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