On my Gofundme page soon but for now:
On my Gofundme page soon but for now:
Hey its time for an update. you’ll have to forgive my misspellings ad other errors as i have some nasty papercut-like slices across 4 out of 5 fingers on my left (good) hand. so this might need to be a bit brief.
I’m feeling the effects of all this poison now, after for back to back chemo sessions again. Almost had more today but need a 4th week to get more energy back. I’m just not the spritely 45-year-old who could bounce back from it. I’m starting to get sick of this dirty dishwater and it’s starting to show. It’s to the point where I’m not bouncing back like I used to…
So I’m now on short term disability. I just can’t be counted on to hold down any consistent hours, mornings take a long time to get up and get ready for the day, sometimes i’ll be so pooped and if i didn’t get enough sleep the night before, i’m going back to bed. wake me up for lunch please.
It used to be that I had a full-time job and I manage my cancer on the side; now those roles have reversed. I have to do so much maintenance on myself — especially in the mornings — that by the time I get ready to go to work it’s almost noon. So it’s like I have a part-time job along with my full-time cancer.
2 weeks ago I went to go see my oncologist and we talked about… well, frankly, the usual progression of my specific cancer, what I will heretoafter be calling the ‘endgame’… at one point I straight up asked him, “based on what you’ve seen in other cases and compare them against mine, how long are we talking?“
I didn’t push the questioning any further than that. Seeing as how I was feeling 2 weeks after chemo I can understand where he’s coming from. There will come a time where I can’t stand the chemo anymore and it makes me question why exactly am i suffering like this? Or the chemo just plain won’t work on my tumors anymore… at that point, I’ll have to make that decision to stop treatment and start trying to heal as best I can on my own and fight this stupid thing with the gloves off and see how far it takes us. Until then I’m looking forward to bringing this question up again to him next Halloween.
In related news, I also got (yet another) CT scan on Monday to gauge progress, which we went over today. I’m copying/pasting this stuff as my fingers are goin south on me
The thyroid gland is unremarkable. Right chest wall port tip within the right atrium. No axillary adenopathy. Normal caliber thoracic aorta. No pericardial effusion. Coronary artery calcifications. Pulmonary arteries are unremarkable.No intrathoracic adenopathy.No pneumothorax. No pleural effusion. Left basilar volume loss. No focal consolidation or suspicious pulmonary nodule.Abdomen and pelvis:
Redemonstrated areas of heterogeneous low-attenuation throughout the liver, reflecting sequela of prior embolization. The previously described caudate lesion currently measures 1.4 x 0.5 cm series 2 image 105, previously 1.5 x 1.2 cm. The low-attenuation lesion in the left hepatic lobe measures approximately 1.2 x 1.8 cm series 2 image 100, previously 3.3 x 2.7 cm. No new hepatic lesion. Nodular liver contour with splenic and esophageal varices.
Suspected cholecystectomy clips. Mild splenomegaly. The pancreas and adrenal glands are unremarkable.
Symmetric renal parenchymal enhancement. No hydronephrosis or urolithiasis. The bladder is decompressed. Prostatic calcifications noted.
Scattered colonic diverticula without focal inflammatory change. The known colonic mass is not well identified by CT. Normal appendix. Right lower quadrant percutaneous drainage catheter tip terminating within the left lower pelvis.
Large volume ascites. No adenopathy. No free air.
No aggressive osseous lesion. No acute fracture.
1. Improved hepatic metastatic disease.
2. Resolved enterocolitis.
3. Cirrhotic liver morphology with findings of portal hypertension, including large volume ascites.
About as good a scan as i could hope for, though the coronary artery calcification is not good — watch heart disease take me before the cancer does. I’ll admit, i’ve finally been following everyone’s suggestion to eat what i want, especially when my arm muscles have turned into chicken wings. I’ve been on a quest to replicate a long-gone favorite of mine from Taco Bell, the chilito. I might have to make that recipe the guy has there…
Obviously the chemo is still working. Its just the side-effects i can do without. but i have 1 more week before i get more chemo — and after that scan on Monday, i might just get back up on that horse. i will not relent. i am driven.
And thank you for the continued support. the love i feel coming from all directions, it’s overwhelming sometimes… i can sense the energy from you and it keeps me going. I love you all.
Mom and Billy, my Soul Brother #1, thanks for the visit, it was just what i needed.
i need to get up and walk more…
So I’ve been enjoying just taking chemo pills in the hopes that they will do the same damage to the cancer as infusions; my recent CT scan, unfortunately, has shown otherwise. The cancer is advancing (slowly) but it’s taking a toll on my quality of life already, as I struggle with a bloated abdomen and severe edema in my legs, ankles and feet. I met with my oncologist today and he has a sense of urgency for finding an alternative procedure that will help me more than just reverting me back to what I’ve been doing since the beginning: several IV bags of chemo, with the pump, etc. It’s incredibly inconvenient and the results are expected to be less than before, since I’m a bit weaker and might not be able to handle full doses. Plus, it does nothing to the cancer but beat it back for a bit.
So to all who have offered help, I’m here to ask for it now. I need some help with searching for clinical trials that might help me.
I don’t have a lot of criteria to search with, other than describing what I have and looking for trials that address it: Stage 4 colorectal cancer with metastases in my liver. I’m willing to travel anywhere in the US or even canada i suppose, i don’t want geography to impact my search results too much. If i’m lucky I might land a trial where you live (and then you can enjoy my company in person, woo-hoo)!
If you do search, please feel free to send me anything that looks remotely interesting, I can forward to my oncologist and let him make the call whether it’s a viable study or not.
Here’s the catch: I only have about a week to look, and then I need to get back on IV chemo if I don’t come up with anything. Please feel free to email me directly at eschuttler at gmail.com with URLs.
Here’s a few resources where i need to search, but I’m open to other cancer centers you might know of that holds clinical trials:
Time is of the essence — I love you and thank you for your continued support. Now’s your chance to help me kill this crap. Please help with a couple hours of your time, if you can, between now and July 21st or 22nd.
thank you, thank you, thank you…
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,
Last week I was in a bad way – feeling really bloated in my abdomen, swelling in my toes/feet/ankles/shins, all the way up to my trunk. So I called my oncologist last Thursday and he asked me to come in for an ultrasound to see whether this might be due to clots or something. Turns out I didn’t even get to the ultrasound, as the blood panel they took when I arrived showed I was low on hemoglobin levels, so they admitted me to the hospital for the St. Patrick’s Day weekend. I was there from Friday afternoon until Monday morning, as they kept hooking me up to units of B+ blood.
Once I got settled in, one of the doctors from the hospital came in and we talked about what meds I’m currently taking and what seems to be conflicting. She was excellent in helping me see what the hell is really going on, which turns out to be a number of imbalances that needed to be straightened out, not the least of which was the bleeding in my upper GI tract that accounted for the low hemoglobin levels. And I was taking anti-coagulants which didn’t help things at all. I don’t blame my regular oncologist because I realize he has to see a lot of patients in a day and he can’t really step back and look at ‘the big picture’ as someone coming in cold, looking at the facts. I’ll probably be holding regular meetings with the good doctor and get her input when things seem wonky. Just not so wonky that I have to be admitted again.
And to be honest, the hospital stay was fine; I felt good for the most part – though after they drained 900ml of abdominal fluid I felt even better – but I equate it to basically having a sleepover with blood and drugs. There was a cool TV channel I had never seen before that played all the cool retro shows (Cannon, Mannix, Twilight Zone, old westerns, etc) that I had on 24/7. The food was passable, you could order from a limited menu (their side Caesar salad was tasty), and the nurses………..
I cannot say enough about the quality of care I got. Each nurse assigned to me (both day / night shifts) was engaging, friendly, and sweet to me. After I came home I tried to design some sort of card for them, but had lost all of my work on it; I was despondent. Perhaps it’s because my mother is a retired nurse but I have a soft spot for them. A week later, I still can’t think of any of them who helped me last weekend without tearing up. I have a tough time still feeling like I deserve help, I guess.
Anyhow, I was finally released on Monday, only to go across the street to get my next round of chemo before returning home. I’ve been put on a low maintenance chemo dose now, and mo more Xarelto for me. That stuff makes me bleed in the WRONG places. Right now, I’m okay, feeling the fatigue from the Neulasta injection (which is also on its way out soon) and generally pretending I have the flu, even though I got my shot in October. bleah.
Onward and Upward. FWIW, once they took me off of a couple conflicting drugs, my hair is starting to grow back. Like, in a hurry. I love it. Can’t wait for Spring to finally warm up. Much love to you with hopes that your Spring is good as well.
Hi all! Long time no post, can’t believe how fast the holidays whiz by these days… I’ve been getting requests for updates on my health lately so it’s time to get back to it.
Earlier this month I took my 3rd annual skiing trip to Denver with my good friend Ken and a few other partners in crime… even with my best efforts to maximize my health – I moved a chemo infusion appointment out a bit so I could heal longer without a new round of side effects getting in the way – I still was struggling with getting enough oxygen from the thin air up there. Never got over it, was huffing and puffing every day. I’m not certain I can make it back there for skiing next year, I’ll have to see how things look in about 9 months.
Before I was diagnosed in September 2015, I spent that summer kind of in a funk… I wasn’t making any art but and was struggling to find new avenues to interest me. I took up ceramics for a bit, screen printing, even some leatherwork. The lack of intensity I was experiencing with what should have been perfectly good avenues of creativity left me very frustrated and blue. Then came the cancer.
Since then, I’ve been stuck in healing/fighting-for-my-life mode and hoping there would come a time where I could feel the same obsession about something. The last time I went thru this was when I started homebrewing 14 years ago. I would lose sleep mentally going over all the details for making my own 10-gallon all-grain brewing system. Eventually I got all the resources together and enjoyed putting everything together almost as much as drinking the final product that came out of the beer tap. It was an altogether satisfying experience and I felt very proud to have created a brewing system – from crushing grains to converting a chest freezer to a refrigerated beer cooler – that is still functional.
Luckily for me, I happen to have been inspired by 2 completely different realms of creativity lately that I’ve been equally obsessive about, and that has given me new hope for my future mindset.
Christine and I have been watching the Great British Baking Show on Netflix lately and I started thinking about trying to start a batch of sourdough starter (again) to see whether I could be patient with it enough to crank out some homemade bread, in order to offset the amount of nasty GMO-filled store-bought bread in the house. I did research, went over the type of tasty baked goods I could make in my head at night, and the result is I have a nicely-functioning starter I’ve been cultivating for about 6 weeks now.
But that wasn’t it, apparently. On a visit to my brother-in-law’s auto/motorcycle workshop I noticed a stack of discarded iron leaf springs and suddenly had an urge to do something with all that metal. I’ve been watching people make some pretty decent chef’s knives out of old scrap metal using blacksmithing techniques – using anvils, quenching the metal, sanding and filing, making wooden handles, that sort of stuff.
And the light, the obsessive creative ball of energy I’ve been missing for 14 years came back. In my creative environment, I now have purpose again. I’ve spent plenty of nights awake mentally putting the components together and imagining what it will be like to begin the process. I’ve built my foundry already, I’ve created a stand for my anvil, all I have to do now is heat-test my foundry one more time and then I’m going to be hitting hot metal with my trusty hammer.
These events have given me and my mind something to get out of bed for, with more energy, more joy. I don’t know how many damned corners there are to this journey but I think I just turned another one. A great big one that took 14 years to get around. it is the impetus to the next phase of healing and I have the perfect song that plays in my head (very loud) now every time I think of blacksmithing…. which is quite a lot lately. Video below.
I love you all. Knives for everyone!
Justification, the means are the end
Doctrine and dogma, I will not relent
This world a garden in need of such weeding
This world a minefield in need of such sweeping
This ministration without full consent
Fire and brimstone, I will not relent
Just as all good things must come to an end
I will administer as I see fit
I will not relent
I will not relent
I will not relent
I am driven
I am driven
His name was Larry, not Lawrence or any other name where Larry would be a nickname. He was born to a Army Air Corps flight engineer and a hairdresser in ’46, to be followed by a sister a few years later. He was a senior in high school when Kennedy was shot, enlisted into the Army after high school and served his time in Vietnam as a lab technician in a MASH unit. He settled down quickly after returning to the states, marrying my mom and raising my brother and myself for a few years until my mother served him divorce papers.
He had another chance at married life and fatherhood, marrying my stepmother in ’80 and allowing both my brother and myself to live with them before deciding on having children of their own. He loved his kids and always found room for them in his house and his heart.
He could party — he could always eat more than me, and (until recently) could drink more as well. He taught me to always be punctual, that you can’t be a friend and a father to your kids at the same time, that pickled herring is delicious. He was fiercely proud to be a Vietnam veteran, something he felt he had to repress during my childhood. He had a quick wit and was able to sling out zingers as long as he could talk. He shared his passion for models with my brother and myself. He knew his way around complicated electronic circuits, despite not being able to tell the difference between red and green wires. He could build anything out of wood. He didn’t like email, he preferred to talk to you directly. He was NOT a fan of Obama. He loved to hunt quail and pheasant and fish with good friends. He was a Bud man.
Larry died quietly this morning, in his sleep with my stepmother by his side. He suffered from a lot of complications at the end, mostly originating from the fact that his liver wasn’t working the way it’s supposed to — it wasn’t working much at all, really. I repeatedly offered to give him mine but he always refused. My wish in these last few months was for him to not be in any pain or discomfort; knowing he is free from these earthly limitations is what keeps me upright today. I can now redirect energy and get my own self back to whatever normal is for me these days. I am about out of the woods as far as the effects of radiation therapy are concerned; my weight is up, I feel better with chemo started again. I keep my father’s spirit close as I work on my own health and get stronger again.
Please spare a second and give my father a thought – he’s half the reason I’m here today. I appreciate your energy and prayers more than ever now.
Got my baseline CT scan yesterday and went over the results with my oncologist today. Basically the effects of not being on chemo since late May has resulted in some tumor growback, as well as swollen lymph nodes. It’s hard to imagine it’s been 5 months since chemo, since over half that time was spent trying to heal from the effects of all the radiation therapy I put myself through over the summer. Unfortunately that 5-month break allowed the tumors an opportunity to grow a little.
This isn’t surprising to me anymore; I’ve come to the realization I may never get rid of this cancer. Generally the best way to be cured of cancer is to cut the cancer out of the body, and if I keep getting shut down over the possibility of being operated on, then obviously an alternate method needs to be discovered. Chemo won’t kill cancer outright, something else needs to eliminate it.
So if I’m not ever going to be operated on, then I’m looking at a chronic case which will constantly need some strength of chemo to keep the tumors at bay. And then it’s a matter of playing for time – until someone discovers a cure, or I run out of insurance to pay for chemo. I’m not being negative, I’m just seeing the reality of the situation for what it is. Of course my attitude continues to be to fight this until it’s gone, I just can’t be disappointed if it doesn’t go away on its own, which is a long shot statistically.
Part of the issue with the radiation therapy I had, was dealing with a sour stomach and the lack of appetite that goes along with it – I entered sort of a negative feedback loop with not being able to eat consistently and I dropped a bunch of weight. I didn’t feel like cooking for several weeks, Christine had to step in and make dinner while I stared numbly from a couch. Got all the way down to 180 lbs, which is a little gaunt for me. I can’t remember the last time I weighed that much – some time in high school probably. So finally my oncologist put me on some medication to stimulate my appetite and told me I should eat anything I wanted in the short term, while I get my weight up. Now, I’m a good 10 lbs heavier and hungry all the time, I need to stop taking that medication before I start going after the kids’ Halloween candy.
Having to deal with this much discomfort while I was trying to recuperate after my Theraspheres insertions sort of put me at a disconnect with myself and others; I’ve not been in the best moods and have been keeping a low profile while I’ve waited and wondered whether this pain is my new normal. I’m happy to say that it isn’t, I feel better than I have since July, and I’m mentally getting back on track. More chemo is looming – I have an infusion scheduled for the 14th – but at least I know how that affects me and how my body reacts to some of it. It’s definitely the lesser of the 2 evils for me.
Thanks to all who keep sending me positive energy, you’re propping me up here. Also many thanks to those who nourished me and my family with dinners while I was indisposed, it meant so much to not have to worry about what to cook. And the apple pies from Cassie, my mother-in-law, could revive me from a coma. Or, if I ate enough, put me into one.
Okay I need to snack again. Onwards and upwards! I’m getting up and brushing myself off, the fight still continues! I love you, thank you for still being here with me. I need to figure out a way to finish off this cancer, without being operated on…
Things have moved so quickly around here that I’ve not been able to provide an update on the CT scan I had done a couple weeks back:
Findings:Chest: Right chest wall port catheter terminates in the superior right atrium. The visualized thyroid is unremarkable.Heart size is normal. Trace pericardial fluid. No pleural effusion. The central airways are patent. No suspicious pulmonary nodules. Stable granulomas in the right lung base.No mediastinal, hilar, axillary or supraclavicular lymphadenopathy.Abdomen and pelvis:Heterogeneous areas of geographic low attenuation throughout much of the right hepatic lobe, consistent with postradiation embolization changes, and similar to recent CT scan. There is increasing enhancement of a left hepatic lobe lesion (series 2 image 128), as well as decreased conspicuity of two additional left hepatic lobe lesions (series 2 image 112). Additional multifocal metastatic disease is not significantly changed from prior examination, including a 1.4 cm caudate lobe lesion (series 2 image 22). The main portal vein is patent. No biliary ductal dilatation. Stable calcification of the gallbladder, which may represent metastatic disease. Unchanged portacaval and gastrohepatic lymph nodes. For example, a portacaval lymph node on image 123 measures 1.7 cm in short axis, previously 1.7 cm. Enlarged, possibly necrotic periceliac nodes are also seen.Mild splenomegaly, similar to prior. The pancreas and adrenal glands are normal. Symmetric enhancement of bilateral kidneys. No hydronephrosis. No suspicious renal lesions.The esophagus and stomach are normal. There is a single, mildly dilated loop of small bowel (series 2 image 173-203), gentle tapering to more decompressed bowel at either end, which may represent a focal ileus. Compared to the prior and may 2017, there is in the sigmoid mass at the site of the known primary (series 2 image 225) measuring 3.7 x 4.2 cm. Increasing perihepatic and diffuse ascites. No free air.Bladder and prostate are unremarkable. No acute or aggressive appearing osseous lesions. The abdominal aorta and its central branches are patent and normal in caliber.Impression:1. Post embolization changes in the right hepatic lobe with stable to slightly increased conspicuity of left lobe metastatic disease. Recommend continued attention on follow-up.2. Increased sigmoid mass compared to May 2017; this mass is stable compared to examination dated 8/7/2017.3. Stable retroperitoneal and perihepatic lymphadenopathy.4. Increasing abdominal ascites.
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:
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.