my head and heart, deep into my stomach, where it is currently hosting a tea for all its friends. (I did put some yerba mate down there this morning...) I am trying to forget having read that cancer in the lungs causes the most deaths of any cancer a year in men and women both, and trying to remember that he might die of old age in 50 years. Somehow. He might get in a car wreck on the way home and render this whole upheaval useless to a completely different one. So might any of us, which is really the point.

I have been reading maniacally all morning -really, for the past few months, but now I am being raced- for articles, tips, recipes, books, theories, ANYthing that helps me help him. There is one silver lining in all this, which is that there is a clinical trial for people with 4th stage Melanoma WITH a specific gene mutation, which the results came back for and he has! Nevermind he had to do the research to find it himself, contact UCSF (where it is being tested) himself, ask to be tested himself and even ask for the xray for his chest where the spots were found (and initially felt by) himself- have I ever mentioned the importance of self-care? Anyhow- so the drug being tested is called PLX4032. There is a NY Times article about it here if you are interested. It isn't a miracle cure, but it's part of a new target method for treating cancer, rather than broad spectrum treatments like radiation and chemo, which I think sounds a lot more practical, not to mention comfortable.

If you're reading this, you probably know me and know how into holistic health and healing I am. I believe- I know, that treating problems holistically- even outside of the body, are the best way to heal. To treat the cause of the problem in the first place is much better than trying to nuke it and hope it goes away. The same could be said for all body health issues, problems at work, home or say, in a marriage. Hmm. But I digress.

I was reminded of a Helen Keller quote I used to have hanging in my living room which inspired me then and has reminded me now,

"I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do."

 He isn't dead yet. Neither am I. Just because I can't cure cancer doesn't mean I can't find everything known to man to slow it down and make it easy for him to try it. I brought him wheatgrasss at work today and he didn't implode of veggie overload, which I think is a good sign. I will be employing my nutrition-nerd-knowledge to help formulate a raw-ish- veganyesque type diet for him and boy howdy, I am even going to prepare it! I figure since maybe my cooking is so atrocious, maybe if it isn't cooked, I can't completely ruin it? Or maybe he'll be expecting such a repulsive taste due to its health properties that he won't know the difference. Either way, this is what I know, this is what I will do.

Back to the books for now....Feel free to use this as an excuse to stop what you're doing and hug your kid, your own dad, your significant other, your friend. I've been doing it all day.

waiting waiting waiting

Bah. Today I am waiting for the phone call with the results from my dad's last PET scan. I don't know what PET stands for- but here it is in layman's terms: They give him a radioactive sugar shot (I call it a Spiderman Shot)  that seeks out and attaches itself to any parts of his body where there is cancer. Then they basically microwave him to pick up where those areas are and take a picture. I think I've been breaking things down for my kids so much that most of my explanations involve fictional characters at this point. (Unless it's Tobin, who I actually have to look up the acronym for PET for and who wants to check out the insides of the machinery AND his grandpa)

He had chest pains last week and went in for an x-ray, where they found a suspicious spot on his lung. He also started his cancer treatments with a spot at the base of his neck that they are looking at- both places are inoperable. If they are there, they have already survived one round each of chemo and radiation, which is scary. Still, there is nothing to do for it but wait. Dammit.

Time to pick up the boys from school, I will try and write more soon.

Here's hoping...

It's been so long since I've written, which somehow always seems to manifest when I've the most to write about. The last year of my life have been the most.... whew, I don't even have to word- upheavaling? that I can recall in recent history. Just to summarize: A friend I was close with in high school died, I came to Ca for the memorial and suddenly found myself divorced and living in here again, with my entire life as I knew it evaporated- My life then moved onto working, single parenting, starting a relationship, finding out my dad has advanced stage melanoma, moving, having my significant other move 2/3 of the way across the country, having my niece come live with us, getting pneumonia and consequently losing my job selling fragrance as a result.... and poof! Now you're caught up. Kinda. Right.

I have been positively awful and keeping in contact over these past few months, and I wish I had it in me to send a handwritten thank you to so man people that deserve that and much more, but keeping my head above water seems to engulf most days at the moment.

Not to say we're not happy or healthy and doing well, despite the backstory. The kids are excellent- Aiden LOVES school and really enjoys his friends and learning. Tobin has 9th grade reading and math levels and is a tad less enthused with 2nd grade, but still finds things to put his creative and scientific mind into with projects and the books he continues to devour. Of course, Annika is the cutest little thing ever. She is a handful and a half, but she's so damn cute doing it! My dad has finished his chemo and radiation for now and retains an excellent mental and spiritual outlook- we are still waiting for the final scans to tell us about some possible trouble spots, but for now, we wait and take things one day at a time. I will see if I can fanagle a link to some recent pictures of them here, and see if I can somehow coax myself into writing more often. 

So there's an ubermini nutshell of an update, we'll see if I can elaborate more in the future. Feel free to check back, comment, say hello.

peace,

Julie