erik says

(Andree here: Got this note and the photos this morning.)

Just last summer....

Nancy and I want our kids to be comfortable being world citizens. As soon as Jaeger was old enough to appreciate traveling to other countries, we brought the kids to Taiwan, China, Hong Kong and Thailand.

It was great for me to share a dinner with my family at the Kowloon Swiss Chalet, my favorite place to eat in Hong Kong. I’d eaten there for years so often alone or with associates just wishing my family was with me. The staff at the Hyatt in Dongguan China still ask about my family by name since they stayed there with me for a month while I worked for clients in nearby factories. We brought the kids to a factory so they could appreciate the abilities and talents of the workers.

I thought everyone visiting the erikproject blog would like to see pictures of Nancy’s and my kids and the life that we are helping them to have.

Now, you poor folks, look at my vacation pictures of Lyric and Jaeger!

Jaeger bare-hand fishing.

Jaeger post-crab-pinch. Now he understands “Pinch”.



Jaeger first time open ocean reef snorkeling.

Jaeger ready to explode with happy on a baby ‘Phunt!

Family ‘Phunt ride. Lyric laid on Konpoon’s head and sang to her.

Lyric and the dream of seeing a baby ‘Phunt.

Lyric and a bannana-bribed monkey pal. Those monkeys are dicks.

Lyric sporting the latest rainy-day fashion in Hong Kong.

Give 'em hell, Uncle Erik.

(Andree here, photo from Brynn) Jemma (freshly out of school play costume as an Egyptian princess) and Luca are not about to let Uncle Erik cave in without a fight. That's right, kids!

Paperwork.

(Andree here) Yes, paperwork. Nancy does a lot of it. And then she packs it up and sends it. Which is why we have another quiet spell here at The Erik Project. You just can't hear the printer going and the papers rustling, is all. Nor can you hear the "bleh" sounds Erik makes as he drinks his potions and enzymes, but drink them he does, several times daily. So things are getting done and small and proactive actions continue. A second opinion is going to be in the works soon we hope, and of course as soon as I know, you'll know.

A note: As you saw in the recent pix of the Stride event, Erik does get about and gets things done, as he likes to and as he should when comfortable. We all know this is not a good thing that he has, but he is doing everyday stuff as much as sensibly possible. Why not? That's a positive move in and of itself.

Striding.

(Andree here) Nancy sent me these wonderful pix of Erik enjoying the Stride school event with the kids - who ran 1.5k, I might add!

I saw E Saturday and Sunday. He was in form to eat a bit of spaghetti Saturday and enjoy a massive thunder and lighting storm out at his house. He's healing up from the skin samples taken from him by his dermatologist -- "What did they use, man? An apple corer?" I said when I saw the scabs. Nothing bad found there, just some kind of rash.

Yesterday morning he was a little more subdued at first after a restless night and thinking maybe a liquid diet would be nice to give his gut a little break. The idea is that the enzymes he is taking will among other things etch away at the adhesions in his intestines which pull and push not so comfortably when food is to be gotten through them. Till they do, liquid cuisine would cut down his discomfort. That's really what bothers him most!

Andy and Amy Collen dropped by a little later. By then he was moving around and got into the putting up of his new gate. We didn't let him lift, but he got to do all the fiddly bits with the attachments. Oh wait, we DID let him lift some shelving later.

So let's all think about telling some adhesions to piss off, and about E having some more gut comfort and some more rest.

The battle cry sounds in North Carolina

(Andree here) That excellent shirt Erik was wearing a post or so back? Here's the man who designed it - Bob Byrne, in the center, flanked by (L to R) Robin, Jesse, Fox, and Fox. And here's Fox and Jesse again:

Manifest.

(Andree here) I got a note cc'd to me from E in which among other things he notes he's been

"thinking about manifesting problems with your body and if that was true could we manifest comfort and contentment even though we shouldn’t be feeling well. Something to think about." (He'd been watching the movie Lars and the Real Girl - a touching and deftly done little flick, in which manifestation is essentially a character of its own.)

He says he meanders between feeling good (sometimes very good) and feeling achy&painy. Understandable. Relaxation helps, which doesn't surprise anyone I'm sure. By the way, thank you everyone for chiming in through the blog rather than phone calls - it truly does help him relax, and now you know for a fact you are all part of that healing process!

Erik says

Hi kids! Wanna hear a story?

When a grizzly is charging you and all you have is one shot to stop it, you have to maintain your aim and composure and fight urges to panic. You must strike when it’s almost on top of you.

Sounds simple, but it surely isn’t easy. Trigger fingers get itchy and twitchy.

I’m told I have a rare, aggressive cancer. Ready for some really sour news? My Oncologist’s prognosis is 9 to 18 months before it takes my life, 18 to 24 months with chemotherapy every 2 weeks with a possibility of up to 5 years as he has seen with another patient. There are no chemo treatments that are designed for this specific cancer so they have to utilize a course of treatment for this “classification” of cancer. There you have it. Those are the statistics.

His words are very compelling because he is the man, the oncologist who effectively stopped my dad’s Acute Lymphasitic Leukemia a few years ago with chemotherapy. He is a great guy and my family is thankful for his services.

18 to 24 months, maybe 5 years on chemo and that’s it? Welcome to my grizzly story.

“Geez, that’s coming fast”, says I when I heard the news. Then I laughed. I laughed because this is re-god-damn-diculous. Nancy and I have taken great steps and much toil to proactively maintain great health so we would be up for any challenge that life could conger up and ensure that we could excel at attending to our responsibilities. Still, if Lance Armstrong can get the creeping crud, why shouldn’t I?

How to fight the grizzly.

The team of Nancy and Erik are not pursuing chemotherapy at this time. It is a system of limits. Instead, we are researching blends of therapies to construct a complex of possibilities. Though this process starts with a philosophical approach, it rapidly reveals many tangible alternatives that can have profound, positive effects on the body.

We are taking a breath and studying the grizzly as it continues to approach. Or is it still charging?

In the past, my primary care naturopathic doctor has been able to proactively aid my health and through nutritional supplements to alleviate my issues. In 10 minutes using chiropractic and a weird nerve thing he did with his knuckles on my pelvis he eliminated a chronic leg pain that had bothered me for months. This was a pain that my western doctor told me I would have to live with by taking painkillers the rest of my days.

My naturopathic doctor has studied many forms of healing with the intent on discovering realities and possibilities whether or not they are accepted by the method of western medicine. Notice I didn’t say western healing.

I am currently on a very aggressive course of naturopathic supplements, hydrotherapy and acupuncture blended with enzymes and ph enhanced waters to make my body un-hospitable to cancer. Many times during the day I feel very strange as my body undergoes profound chemical changes. Sometimes I mentally and physically shut down from these effects. I am also using the sun for light therapy. All these things conspire to effect me dramatically. I think that a change is upon me and cleansing is in progress. I’d like to think this grizzly doesn’t like the look, smell or taste of me anymore. Maybe it isn’t charging as quickly as before. Maybe it will stop and go away.

In the meantime, we are researching integrated techniques that may include surgery, direct abdominal chemo, enzyme treatments, harmonic frequency, spiritual good will, sunlight and others. We are interested in integrated treatments that understand that only the body can heal and rebuild the body, as it continues to do throughout our lives. Integration of cancer stopping and body healing techniques is where we will find a better prognosis for this situation.

The oncologist who stopped my dad’s Leukemia only stopped the Leukemia. My dad, fueled with the belief that he was never going to die from his cancer, the constant watchful care from his family, friend’s good will from across the globe, generally great spirits and sense of humor and optimized nutrition healed and rebuilt himself from the effects of the cancer and the damaging effects of chemotherapy.

My dad, in a hospital bed, looking like the Adam’s Family’s Uncle Fester with a busted nose said to my brothers and I “I’ve done a lot of interesting things in my life. Might as well give cancer a try!” He did it. He’s back. Obviously it’s my turn to do the same.

“iamnotdeadyet”
Erik
5/21/08

Cleanout

(Andree here) Saw Erik yesterday for a little bit while Sean, Hans, Adam (! surprise) and Andrew were helping to clean out his garage.

Erik plans to have a bulletin in a day or so to get us all up to speed on the situation and where they're at.

Meanwhile on the 15th he and Nancy read that narcotic pain killers helped with cancer cell growth -- guess what his pain patch was. It was Fentanyl, a narcotic. They took it off late 5/15. 5/17, after some rest and a lot of Bio high-alkaline water, he was feeling a lot better and even had a long day at the kids' school fundraiser "STRIDE" event, where he got to see the kids run 1.5K. Then the family went out for pizza until 9:45ish PM. Yesterday he was just on advil and tylenol. He has "breakthrough" stabbing pains in his left mid back area when he breathes deep, hiccups, yawns, coughs, transitions from lying down to sitting and vice versa, or otherwise moves too fluidly. "So that sucks," he says, and we'll get him moved past that.

Aunt Tomeli has the Irish on the job

Aunt Tomeli from Northern California wrote a very nice email, and says,

Prayers are coming in from ALL over the states, Italy, Ireland, France and England. The Irish are notorious for grand prayers and as your grandad used to say before he converted, "beads are bangin' all over the place." -- referring to the Catholics saying the rosary.

We have heard from China, from Australia, from the East Coast, and from Germany, but not even that covers all the sources of all the kind, strengthening messages. Pretty awesome that. And pretty awesome all of you.

Words to live by. I guess.

I found this in Maira Kalman's Principles of Uncertainty, and stuck a copy of it on my wall. My scanner refuses to let me scan in anything less than trapezoid arrangement, but you get the idea.

Speaking of uncertainty, at least I hope never to be as clueless as this guy:

Chemistry

(Andree here) I just talked to Erik for a moment. He actually sounds quite good, and he assures me he's not too bad at all, though his voice is tinged with the weariness come by honestly when you've made Round #2 of trips to various offices for Paperwork One Really Kinda Needs PostHaste Here, only to find none of it is ready yet.

So much research yet to do, so many options both Western and alternative to examine and analyze. To be well informed is a treatment strategy too. You know the old saying "Knowledge is power"? Very applicable here. It's easy to move if we settle for only what's offered; when we decide to seek the better than, that takes time. And that's why I haven't posted anything definite yet.

Meanwhile, Erik continues on the intensive course of naturopathy designed for him, which is aimed toward turning his chemical makeup into an environment inhospitable to cancer, but fortifying to himself. Getting ready to move swiftly and well when the course is chosen and the papers are in order.

Two down.

Hans here:
So, for those of you that may be a bit far afield these days from the Washougal, Washington Purdoms here is an example of a not so typical- typical day with Lyric and Jaeger. Jaeger's bottom front incisors were getting loose and ready to make their way to the tooth fairy. Apparently, the story goes that Lyric (above showing handiwork) helped facilitate those pesky teeth (shown left) from their respective sockets and under the pillow to be found by said tooth fairy. You might notice that the pictures aren't exactly in focus..This is to be expected when trying to take photos of two kids that are perpetually in motion. For many of you that never knew Erik as a kid it might be hard to emphasize how much we all see of him in his kids... but with a jigger of Nancy mellowness. They are creative, quick witted and not so very much bound by the rules all the time.

Keep mustering the positive vibes.

Bookworms

(Andree here) Or should that term be updated to "networms"? I guess not. In any case, that light clicking sound you hear in the distance is a passel of us beating our mouses up as we hang online, seeking that path to get Erik onto asap.

Some very helpful emails have arrived to that purpose -- but don't forget, all emails sending support send help, too.

So keep checking back. Quiet now, but developments to come, any day.

Watch this space

(Andree here) Hi everyone,
As Erik and Nancy get further into options and possibilities, we hope to find the perfect practicioners to meet him halfway and pursue some important phases of The Erik Project with us. Somewhere, here in the US or in whichever country it so happens, we're going to find the right doctor to step up and take this on. We're looking intently now. As it stands at this time I do not know when we'll find and introduce that key Project member, but find that player we will. Sooner rather than later would be good!

So I just talked to Erik

(Andree here) "I wanted to check up on you so I can tell your many fans how you're feeling," I said.
"Pretty good today," Erik said. He got some sleep last night (thank you, all those who helped wish that into existence, and hold that thought will ya?). He gets up in the night when he's not comfortable, sits in a comfy chair, does some research, gets a little more sleep eventually.
He and Nancy, and Mom and Dad, are still working hard collecting his data and papers. This could be an easier task, frankly. Once these items are assembled they can be submitted to the right people - finding of whom is the other major task. Details as they come to light.
No, it's not easy having the rarest form of a rare disease, and an aggressive one at that. He knows what he's up against. This illness wants Erik and it wants him bad, but if it thinks it's going to get him easily or soon, it had better think again. As Erik said, "There are possibilities there. And I'm upbeat."

It has been said that in the early 80's some near and dear to me wondered if I was going to end up a card carrying Society of Creative Anachronism member, with the cape and the broadsword and the ye olde items of painbringing. Personally, I see myself more as a dagger sort of chick. But my point here is that when I think of this disease thinking it can walk on in here and have my brother, I imagine beating the holy crap out of it with axes and staves and whatever those round things with the pointy bits are, and, uh, broadswords. And stomping on it in thigh-high boots. And then spitting on it, pointing, and laughing, and saying, "Today was a good day -- for us. You, not so much."

Hooray for creative visualization.

Anyway, Erik wanted to get a bite (yay!), so I told him to go eat and get some sleep tonight. Wherever you are, lift your voices and say it with me: "Go eat. And get some sleep."

When they kick out your front door

How you gonna come?

With your hands on your head

Or on the trigger of your gun?

--The Clash

Make it happen / Dog break

(Andree here) Hi everyone,

Tonight I have a favor to ask with those good wishes and energies you point E's way: Please, visualize for Erik a good night's sleep and a little more comfort.

The battle is on to get him slotted into one of the 4 hospitals in the US we've chosen, 3 of whom were in that list I posted. This takes a lot of time and energy, and as you can imagine it's hard to switch that off for nappy time. But good rest is so important and rest he must.

Oh, and if any of you have solid contacts at U Texas M H Anderson Hospital in Houston / Sloan Kettering / Johns Hopkins Hospital / or the Washington (DC) Cancer Institute, what say you shoot them over to the hotmail address?

Thank you all, as we do all day (believe that), for the support, the love, and the emails. And for a reward, we bring you Joel, Lesa and Olivia DeGagne's dogs (what are those little guys, Lesa? French bulldogs?), MeMe and Charles.

Best hospitals for cancer, 2007

(Andree here) Hey everybody, FYI:
In 2007 US News and World Report ranked national hospitals by 17 specialties. Here's their top 6 in the nation for cancer:

#1
University of Texas M. D. Anderson Cancer Center, Houston
#2
Memorial Sloan-Kettering Cancer Center, New York
#3
Johns Hopkins Hospital, Baltimore
#4
Mayo Clinic, Rochester, Minn.
#5
Dana-Farber Cancer Institute, Boston
#6
University of Washington Medical Center, Seattle

Quiet and restful

(Andree here) Hi everyone,
No news is good news and that's why no post yesterday - we were all settling down into research mode and staying-calm-and-positive mode. And today we're the same!

Got a citation you think we need to check out? Send it over to the erikpurdomproject hotmail.

Many, many folks have written to wish E well, and you all deserve a special thank you. Our family's wish to each of you is that you and yours stay well and happy - yes, happy, because you know Erik won't have it any other way.

Stay tuned - when I have news you will!

We know a little bit! / Nummers

(Andree here) So it's been a long day for us all, Erik and Nancy not least. This is what we know: Dr. Zeff made some excellent recommendations for proactive cancer care facilities, and so for the next days/maybe couple weeks Erik and Nancy are gonna put the pedal to the metal, researching what's on offer and getting him slotted into wherever he likes best to go. There is still time to do that.
Please, everybody, give E and Nancy a lil' space to work - Nancy will be hip deep in factfinding and though she loves emails won't be able to respond. Make comments on the blog, or drop more lines at erikpurdomproject@hotmail.com, and I will make very sure they know you sent the mojo.
Important to know: Erik had a fine day today overall, feels reasonably good except for lingering effects of having his innards stirred, ate a serious meal (chicken!) with Mom and Dad, and has expressed in no uncertain terms a wish for food he can eat that tastes good. Not the request of a quitter, so there ya go.

One word: Eggers.

(Andree here) It's 4:15 and we're waiting to hear about the first leg of the road trip. Meanwhile, we gots ta share the note that came in from our favorite brilliant (and expatriate) cat, Mike Eggers, from his current perch in London.

Cancer? Come on man, you can do better than that.
Nearly blowing your head off after chucking a burning spear into an abandoned well filled with decades of methane-producing rotting vegetation. That shit is more your speed.
Piloting your Jeep through hairpin donkey trails haphazardly cut into the sides of 500-foot high granite cliffs. Big, ankle-slapping brass balls, that one.
Eating dicey curries in back-alley Hong Kong lucky sailor wok shops. Pure Purdom.
Sorry it took so long to get back to about your latest attempt to buck life's odds. I was just waiting for something with a bit more of an, I don't know..., "Erik edge" to it.
But then, the more I read about the specifics of what the hell this bug of yours is all about, the more I realized just how impressive it all is.
You definitely have my attention now. And Michelle's. And that of our extended tribes. Plus all the love, respect, support and requisite chin trembling and hand-wringing that comes along on a ride such as this.
Now then, and I say this to any kid who's ever grown up wishing they were the secret sixth member of the Purdom band -- it's time we all crowd the stage and rock this shit.
Erik you take lead. That's cool man, that's your spot.
But lookout behind you because we gots your back, Jack.
Eggboy

Today the road begins

(Andree here)

The road is f**kin' hard

The road is f**kin' tough

There's no question that

It is rough, rough stuff.

It's the f**kin' road my friend

But it's the only road I know ...

Well, the D (Tenacious that is) made one teeny error in this case: there are a number of roads Erik could go down, and today he and Nancy go find them out. As he said in an email way too early today, "Nancy and I will have lots of questions mostly regarding how they establish their game plan that they offer me and from where did they compile their information on how to treat my situation.We are already studying other situations similar to mine and trying to find the correct course."

He's still and continually committed to naturopathy as a leading methodology in his treatment. Western traditional methods will be players in there too in whichever way seems best to him. When we know, you'll know. Stay tuned, send good power.

The road is f**kin' hard,

It's also really f**kin' tough,

There's no question that

It don't take no guff.

The road is a be-a-itch my friend

But it's the only f**kin' road I know,

. . . Because I'm talkin' about the road.

Latest on meeting schedules

(Andree here) Just heard from Dad via e-mail as to whom Erik meets when, so keeping you posted:

Erik is visiting the surgeon today for post op. Then goes over to his naturapath for a visit. Tomorrow the Naturapath, Oncologist and one other specialist have a conference amongst themselves to come up with a course of action for Erik. Thursday Nancy and Erik go in to see what all three of these doctors come up with for Erik. Action will be taken from there to what Nancy and Erik feel is in their best interest. If it means going to someplace like Sloan Kettering or Anderson, so be it.

Smiling

(Andree here) Erik and Lyric, celebrating the young lady's 8th birthday this past weekend. Photo courtesy of our good friends Amy and Andy Collen.

Nancy told me yesterday AM that apart from a couple of back spasms, E was feeling pretty great overall. Let's all hold that thought for today as Erik meets up with Drs. Zeff and Taylor to start developing a strategy.

We get e-mail! / Gearing up for tomorrow

To each and every one of you who's dropped a line -- Thank you so much for the tons of good wishes and care. I tell E about every one so he can check 'em out.

Tomorrow he meets with some of his medical team to hear some options and decide on the course he wishes to take. As soon as we know, you will!
Andree

Brynn's poem for Erik

(Andree here) Our sister Brynn asked me to post this, and I know you'll enjoy it. Totally Brynn and totally Erik, and that means good stuff. Smile and cheer at

How I See Erik P.

I like that
you let your kids swear
I do too
Because I don't care

I like how
You laugh at strife
What a great way
To live your life

Thanks for the pep talks
And saying I'm good
Even though I'm always broke
You understood

Thank you for laughing
When my kids are rotten
That's a great quality
Some folks have forgotten

I see a kind soul
In a Viking shell
Who's in the shit
And doesn't feel so well

I see a kid
Who moves too fast
But...I see a kid
Who's built to last

So, take time Erik
and climb this rut
Get that rock salt
Out of your gut

Because...as Jemma said to me...
While writing her own poetry
Without Uncle Erik mooning us all
The world's a boring place to be

Erik Looking Hard on Jaeger's Bike

Hans posting: So, this is yesterday at Erik and Nancy's place...Lyric's 8th birthday. Erik said that he had to look "hard". A few moments after this, Erik was cruising around the house on his new slab... Putting the hurt on the back tire.

Erik's got something to say to all y'all

[(Andree here) Got this in the e-mail just now. ]

OK Folks, Here’s the rub,

Sometimes you pull the short straw and it's your turn to step-up.

It's not what you do, it's how you do it. I have no regrets and I feel well prepared to face this bullshit waste of time and tears.

That sums up my attitude though I don’t want to sound flippant. There is a lot at stake here for my family and it promises to be a challenge that we are not looking forward to. Still, I have to envision a day where this is a memory and I continue with my precious view of life, family and friends made even more clear and intense by this experience.

It is said that it takes and optimist to plant a tree. I plant a lot of trees, but I say life’s to short to plant a small one! I always thought life was running too fast and I didn’t want to miss anything. For many years I have stopped whatever I was doing to go out and make sure to appreciated the sun’s changing light quality at dawn or dusk. I pause and really study Lyric and Jaeger as they play, adventure and grow so I don’t have to rely on a recording to relive their years.

I appreciate how fortunate I am to have wisely chosen my Nancy to help create a pleasant life and to compliment my family. Together, we focus on adventure and challenge not luxury and comfort. This has always liberated us. Nancy and I have laughed about this current situation because it is so strange that it is somehow entertaining. I cannot surprise her any longer. She knows my mind.

Though I think this is the only place I have ever been, I hold up my hands and really look at myself and think “This is a strange place to be”. This is my only inkling of a consciousness that transcends the physical body. I will do everything I can to prolong my presence here and continue working hard to create quality and not settle for mere quantity.

Erik

If I could I surely would,

Kick the ass,
of Father Time.

He stole away a piece of my life,

And he sure ain’t no, friend of mine.

-Ahmet & Dwezil Zappa, “Father Time”

Big Brother Purdom Here.......

All,



By now most family and friends have received the news concerning my little brother. What a kick in the nuts. Erik and the rest of us are wading through the myriad of emotions and information that typically comes at a family that receives news like this. (We know...Pop Purdom is recovered from Leukemia.) But, as Purdom's typically do, we will move past this phase and concentrate on getting Erik the expertise and help he needs.



For all of his friends out there, please send some positive karma Erik's way. He certainly deserves it. I think we have all benefited from knowing him in some way shape or form. What an awesome guy.

More from me later.


Have a drink to Erik.....I know I am.

Sean

logfest 2007

(Andree here) Last summer, trees were macked upon and logs were split and beer was had by a grubby bunch indeed.

Courtesy of our brother Sean, here's the aftermath of Logfest 2007, left to right:

Andrew, Sean, Erik, Dad/Terry, Hans, Andree, Adam B.

the usual suspects

Shawn Walker, Steve Sowards, Dean Paris, Erik Purdom, Adam Baker, Andrew Rotchford

artist: Adam Baker

whom i didn't ask first

Reading get well cards

(Andree here.) That's what Erik was doing when I gave him a ring just before 1 PM. He's really enjoying them, too. He sounds good, voice a little scratchy from having his stomach scoped couple days back (that turned out as well as could be hoped, nothing visually present to give pause).

He's a little sore but it's from the surgeries. He's wearing a pain patch for that, and still sounds sharp. He's thinking about naturopathy and how it's encouraging him to address how this got started in the first place / how to make it not happen further. All very good progressive things to consider.

We're still all getting some stuff organized, so those of you who have asked how to help -- stay tuned, because we will be tapping that when opportunity arises, you bet.

I do believe Erik will be posting too before too long. (Monty Python line) Wait for it. . .

Today's a good day.

Hi, Erik's sister Andree here.

According to my dad earlier, this is how Erik's been yesterday and today:

"Erik is feeling better every day and starting to eat a little more each day as his insides feel better from his surgery. Mom and Nancy are scurrying about preparing for Lyric's birthday party Saturday. I think it will be next week when Erik feels that he should consult with doc Brouns about chemo in conjunction with doc Zeff the naturopath. In the meantime, Erik is taking the various powders and potients prescribed by Zeff."

I hope to get more of the existing picture filled in during the next 24, so stay tuned.