Armed Forces Day 2011

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Still Kicking Ass (Hooah!)

I got my last round of Chemo last week as a guest of the Bone Marrow Transplant Unit at the Seattle VA. It was a very nice place to ride out the suck of inpatient chemo.

My admission for the actual transplant will crank that suck all the way up to 11 and they will get me through. They’ve been doing these here for 30-odd years and nobody is better at it. I’m one of two people being treated in the BMTU that are actually from this state. My living close enough to stay at home virtually never happens, from what I can tell. They have apartments that folks move into just for this program, you have to have a caregiver with you and they really got the whole thing running pretty efficiently from what I can tell so far. It’s not my first party after all.

All things considered, the title of this post is apt. It was a rough run, very rough… With extra twists and turns, just to keep things interesting, amirite? /sarcasm

I got real sick on the weekend and Rachel just dragged my 104.5f/40.3c lethargic old butt all the way through the episode. My fever broke about the time she went home.

Fortunately, the staff was universally awesome. I am more than a handful to take care of these days and they all take good care of me anyway! *snicker*

Speaking of being taken care of, check out the Facebook love I got on this announcement! Verrrry therapeutic…

I recently characterized this as “a swinging pendulum ride” it’s trying to start to slow down… I got extra strength steroids cos I’m such a good little patient, tapering down now. It’ll be over soon.

Then the transplant, then maybe just maybe I’ll get this “cure” these peeps in white coats are expecting. I’m just looking forward to the whole rebooted immune system thing and the resulting energy that I’ve been missing for what seems like forever!

A cured case of Mantle Cell Lymphoma is still a rather rare bird, Campers.

But a cure what I signed up for.

The dice have left my hand… Wish me luck!

Homeopathic Regimen: Check!

Can’t not do it! I don’t even have to believe in it, and I don’t, but I believe in Ben.

And it can’t harm me so…

Here’s the list:

Vaikunthanath das Kaviraj: Ok Lycopodium 200C. First dose dry, next dose in water, as usual[00:15:20]

Vaikunthanath das Kaviraj: Weekly dose of nux vom 30C dry[00:15:54]

Vaikunthanath das Kaviraj: 20 drops of Chelidonium tincture in water 3 times daily, morning, noon and evening.[00:16:23]

Vaikunthanath das Kaviraj: Order from Boiron or Boericke and Tafel.[00:16:34]

Vaikunthanath das Kaviraj: Online orders accepted.[00:17:01] Vaikunthanath das Kaviraj: One more thing. Carcinosin once every 2 weeks in 1M potency.[00:17:28]

Vaikunthanath das Kaviraj: Here is another case I just did.[00:17:30]

Vaikunthanath das Kaviraj: Hi, Dr. K…I’ve just come back from the mamography/ultrasound exam and wanted to sahre the good news with you!!! Thanks to your carcinosin 200c…the nodule is totally gone…”like it never existed”…they had no explanation for it…–nor did I tell them about the remedy I took –on the side– I am ever so grateful!!![00:17:56]

T.L. Gilbert: Very cool![00:18:24]

T.L. Gilbert: how about depression[00:18:27]

Vaikunthanath das Kaviraj: Got that news yesterday[00:18:47]

Vaikunthanath das Kaviraj: Aurum met. 10M once a month, at most.[00:19:09]

Vaikunthanath das Kaviraj: Is also good against cancer, btw[00:19:48]

T.L. Gilbert: I’ll go whip out that credit card… Thx SO very much, Ben. I wouldn’t do this without you.[00:20:17]

Vaikunthanath das Kaviraj: No worries mate. always there for you[00:20:48]

T.L. Gilbert:

Vaikunthanath das Kaviraj: ((bow))

The Countdown Has Begun

Your raconteur got a phone call from Chuck Boyd, the guy who is in charge of my imminent chemotherapy regimen. It was a good call, dude was nice, got lots of operational info…

I’ve decided to spare y’all the details here, but clicking on Hyper CVAD or Rituximab will take you to more detailed info on my planned treatment.

My PICC line will be placed next Wednesday, so I’ll be hot-tubbing frequently right up until that appointment! I’ll be admitted the following day (or a week later) to begin the first of eight five-day admissions (2-3 weeks apart) for each “run” of chemo.

Then I get my stem cell transplant.

*sigh*

 

This promises to suck SO very fucking hard… Chuck didn’t sugar coat his briefing.

I can hang tho. I’ve been through worse, I think.

Our new digs are wonderful! (Pics are HERE, with more to follow.)

Internet and TV are thoroughly sorted. I got a TV card plugged into a Sat-TV DVR so I can watch whatever i can imagine in a window while I do stuff like this. I’m gonna need the distraction (and maybe a sling box rig… No, they got cable at the hospital. I could sideload from here if I get a rig built… Oops! I got lost there for a minute. Needless to say, the room is just about completely set up to a very high standard of geeky utility and slacker comfort. I haven’t had a chance to think x-10 yet eith… OK, I’ll stop now.

I’ll enjoy the home-cooked meals as long as my appetite lasts. (I’ve been selecting the menus! :) )

I’ve been getting a steady stream of concerned folks being all kind and stuff, which is real good for my morale, so keep that coming!

I’m also writing a post, about why I chose to go all “Public” about my cancer, for a good friend of mine in the Bay Area for Love & Trash in the next couple of days. I believe it’ll be going up next week, but I’ll let y’all know, of course!

I hear my hot tub calling…

I’ve Got Some Bad News, Campers…

 

My Neck in Sep10

It’s not like there are any guidelines for doing something like this on a blog; at least, I didn’t find anything when I needed it. So I checked in with Tony Pierce, blogger extrordinaire, and fellow former Chicagoan, for some sage advice about a week ago.

———————————————————

Any thoughts on sharing personal bad news like cancer online/blog/facebook?

T.

–
Todd L. Gilbert,
US Army Retired, R.N. (Ret.), Philogynist, Raconteur, Tech Freak,
Blogger, Photographer, and Wicked Jazz Sounds Foreign Ambassador!

Read “Waking up in Amsterdam!” http://wakingupinamsterdam.com
E mail – [redacted]
Skype Me: agitprop777
Twitter: http://twitter.com/agitproper

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Yikes. Sorry to hear this.

Facebook would be where I’d recommend, since odds are best that the audience would be more adult and responsible. But I’d also try to predict an answer for people asking how they can help. So you may want that as part of the message.

So so sorry to hear this!

———————————————————

Dude… Lookit what I found.

http://articles.latimes.com/2010/apr/19/health/la-he-online-support-20100419-17

I’d been using “cancer” in previous googleations…

That way lies madness!

“Sharing Bad News on FB” caught this really good piece

I just laughed when I saw it was from your paper.

My therapist and I validated using FB, the article is very helpful too.

I’d looked into a site that sets up a walled garden that you send out
invites to. Left me cold.

There’s nothing shameful about having cancer.

Said therapist has also given me a tiny daily dose of klonopin.

Can’t say I’m enjoying it but it’s helping,

Sadly, BHO  (THC concentrate) alone wasn’t able to keep me in the proverbial car on this roller-coaster, but it’s absolute hell on cancer cells!

(Thank god for Washington State’s Medical Cannabis laws!)

Neither is real good for writing; feels like it takes wwwweeeeeeeeeeeekkkkkkkkksssssss.

Chat doesn’t work well either. Needed to do this written out tho.

The prognosis is actually pretty good. It’s a rather rare form (5-6% of cases) of lymphoma. My dentist at the VA here in Seattle found a big tonsil-looking thing during a visit. ENT took it out and I was diagnosed with Mantle Cell Lymphoma (aka MCL). The oncologists have been searching for more, which they usually find.

Except with me.

Oncologists tend to be low-key, right? 1st visit was pretty subdued. (Not quite funereal but…) At the 2d visit, after “staging” (Bone marrow, endoscopies & scans: Oh My!) they’re saying that we’ll be attempting a cure.

I’d asked the attending (looks like Sam Elliott) if he’d personally seen a case of MCL quite this “early” during his long and highly esteemed career.

He said that he had not.

[BTW: Dude trained at Rush and got his PhD at University of Chicago! I'm calling omen... ]

Finding it before it has spread anywhere major takes my case up into the lightning strike/lottery winner statistical realm…

The case has already been presented to the “Biggies of the Brotherhood” of local cancer treatment because there is no “standard” treatment protocol for this.

I’ve been placed in a study to help determine one.

Chemotherapy is gonna start soon (Next week – T.) and it promises to be rough and yes, I will be bald. The goal is to blast away my immune system (and the cancer within) with chemo and rituximab. They’ll then transplant my own cultured stem cells so that I’ll basically have a rebooted and cancer-free immune system.

We hope.

Most of this year will be devoted to this process and recovering from it.

Much like all of the last year was devoted to getting this sick.

Break————————————————-

You’ll notice that I’m writing what I’m gonna say. I gotta get this up
this week or so, but I’m hitting the wall for tonight. I still need
the part about what folks can do. Gonna be real thoughtful about that.
Maybe I’ll rewrite the med references a bit too…

As far as you are concerned, I’d be grateful if you’d be able to check
my copy once it’s done. I’m hoping to avoid the obvious pitfalls. The
story is dramatic enough, I just don’t wanna go over the top and I
trust your judgement on a post more than anyone else I know. Do you
mind?

Thanks for letting me share this. Either way, it’s helping.

———————————————————

Hey Todd,

That is weird that our site had that!

I’ve heard good and meh about klonopin. Mostly good though.

I’m glad you have a good therapist – those are rare.

I think what you wrote is perfect as is. On something like this sincerity is what it’s all about.

And you’ve got that for days.

Recently all I have heard is stories about people beating cancer. Good to see you’ll be part of that magical list.

Rock on my man,

Tony

———————————————————

So, “Rocking on” is exactly what I’m doing.

Wanna help?

Leukemia & Lymphoma Society “Team In Training”

Fight© (NL)

LIVESTRONG

More Follows…

Jack Herer Tribute in Portland

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Scooby snax!

YUM! (mini corn dogs)

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on the train

window seat

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Tacoma

Cool bridge

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My First Seattle Photoset

My bro and I were running around town on a beautiful Sunday afternoon and I was testing out  some new equipment for my camera…

Click on the troll to enter this set!

I’m having to learn how to shoot from a moving vehicle…

The equipment test was a success, you’ll note that my pics are all geotagged! (Just click on “Map” near the shot.)