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I’m no good at this

Hello all, can’t believe i let 2 months slip away from my latest update…  it appears I’m not built for blog-writing. Blogs are for people who have an urge to share something on a fairly regular basis, and I think that’s where I’m failing. Not so much on the sharing something part, as it appears things happen to me almost daily. It’s more about the urge to share that I’m terrible at.

Now, I’m not walking around going “oh, folks don’t need to hear about this part of my treatment” because I know that’s important news to my friends. I do, however, seem to have a hard time sharing information via blog. Not like I’m a recluse, but I do feel like what I usually have to share is not the lightest of news – I mean, we are talking about living with Stage IV cancer here – and I just feel like a downer sometimes.

While we’re here, just a little update on my progress: Started taking chemo pills this month in place of the day-long infusion I was undergoing before. I like the pills much better, I take 2 weeks of them and then enjoy a week off of them (I’m in that off-week now). The pills are a lower dosage so the side effects are really mild, if there are any; I have yet to discover them. So I’ll take some more rounds of these pills, then check how well they’re doing with yet another CT scan in the upcoming months. if they work like we think they should, this could be a manageable long-term solution to keeping the tumors at bay. Until then, I’m enjoying the spring as I wanted, feel generally normal, and pass the time watching the hair grow back on my head. I still look like a mangy dog at the moment but at least the hair fairy came back to grace my chrome dome again.

So there’s not going to be much here after this post (not like there was much in the past 2 months before it), I just don’t think this is right for me. I dislike talking about myself in a blog-type situation but I’ll happily answer any direct questions anyone might have. Stay strong, thank you as always for your healing thoughts, and get outside and enjoy what’s left of spring. Feel free to hit me up if you have any other questions, I like to talk to people – just on a more personal level.

Love to all,
e

The 7 habits of the highly infected calf

Greetings! I’m out of radiation therapy (for the moment), and I’m here to tell you that it SUCKS as bad as chemo. My doc hit that left lobe hard. Like so bad I ruined my own week-long vacay over it. Almost immediately after the procedure I started feeling not-so-good and the spot just below my sternum felt like it got set on fire. I thought I was managing it all right before I traveled to see family in Hilton Head last week, but it was quickly apparent I had no control over the pain and pressure I was enduring. I couldn’t really eat, I could hardly sleep. I spent pretty much all day last Monday in the ER (funny how I always seem to visit those places when I travel now) where I got nowhere except for getting a nice prescription for narcotics. Never was I so happy to return home from a week-long vacation at the beach. That’s messed up, yo.

So I was able to ‘turn the corner’ after being home over last weekend, thank goodness for Christine’s chicken noodle soup. I’m out of pain now, almost 3 weeks after the procedure, and can eat almost at full capacity once more. Which brings me to my next hurdle: increased food coming down the pipe means that tumor that is STILL in the colon, the one that started all of this, is doing a fair share of blocking outgoing waste. I swear if Virginia Tech’s offensive line could block this well, the pass protection alone would keep us in the Top 25 in the AP poll.

Today I had meetings with the doctor who did my theraspheres procedures as well as my oncologist, where I stated my desire to so SOMETHING about this tumor in the colon. Basically at this point there are 4 options:

  1. Hit it with more chemo. it responds well to this tactic but there’s the widespread destruction that chemo does to everything, not just that tumor; and it doesn’t eliminate the tumor in a short amount of time, it just shrinks it.
  2. Hit it with radiation. The main issue here is where the tumor is located, because if i’m going to get hit with localized radiation I want it to be pointed RIGHT AT the thing, and where the tumor is presents some potential movement within the colon to the point where it’s kind of a moving target, and I definitely don’t want to zap something I shouldn’t down there. Also unsure whether this would just shrink the tumor or get rid of it, not interested in just shrinking down at this point.
  3. Colostomy. Basically bisect the colon above the tumor and shunt it to a permanent colostomy bag, leaving the tumor and everything below it to be unattached. While not ever needing to use TP again is attractive, having no exit strategy for the tumor is not desired.
  4. Bisection and reattachment. My preferred treatment, it requires taking the entire tumor and just enough tissue so that they can reattach everything and make me whole again, cancer free (at least down there). There will probably be a lot of stress on the suture site, as my colon will want to move around against a fixed ending at the bottom (near the rectum) and could cause complications that may be in my best interest to not have to deal with.

My oncologist wants to get as much info in the form of another CT scan next week so he can present my case to his bullpen of doctors to see what they think is the best bet going forward. There’s no easy choices; I asked my oncologist straight up what he would do if it were him and he just stared at me, searching for his decision, for a good 20 seconds. (He hesitatingly chose #4 as well.)

We shall see what the next week holds, and what my next steps are going forward. I’ve been low energy lately but am finally finding my 2nd and 3rd gears easier now. God I need a vacation from all of this.

Every day I wake up we drink a lot of coffee and watch the CNN
Every day I wake up to a bowl of clover honey and let the locusts fly in.
Lobsterbacks attack the town again
Wrap all my things in aluminum
Beams of darkness streak across the sky
Pink rays from the ancient satellite

Every time I look out my window same three dogs looking back at me.
Every time I open my windows cranes fly in to terrorize me.
The power of the Holy Ghost
The power of the Holy Ghost

Shadow of the New Praetorian
Tipping cows in fields Elysian
Saturnalia for all you have
The seven habits of the highly infected calf

Swan diving off the tongues of crippled giants
International Business Machine
Choking on bits of barley bread crumbs
Oh this burning beard I have come undone.
It’s just as I’ve feared. I have, I have come undone.

Bugger dumb the last of academe.
Occam’s razor makes the cutting clean.
Shaven like a banker, lilac vegetal.
Break the glass ceiling and golden parachute on down.
The power of the Holy Ghost comes to town.

Shadow of the New Praetorian
Tipping cows in fields Elysian
Saturnalia for all you have
The seven habits of the highly infected calf.
The seven habits of the highly infected calf.

Switching therapies

Here’s the summary from last week’s CT scan :

Impression:

  1. Stable to slightly decreased multiple hepatic metastasis.
  2. Previously identified sigmoid malignant mass remains less conspicuous.
  3. Stable appearance of probable gallbladder metastasis and the gastrohepatic lymphadenopathy. Gallbladder ultrasound can be used for further characterization of gallbladder findings.
  4. No significant free fluid, decreased from prior examination.

Basically – if you don’t feel like googling – the tumors are shrinking more though not as much as when my chemo load was heavier. Colon tumor is being a good dog. Staaaaaay. Bit of something on the gallbladder, but whaddya gonna do. I’ll knock that one down too.

I hope I’m always this pleased to be reading these scans. So I took that news into the Memorial Day weekend, spending some much-needed time at the beach with good friends. I burnt my feet and toes but I could only feel part of them, so that’s a plus.

And the acne is back on the face, because they switched my one bag of chemo once more, back to good ole Vectibix. I guess I’ve been on basically on ‘maintenance chemo’ since they knocked me down to one bag a visit, which has been at least late-April, I believe. While my oncologist would be worried if this was the only progress from taking my full-on 2015’s style chemo load, my small progress was due to something, perhaps the weak chemo, perhaps something else. I was comparing this scan to my first one and the largest tumors I have now are smaller than the smallest ones measured on the first scan.

At any rate, tomorrow morning I go in for the first procedure, the mapping of hepatic blood flow. Wait till they get a load of my angular blood vessels!

Thank you all for your energy, it’s keeping my feet moving from that block of chemo. I was bushed after that, hopefully I can stand up to that ‘maintenance chemo’ a little better for a while longer. But for now, I’ll glow in the dark like an Yttrium-90-laced firefly in the summer night. I love you all, ecstatic you’re here with me.

“We are the big animal now, shaking the life out of the smaller animal, and he must be given no rest, no chance to recover.”
– Winston Churchill

I look 51 and seven-eighths

It was my off-week from chemo this week but I still felt fuzzy until Tuesday night when I saw the video at the end of this post. Since then, I’ve been enjoying loads of energy — 100% here. I’m sure most will not watch this one if they didn’t watch the other video I posted before but I will tell you it got me going again, so it must be good for something. So embrace it for what it is, and participate in the experience, or just take my word for it. The video has hyenas and a Lady Gaga look-alike, so it can’t be that bad.

the energy comes at a good time, as I’ll be working from Nashville next week at my company’s annual tradeshow. We have Martha Stewart there, as well as Scott Galloway. I’m a fanboy and i hope i get close enough to him to lick his bald head next week.

Speaking of bald heads, my chemo regimen continues to wreak havoc. Every time I run my hands thru my hair I get a shower of hair leaving the premises. It’s a horror show when I wash my hair. I’m actually surprised I have any left, but it won’t be long when I’m not surprised. I realize that I should not be complaining, especially to the male members in my family and Scott Galloway, but my point is obviously that when something you perceive as being normal is suddenly not, it is disturbing when it happens.

And the acne… it popped up during my first infusion back in late January, and it’s lingered ever since. We’re over a month and every time I get another dose of chemo I’m going to get another faceful of the stuff. I keep reminding myself, it’s just temporary. But everything is temporary when you think about it.

See you next week, I’m off to eat Hattie B’s hot chicken in Nashville.

Eh Fatty Boom Boom
Hit me with the Ching-ching
Not fokken thinking, dolla eye twinkling
Just a bit of junkie
Let’s not get too funky
Oh oh oo oh

Hold up

More delays.

“The computer we use to perform segmentation on MRI data sets is down. It is not under contract, so it may be about a week before it is fixed. I can give you abbreviated liver volumes Monday or, if the patient’s treatment permits, the full volumetrics once the computer is fixed.”

My doc wants to wait until things are fixed before we proceed, which I agree with — no need to guesstimate how much radioactivity my liver can take, right? So now we gotta wait till someone fixes a laptop before I get a start date.

I can’t catch a break with this procedure. Feels like I’m never gonna get treated sometimes.

 

A Postscript

I’ve been told I’ve inspired a few people with my attitude during this journey; I wanted to share videos of a couple of people who’ve inspired me… these individuals are amazing. Keep strong, friends.


(Sara passed away 2 weeks after this video was recorded.)

 

MRI Findings

Had my MRI first thing Monday, here’s what the findings look like:

Findings:
Limited views of the lung bases demonstrate no significant pulmonary opacities. No pleural effusions.

The liver is normal in size and contour. Numerous hepatic lesions are seen. The largest lesion measures approximately 2.1 x 5.2 cm in segment 2 (series 12 image 45), similar to recent CT. Lesion in segment IVb measures approximately 2.6 x 3.8 cm (series 12 image 59), similar to prior exam. Lesion in segment 5 measures approximately 2.0 x 2.3 cm (series 12 image 81), similar to prior exam. There is a minimally complex cyst in segment 5 measuring 1.1 x 1.5 cm (series 12 image 87), similar to prior exam. Numerous other smaller lesions are identified throughout the liver, some of which are not definitively seen on prior CT. While lesions are better visualized on MRI, differences in lesion size and number are likely related to differences in imaging modality. The portal and hepatic veins are patent. There is no intra or extrahepatic biliary ductal dilatation. The gallbladder is present. The spleen is normal in size and appearance. The pancreas is normal in appearance. There is no peripancreatic inflammation. The adrenal glands are normal in appearance. There is no pelvicaliectasis. There are no suspicious renal masses.

There is no abnormal bowel dilatation, and there is no focal or diffuse bowel wall thickening. There is no free air or free fluid in the abdomen. There is no retroperitoneal or mesenteric lymphadenopathy. The abdominal aorta is normal in caliber. The aorta and the central aspects of its branch vessels are patent.

There are no aggressive appearing osseous lesions.

Impression:
Multifocal hepatic metastatic disease, similar in appearance to most recent prior CT. Differences in lesion number and size are likely related to differences in imaging modality. Recommend attention on follow-up exams.

I can’t go into analysis on this, as it appears they just got a better look at all of the lesions in my liver. Probably looks like a minefield in there. At least that seems to be the extent of my issues, nothing else is going on in me, I can take some sort of relief in that at least. I can also take some comfort in knowing that the one organ we humans have that can regenerate, is the one they need to cut out.

“So I got that going for me…. which is nice.”

Ironically the damned organ that started this whole mess (colon) looks and functions as it’s supposed to now, and is of secondary concern. Just figures. Gunga galunga.

taking care of bidness

Went to see my liver surgeon and the oncologist this afternoon and the results from the first round of chemo are just so encouraging that they decided to forgo surgery and schedule me for another round of six chemo infusions. Yay.

The thought is that i can continue shrinking these tumors to a point where my left half of my liver could be saved with minor surgery instead of going in today and taking the whole half out.  There’s a big mass right beside an artery that runs through it which could be a lot easier to deal with if it were just that much smaller.

Seeing the print outs of my recent CT scan was a lot less scary than seeing my initial state back in September and comparing the two was very encouraging to say the least. So my recent CT scan got canceled as well as my upcoming consult with my colon surgeon, because I don’t need to see him quite yet. He’s already tattooed my colon where he needs to cut in case my ‘mothership’ disappears altogether, so he’s ready to come along for the ride whenever the liver surgeon is ready.

Initially I was bummed for not going under the knife sooner rather than later, but since I continue to drink chemo like it’s slightly dirty dishwater – and get roughly the same side effects – I am not discouraged at the prospect of having six more infusions before surgery commences.

My oncologist is going to throw another bag of chemo into the mix – guess I’m just not spending enough time in the clinic – so the treatment is going to get more aggressive but I can handle it. TCB in a flash, baby.

TCBRINGsmall

 

So I will have to look forward to surgery sometime in the spring. Cancer takes its time to die, I guess. I respect that.

Happy freaking new year

I decided i’d at least try to finish off this year with my take on what i’ve learned in the hopes it benefits anyone reading this. For me, 2015 wasn’t bad for the first part and then, it was sort of stressful… but overall it wasn’t bad. the last 3 months taught me some serious lessons, stuff i would not have had the opportunity to learn otherwise. And when it comes to adversity, you want to take something away from it, right?

Things I’ve learned:

  1. Cancer is not as scary as I thought. It doesn’t hurt, at least mine doesn’t.
  2. Don’t read what the cancer prognosis numbers are online because they don’t apply to you.
  3. There’s a lot worse cancers than the one I happen to have.
  4. The force of visualization should be used for healing.
  5. The color of the ribbon for colon cancer is royal blue.
  6. chemo is wacky crazy stuff, messing with your skin, muscles and your stomach.
  7. Silver nitrate is something not to put in your nose. At any time of the day.
  8. Don’t let me be awake with any procedure that ends in ‘scopy’. I need to be asleep when you lube that tube.
  9. Chemo infusions cost a crazy ass-load of money each visit. like 5 figures crazy.
  10. Chemo side-effects accumulate if you don’t have enough positive energy to counteract it.
  11. Don’t get cancer unless you have a good healthcare plan.

Things I already knew but needed to be reminded of it:

  1. I’m a lot stronger than I thought.
  2. I have a lot of souls in my corner and they (you) are here with me, I’m happily not alone in this journey.

I hope you have a successful and fulfilling 2016, I am planning on it myself. By my birthday I expect to be cancer-free and getting my new tattoo (mockup below):

thumbsup

The IV is for the stage cancer I’m working with (4). Hopefully this clears up any questions about images I might have submitted recently.

Leaving plenty of room on either side of my arm for listing anything else that crops up. As you do when Murphy’s Law applies to you.

Bracing for the pain that won’t come, I remain your humble servant,
Eric