Did anyone get the plate off that truck?

I knew I'd been slacking on the blog, just not by how much.

It's been a hellacious few weeks with far more lows than highs, but let me at least get one of those highs out there. Within the next few hours, I will be an uncle. :)

My bil called me just as I was about to sit down for drip number three today. I hesitated to answer because I was already depressed so I quickly took his call and explained I was at the oncologist. He told me he and Joanie were on their way to the hospital and that she'd be induced today. It must have been about noon their time, but it really cheered me up. I needed a few minutes to dry my eyes but the IV and the drip went nice and easy after that.

It was just the kind of news I needed after these last few weeks. I know it's not going to buoy me too far though but I'll still enjoy it. I'm not even sure who's reading this any more so I'm kinda doing this for my own therapy.

Yeah, drip number one pretty much crushed me. I was already defeated and it did not help that work had become such a strain. You see, when I'd resumed working I'd done so with the express direction that I'd be working with someone. My customer needed a full time person with my background but I was only available half-time. They okayed hiring a second full-time junior person and I'd be responsible for training him/her... kinda like training myself out of a job, but it would be honest work again.

The first guy they hired after I'd phone interviewed him and was confident he was a good guy. He quit after a month when he got an offer for more money and a muuuch shorter commute. I couldn't fault him for it.

The second guy they hired came on board as a total surprise. He showed up the day I was told he'd been hired... I never even got to see his resume'.

I could go on and on AND ON about what a complete ASSHOLE this guy was, but I'll let my rare use of such foul language speak for itself. I could sympathize with the guy if he had even the slightest work ethic, but he clearly felt justified not doing a single thing the entire time he was on my task. It wasn't the job he'd interviewed for so he didn't have to do it. An honest person would have done what was asked of him even while leaving no stone unturned to find a better job, but not this guy.

When I had finally had enough and began documenting his disappearing acts, refusals to work, playing games and watching Internet videos on government computers, and SLEEPING at his desk, it then took me nearly two months to finally get him fired. In his final two weeks, I found new and more creative evidence that he was sabotaging the lab, making deliberately wrong configuration changes to cause things to stop working.

Thankfully I was able to interview and hire a competent replacement. Even if he is not as skilled as I'd like him to be, he has a good ethic and is willing to learn new things. In his first three weeks alone, he's been a tremendous help as the chemo and the side effects have mowed me down like a runaway truck.

I am trying very very hard to stay ahead of my diet and fluids, but the smallest mistake costs me for days. I cannot recover fast enough and that drags my spirits down even further. I won't say I'm on an upswing now because I felt better a few days ago and know, with today's new round of pills, I'll be back down again pretty soon.

I just need to get through to the middle of May so this batch will be done and I can get a break to go see my niece or nephew even I won't be able to hold the baby. :'(

insert sound of balloon popping

Sorry, gang, but post #101 isn't going to be bubbling with joy.

I got through that CT scan on Friday the 13th despite the completely humor-challenged radiology tech who administered the procedure. I'm still sporting a bruise from her IV ministrations, but it doesn't hurt. 'Got home from Towson just in time too... :whew:

The report went to Dr. Perry with the Cyberknife raditaion team who took it, along with my entire case history, back to his gastro disease board for a second, more detailed look. Unfortunately, they feel there are just too many spots still showing to make Cyberknife a good recommendation. even though they're not glowing on the PET scan from last month, they feel chemo is the better approach. If things are squashed more in the future, Cyberknife might be a good choice.

This wasn't what I wanted to hear though I fully understood it was possible, if not the more probable outcome. Still looking for the silver lining though, it also means the diseased areas are too small for surgery. That clicks with what Dr. Grasso said he observed through the laproscope waaaaay back in November of 2007. Nonetheless, I spent the majority of my afternoon in tears and generally depressed. I manned up and called Dr. Lee's office to advance my followup with her from the 3rd to tomorrow, the 20th. There is now no reason to be postponing chemo and I want/need to get it over with sooner rather than later.

By my reckoning, another twelve weeks sees me finishing in early to mid May. I absolutely HATE realizing that means another truncated summer of track days not to mention a hit to my disability income. It will have been a year now at the end of this month.

What I hate most though is the absolute dread I feel toward dropping those Xeloda pills AGAIN. They just drag me down so badly. I don't want to stop working, especially now that it looks like I'm going to get a good teammate to work with. But I know the pills are going to drain me, upset my stomach, interrupt my already fragile bowels, and generally make Life miserable. I don't know what to do. :'(

100th post...

I couldn't think of a clever title for this post other than to notice it would be #100 on the list. When this started, I naively thought I'd be in the hospital for a bit getting surgeried (tm), miss a few weeks of work, and then all would be good again. I never thought I'd be making a hundred posts to a blog or enduring this gauntlet. Yeah, I'm a little depressed after all this time but don't go rushing to dial 911. I've said it before that if someone told me all the details of what Life would turn into after this, I might have seriously considered doing nothing.

But I did something and I'm pretty much committed to seeing it through now. It'd be one helluva waste to have suffered this much and then cash in my chips early. but that doesn't mean I can't try to do something to make the rest of the ride easier.

Which is why I've been on the edge of my seat with the Cyberknife peeps. As I posted before, it might be an applicable therapy for the metastases I still want rid of. If I'm lucky, I'm a good candidate and maybe won't even need more chemo. I might be an okay candidate and get to mix the two. But I'm realistic and know I'll be back on the chemo if Cyberknife just isn't for me.

I've been unsuccessful in squelching my hopes for consideration though. Even over email I'm vibing a little too much; so much so that I got a 'calm down, be patient' kind of email back the other day after offering again to share all my CT and PET/CT scan images if they were needed.

I got a phonecall from one of the radiation oncologists who was looking over the documents and images I was able to submit. He wants to share them with some other doctors and get a larger consensus opinion and asked if I'd be okay with that. Of course. I concisely listed the doctors I've seen over the whole saga and emailed them to him today and will wait, patiently, while the chew on my case a little while longer. I did explain that Dr. Lee had given me this month to check out Cyberknife and that we're in no hurry. I closed with an acknowledgment that I'm not looking for any shortcuts but am also interested in less discomfort if an alternative treatment might mean dead lesions without a dreadfully ill Sco.

So, please pray for patience for me. :]

:D part deux

If I had told someone, anyone, what I was going to do, they probably would have restrained me or very seriously admonished me.

It needed to be done though. And I did take a break here and there, but I did my part and am happy to have helped.

We got our first ice storm of the winter on the tail end of a little snow. You mid-westerners will warm with laughter at the thought of less than an inch of winter seizing the machine of industry here. I still do too. But when it gets glazed over with a quarter inch of ice making the whole world look like a donut, it does get hard to get around. It had to go.

I instinctively wait when there is ice in the forecast. Years of experience have taught me it will be MUCH easier to get rid of with snow underneath than clearing anything and letting the ice form on the ground. If there are clear skies forecasted afterwards, even better. Let Nature help!

Of course, the day after a 'scope and like nine weeks off the poison probably aren't the best conditions for lots of shoveling, right?

eh. Like I said, I did take breaks and I had help too. I also know from experience that shoveling by yourself sucks. If you have a friend, a neighbor, your dad, out there with you then it goes -much- quicker. A few of us chipped at it off and on over a few hours mid-day and the result is a nice clear street this morning instead of the slip-n-slide of death we started with. :)

And the strange part is, I felt good. For sure I got tired and way sooner than I used to, but I recovered with a little rest on those breaks and made three sorties until the whole drive was clear.

I need to share this with Dr. Lee on Friday and ask her opinion about Cyberknife.

For those not aware, Cyberknife is an extremely tight-focus radiation therapy. The beam can nail lesions as small as 1mm. It can track what it is aimed at killing even though a patient is breathing. There is some tailoring of the system to each individual patient and possibly small metal markers to place near the therapy sites, but the recovery time is far less than other radiation oncologies. Recovery compared to chemo is not even on the same page because only the lesions are targeted, as opposed to poisoning the entire body. Killing just what's bad or slowly killing the whole person hoping what's bad dies first?

I also want to get her thoughts on a theory I came up with about chemo and fat.

From what little I know about the liver, its job is to nab extra sugar from the bloodstream and convert it for storage as fat. When the body needs sugar, the liver takes care of retrieving fat and putting the sugar back into the blood. I also think I have it right that fat is stored in a LIFO type of system; that's Last In, First Out for you non-dataflow personalities out there. In other words, the youngest fat you put away is the first to go when you need energy (or are trying to lose weight)... kinda like the last box you put in the moving van is the first one you take out when you get to your new house.

From what I know of chemotherapy, it works because it looks like sugar. Cancer cells are dividing and signaling the body for food and, as the chemo floats by, they eat up anything that looks like sugar. If that happens to be the chemo, the cancer cells die. We chemo patients feel lousy because our healthy cells eat the faux-sugar and die too. Bummer.

I got to wondering if chemo is treated by the liver just like sugar? Is excess chemo stashed away as fat just like excess sugar? And if the newest fat is burned first in times of need, does that mean chemo-fat gets tunred back into chemo???

If so, then I think there may be a way to hasten chemo recovery; lose fat.

Notice I didn't say lose weight.

This has worried me for a while too. It is well established that adding muscle to the body is a sure-fire way to increase metabolism and lose fat. The more muscles there are, the more they need to eat. But with chemo floating around killing anything that eats it, new muscle cells DIE, and I've been told it hurts. A lot.

So, if I'm right, how do we burn off fat to get rid of stored chemo without adding too much muscle or suffering a lot of pain? My first thought is perhaps some sort of blood test to see if there is chemo still present. I don't even know if that is possible. Ideally, once the chemo isn't showing up, muscle building can safely begin.

We shall see...

:D

well, after the horror of last night's prep, today's 'scope was a breeze. I had to get an IV and repositioning a piece of tape hurt worse than the needle going in.

Better news than that was a near sparkling clean report form the colonoscopy. Dr. Grasso took plenty of pictures and provided a map/legend of where the pictures were taken so I can share them with Dr. Lee. One polyp was found and removed. It was less than 5mm and gave no argument. Otherwise, the prep had worked well and everything looked great... giving no more weight to the PET scan analysis of "consistent with disease."

Dr. Lee and I will talk things over on Friday. I'm going to see if there aren't some more focused therapies or maybe trials that need volunteers to put the attention right on my little liver lesions. Say that five times fast! If there is something out there, I'd like to go for it. The chemo wipes out all of me in an effort to get these tiny little bastards. If we can zap them, and just them, I think I'd like to give it a try.

Gotta go for now; I'm due for a haircut. Meanwhile, I keep seeing Feedjit hits with searches that resolve to the blog or past entries. If you're one of those searchers and you need advice, my experience, or just a friend who's been where you're heading, please do not hesitate to comment or email me. I'm here to help!

do something

Like a zillion others, I too watched the Inauguration on Tuesday. I'm not going to express any sort of opinion other than some disappointment at the 'personal resonsibility' message of the President and the irony of the National Mall left looking like a landfill. It was a great day, a cold day, but pick up your trash, people!

On that note of responsibility, I want to toss out a challenge to each of you.

You see, I'll be getting a colonoscopy next Tuesday morning. We need to rule out the possibility of any new, unwanted growth in the region my most CT and PET scans have kept being reported as 'consistent with disease progression.' Dr. Lee wants to be sure. Dr. Grasso feels (literally, ahem!) the scar tissue is there and possibly still healing. Only eyes on the area of concern will give us answers.

That's where you come in. Metaphorically speaking!

I'd like to challenge you to take some personal responsibility for your health. If you haven't already, I reeeeally want you to get up to speed on your own family history of cancer or other chronic/hereditary disease. If you're a child, ask your parents. If you're a parent, make time to talk with your children.

As I've said before, the discussion doesn't have to be some dramatically urgent shoulders pushed up against a wall Hollywood movie moment. Just ping your loved ones and ask for some time in the near future to sit down in a quiet place and have a little chat. You need to know... they need to know... loving one another means gently broaching these tender subjects. The awkwardness can be defused with a little bit of a business approach and a lot of caring for each other.

And when you get informed, do something about it. Had I known I probably had an elevated risk for colo-rectal cancer, I would have gladly sought to be screened for Lynch Syndrome. That simple blood test may have sent me in for a colonoscopy or other exam/tests well before I developed symptoms or spent months thinking I was just eating poorly or needed to get into better shape. It could have headed off this entire process of the last seventeen months and kept me from dreading the next three.

Eh, I say dread, but I know I'll get through. I'll feel crummy and I will fail in several ways, but I'll do what I have to do.

But you can do something, now, and that's what I want to encourage. i want to save you from the consequences of putting things off, denying a problem, or ignoring an unpleasant possibility. The earlier you know, the better! No matter how uncomfortable it may be today, I guarantee it will be much worse tomorrow.

Lord willing, you are healthy or at least informed of what to look out for. With that, please consider helping someone else out. These are selfish days; times that need the restoring power of helping another person even if from a distance. I am very excited about the things the Stand Up To Cancer (SU2C) organization are doing. I know there are walks, runs, rides, etc for people to get involved in. Even the car guys out there can turn laps in BMW's for the Komen Foundation and help conquer breast cancer. All you need to do is look around for an opportunity... and then be brave enough to sign up.

Finally, though it does not feel like doing anything at all, you can pray. No, it doesn't feel like -doing- anything, but it puts your heart in motion. It is both the least effort and the most commitment to just quietly ask for the well-being of someone else. It may hurt. We think we get so much more out of putting our hands on something and fixing it, but the truth is there is so much more in putting our hearts into caring. Go for it!

there's no place like home... there's no place like home...

Being married to Jody is rubbing off.

You see, she has this ability to absorb bad news and bounce back. I hate to be sharing this today, but we learned yesterday that I'm not out of the woods yet.

No one wanted to hear otherwise more than me. I held it together and was able to figure out the next steps. The facts are though, the metastatic disease just hasn't been done away with yet and I will have to go back on chemo in the next few weeks. We're going to go for another 3 month series but this time we will cross the Xeloda with Avastin to see if we can both kill and checkmate things out of my system.

It was tough to take and both Jody and I spent the better part of the day stunned, teary, and contemplative. The truth of the matter really is though, I'm still in the fight. I'd like to be out of it and I'm beyond ready to be done, but I'm not quitting. I know what to expect and though it doesn't please me, I'll push through.

Today, I had to take care of business at work. I got a curveball that helped firmly engage my brain and take my mind off of the inevitable that I'll be taking care of arranging today. When I got home I cautiously browsed the PET scan images on the CD Dr. Lee let me take home...

Instead of making me feel worse, I actually brightened up a bit. Don't get me wrong! It's kinda creepy looking at quasi-transparent images of yourself; especially when you not only know it's you but you can see it's your own body, right down to your own face! I looked for the four spots on my liver and the spot on my lung where the tracer shows lesions...



I could only find three, really. And that was with playing with the colors of the images. I'm not sure Dr. Lee knew how to use the little browser program that came on the CD because she showed us just black and white images and had a hard time stopping the animation. Maybe being a geek is helping me consume this stuff a little easier? I admit, seeing my scan images spinning and morphing like an old Peter Gabriel music video is kinda cool. Bonus points for spotting the Wizard of Oz reference. ;)

The report had comments about tracer showing up in my vocal cords, rectum, and still in my right lung. But I was in between two very sick weeks that required antibiotics that did nothing for my sore throat. I was also, um, fighting very loose bowels that morning. The analyst reported that I said I'd eaten nothing for fourteen hours though my metabolism was sparking off uptake all over that could have triggered false positives in the scan. The liver spots though, they're the biggest concerns... and they're not big enough to make surgery worth my while.

So yeah, though I didn't get the all clear yesterday there is a silver lining. There has been tremendous improvement over my initial diagnosis; the primary tumor is gone, CEA is now down to 2.8 from a high of 19, there is activity in the places noted ever since the beginning but it is on the run.

I have always been bigger than others and need more medicine when I get sick or a headache. When the bottle says "4-6 hours" that always meant 3-4 hours to me. Thus, I'm not surprised. I'm not thrilled, but I'm not surprised.

Before I get back on the poison, I will have to have another colonoscopy. This has always been on the horizon and is warranted now to rule out the tracer showing up down in the surgery site. As neato as the PET scan is, it is still high tech holistics. A 'scope will put eyes on the problem and allow for a biopsy to be taken of anything actually seen by a doctor.

I also need to have my port checked out. The last two flushes haven't gone very well and I'm worried it has closed up or otherwise quit functioning. It had been getting accessed every other week for a large portion of last year but, since July, it was just every month or so to be kept in good working order. The Avastin I'll go onto shortly goes in intravenously and, as always, I'd prefer not to needle my arm.

I also need to open a line to my new health insurance company, Aetna. I will dearly miss Denise at Kaiser, but I had little choice... Lockheed dropped Kaiser. But I picked up the Total Choice option with no referrals required, the exact same out of pocket premiums as the HMO, and $500 from the company to use toward the first $500 of any out of pocket expenses I do rack up. Not too shabby so far. I just want to make sure there is someone on my side as we try to finish this fight.