desperation

Can you grasp at straws in an ordered, controlled manner?

If you can, I think I'm learning how... the hard way. ;)

Let's be honest for a moment. My ability to endure pain and discomfort has grown dramatically throughout this gauntlet, but at the expense of my sensitivity to others as well as Jody's patience and capacity to forgive. The 'perfect storm' that struck a few weeks ago thundered through both of us leaving two hearts nearly broken. What's worse is as the storm passed, the floods came and I dearly wish I were only being metaphorical.

In the last ten days I have had major league diarrhoea that has kept me from work more than half of the time. I'd thought I'd eaten something bad though I had been abundantly careful in choosing what to eat and drink. After a week I visited my gp who now has me taking Cipro to kill off a possible infection. It sure feels like an infection though halfway through the antibiotic now, nothing has changed. In fact, today things seem to be worse... the day after my most recent Avastin drip.

So I look at the Avastin website and see diarrhoea is a possible side effect. Great.

an a guy get a break? Or do I say stop to the Avastin? I've already stopped eating a number of things to avoid upset and the top of the list now is dairy; being stripped of lactase is a side effect of Xeloda. The Avastin was supposed to be a test to see if we could keep the lesions from growing (we will scan on Aug 21st to see) but that gameplan has left me feeling cheated... cheated out of ever being healthy.

I'm tired of being sick; too sick for Cyberknife but not sick enough for surgery. I'm tired of taking chemo but not enough to kill the lesions off before making me feel I'd be better off dead (insert old John Cusack movie clip here). I am God-damned tired of the burning, itcching, blindingly painful hemorroids I get with loose bowels that never seem to firm up. Right now, at least the diarrhoea passes quickly (like lightning) though our washer and dryer have been getting a workout.

I find myself rationalizing all manner of things. They range from stopping treatment so I can salvage some quality of life even at a shorter quantity, all the way to looking for a rectum transplant or some biomechincal device to control my bowel movements. I've missed the ileostomy I had to wear baggies for through the early part of last year. I've found a surgical procedure called a BCIR pouch that would do away with my large bowel in favor of an internal ileostomy of sorts that I'd have to empty with a tube. It sounds like a miracle... it doesn't hurt, people who have them eat whatever they want, they swim, play hockey and football, women with them can have babies, all kinds of great sounding stuff. If I come across any testimonial of patients who have it and race cars...

I'm adding it to the list of things to look into more because having questions is a weird form of hope for me. There is still something out there that might be worth it.

I'm also seeing another oncologist next week; a guy my oncology clinicians have heard of and has a good rep. The irony is -his- name is also Dr. Lee so there may be a little confusion of who's who coming up soon. ;)

I'm not going to feed him what I want to hear. I know I'd like to be more agressive and I want someone to say to me they think they have a plan that kills the disease... not just keep it in check as more and more of my life passes me by.

some explanation

The downside to sharing this way is things still come across very black and white even with the advent of emoticons; body language only so well represented through clever keystrokes.

You guys see me use this one a lot. ;) It's my way of cocking my head and winking to add emphasis to a point I'm making (writing). Unfortunately, I don't have any emoticons at the ready to convey the frustration of the perfect storm that struck this past week.

I reeeeally don't want to go into it here but let me assure everyone I'm not stopping my treatment. The thought crossed my mind and I've dwelt on it before because the plain fact is, I am utterly mortified of what seems to be coming to pass; a life lived in yo-yo cycles of chemo constantly stepping to one side and never getting anywhere. Or worse... slowly being picked apart, piece by piece. I already feel like less of a person, less of myself. That angers me more than I may have let on.

And though I know what matters is how I behave in response to feeling angry, I lose that battle with my self control because the Reality I often see ahead of me is one where there is no hope of ever breaking out. I feel trapped except to stop dodging the inevitable. I'm sorry for saying it, but it is the truth.

This is with me all the time and I know it salts what I say and do. That last blog was barely the tip of the iceberg.

Just do me a favor and pray for me and Jody right now. We need it.

it gets worse

So, 'last post was a downer. Sorry, but this one is too. Feel free to stop reading now.

My CEA is back up. That's a very good indication I'm heading back to chemo and there is nothing I can do about it. I can pray, I can think positive thoughts, I can sacrifice a goat... won't change a thing. :(

Crossed with all of the other crap happening in my life, I am seriously considering stopping treatment. I hate to say it but I honestly do not know what I am still fighting for. This is NOT even close to worth it. :'(

Crap on a stick.

As posted on facebook...

I just got an invoice for outstanding leftover payments to my oncologist. Though there's a lot from Kaiser, they're a tiny fraction of the pocket portion Aetna has left me with. It appears to be just the first quarter of the year... and may allude to thousand-dollar copays, per visit, for the Avastin... that I get every other week... three moths worth aren't on this invoice...

Attack of the Clones is on television, sucking.

The NetApp at work is expressing that same firmware bug from back when I first started; don't know how to/haven't had a chance to fix it.

And it's now raining so I can't take my doggies to the park to let any one of us blow off some steam.

To borrow a meme, FFFFFFFFUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUU!!!!!!!!

I miss you, Brie.

I apologize for the cliche but I wanted to spend just a little time reflecting upon Brie's passing.

I admit I am still angry though I am immediately tempered and comforted by both Jody and Alex's words from those dark days last year. No, my faith comes with an acknowledgement that God's hands are not the only forces at work. Yes, Brie is alright and some day we all will be too.

Not today though. Not yet anyway... but it's coming.

Remembering now scrapes that scab away and it hurts all over again. Yet, whatever the Reason, that Will I've hitched my star to as Perfect, if I really beleive it is True then I'm still here for some reason no matter what I'm feeling now.

Part of it must be to honor Gabrielle's memory and to support her Mom and her brother as my friends.

Through a strange coincidence I've been able to pledge some money to the Kimmel Center at Johns Hopkins; the place where Brie was cared for last year. We thought it was a miracle to have a place with doctors here close to home almost in direct connection with the hospital in Ireland where she first fell sick. I chalk it up to Providence again that one of the editors at a car magazine I subscribe to will be racing and counting laps just an hour or so from home to raise funds for the Center. It was his car and the articles following his build in the magazine that encouraged me to buy the BMW I'm still chipping away at. I've made my pledge in honor of Brie.

I am hopeful to be able to make the race over the weekend of June 20-21st. If you would like to join me, please do not hesitate to ask. If you would like to make a pledge, you can do so at Laps for Life. The driver/editor I'm sponsoring is newly wedded, Scott Lear, the Club Editor for Grassroots Motorsports Magazine. Pledges are per lap for the race which is expected to be between 10 and 15 laps; the race is the most laps within the set time.

In closing, let me say how thankful I am for having known Brie even for such a short time. Let me also ask for your extra special prayers for comfort and care for her mom, Holly, her brother, Alex, her dad, Mark, and those others whom were closest to Brie. We are all reminded of her bright smile and sassy attitude today and though there may be tears left, her smile is still unstoppable... don't even try to resist it. :')

fingers crossed

A quick post to refresh the blog before work today.

Yesterday I went in for a CT scan. I chose to go back to the same imaging facility up at St. Joe's in Towson so I'd have two in a row from the same place. This is me plotting/planning ahead for the news that, sorry Mr. Scofield, but you still have cancer.

I want to say, "eh," but it just makes sense to think this way. it sounds hopeless i know, but the pragmatist in me takes over. I'm happy having a plan instead of just hoping... but that doesn't mean I have no hope. ;)

If I'm still sick, the second set of images from the same lab will give me something useful to show the doctors at Franklin Square. Thinking ahead, that will give them something to compare to in reconsidering me for Cyberknife. If I am still sick, perhaps now the lesions are small enough for them to think they have a stab at them. Bad pun intended.

And if not, I've got all the forms for the NIH study so I'm in position to make a move on that front too.

I know the better analogy is chess, but I don't play chess. Instead, I picture it like finding a slower car ahead but not really having a place to pass for a few corners. I know what I've got and I have a very good idea of what lays ahead. I reel that car in close enough to let him know I want by. There's no pressure; I don't have to shovel him through every corner. It's time to relax a little even in a technical section... and when I get a chance to pass, I'm right where I should be to make it happen. Meanwhile, check the flags, hit the marks, and tap out a little thank you with my fingertips as Patience pays off.


To close today, I'd like to ask anyone reading to pray for Jody today and over the next little while. She's been painted into a corner at work and struggling to meet some deadlines that are neither reasonable nor flexible. It's unfair and she's killing herself to do the best she can but missing the date seems inevitable; the work that needs to be finished won't be done on time and there are technical problems conspiring to further seal the bum deal. She takes a tremendous amount of pride in her work so not finishing is bad enough. Unreasonable customers and management who cannot bend are not helping in the least.

Another milestone

Good afternoon, all.

Thanks go to Tina R. whose comments today jogged me into making a new post. I have a little bit to share, the least of which is today is the last day of chemo! :D

Believe me, I am glad to be stopping the stuff. I don't have any foolish notions of guzzling a gallon of milk any time soon, but I can say I did get to try some soy-substitute dairy product that didn't kill me. Jody paid a visit to Trader Joe's recently and came home with these mini chocolate ice cream sandwiches that are hella good. They're about the size of a deck of cards so they help portion control too which is good because I'm also weighing in (yesterday) at 236lbs.

It's getting kinda bad... first my pants were too big and now it's my shirts!

Yesterday was a checkup with Dr. Lee and we discussed a few things. First up, I'll be getting a fresh CT scan on Friday afternoon to see how well this batch of chemo has done. Desperately hoping for No Evidence of Disease, but I'm a Realist. We shall see.

I'd love very little less in my life to be out of the treatment stage finally. Planning ahead though, we talked about the NIH thang and maybe getting my broken port removed. If the scan comes back and says I need more chemo, we go from there... but we may get a chance to have Franklin Square reconsider me for Cyberknife (which drove my decision to get a second scan at their facility to help grease those skids just in case). If Cyberknife is still a no go, I'm going to pursue the NIH trial. I'd held off on responding to NIH right away out of concern for wasting their time, but Dr. Lee encouraged me to move on it now and let them worry about their time being wasted.

So there's that paperwork to fill out and a ridiculously invasive questionaire from work about my finances that I'm waiting until the very last day to submit. I am finally getting an assistant I think may stick around longer than a month... right AFTER I needed one. I've proven I can do my job... all by myself... working only half days... while sucking down poison pills. Lower case "boo yah."

And that's not all. I've killed myself doing several things lately I wouldn't have dreamed of.

Those of you who follow Jody's blog know she was excited to be a part of the Gatorade RePlay football game between her alma mater, Easton Area High School, and cross-river rivals Phillipsburg. I had a good time too but was really hurting by the time we got home.

I chipped away at stuff around the house during a weeks' worth of rain until mustering the courage to try mowing the grass. That was a big mistake and I only got a fraction of it done. My allergies reminded me that I spent most of last Spring cooped up in the house safe from all the pollen... :a-choo!:

Indoors again and trying not to let sniffles turn into an infection, I put my head down against our home network and pounded out a correct rule for the firewall to let Jody's VPN pass through. She is muuuuch happier now and I no longer have to duck underneath a hundred-foot long ethernet cable strung up in our foyer and living room. ;)