no test more than we cannot pass

Peter wrote to the Church at Corinth and said it this way, "No trial has overtaken you that is not faced by others. And God is faithful; He will not let you be tried beyond what you are able to bear, but with the trial will also provide a way out so that you may be able to endure it." This is something I believe and was the first thing I grabbed onto as Truth the very day this gauntlet began. (1 Cor 10:13)

And I shake my head and wonder how the heck I'm going to get through this.

I'm not. Well, not alone anyway. ;)

The news from Josh and Joanie was uplifting. The details came in steadily that I'd become an uncle to a little baby boy. After holding him and spending time with him, Joanie and Josh named him Simon. Calls here and there to my folks and Josh gave me little boosts all weekend. Monday arrived and Life kicked back into gear.

My assistant, the guy I really really needed and was so happy to have finally brought onboard and begun sharing work with, gave me his two weeks notice yesterday. I really couldn't blame him. He'd been actively seeking an assignment when I came calling. Through a breach of proper notice, he was offered a contingency job elsewhere but still within the company. It would have been, like a broken record, a shorter commute and more money for him, just like my first guy. He got bullied into staying on my task, if you ask me honestly. So hearing that he would now be leaving for a new company altogether came as absolutely no surprise.

I issued a tactfully muted 'I told you so' to my management as I now have to interview more candidates less than a week before the pressure cooker starts. I have back to back to back classes needing full support all the way through the first week of July. I'll be off the chemo halfway through it, but also finishing the chemo half way through it... ifyaknowwhatImean [/Vern]

But this isn't more than I can handle. Um, yeah. Thanks for that. ;)

The truth is, when my last assistant was here, or rather the lazy bum who was sitting at his desk, I was doing all of the work. It was getting done on just my limited hours and with my somewhat rusty skills and cloudy head. Yeah, I'm feeling the chemo more and more as we go, but I am done with round three on Wednesday and halfway through the forest. It might be tough, but I'm not scared... I honestly think I could live without an assistant. It's not like I'll have much free time to train anyone until July any way. I need to be very discerning in the next few days as I am or am not able to interview new peeps.

Shifting gears completely, please say a little prayer for me as I've been in touch with the Cancer Center at NIH. My loving neighbor Melissa sent me a news article on a series of trials for a new procedure aimed at treating inoperable liver cancer; specifically that which has spread from other tumors. I drilled through and found the NIH links and left a voicemail today to see if my case is one they may need volunteers for.

It doesn't sound too scary, but it also doesn't sound like a breeze. I'm also concerned that it may cost me a fortune. That would suck because I feel very strongly that these trials may be a way I can do something good by helping the research along and maybe giving someone else a better chance in the future. My guess is that they'll want my history, yadda yadda, and we'll go from there.

- Sco

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!