Somewhere Between a Monkey and a Man

  Yeah!  It's Saturday!  Starting to feel a little better, post treatment sucks.  I was (am) really tired and had a hard time focusing this week.  Treatment weighed a little heavier on me from a fatigue standpoint this time.  It makes sense as I know what to expect from most of the other side effects such as the bowel issues and have been making changes to help with coping with them.  The fatigue and mental cloudiness are not something I can just adjust a diet to deal with. Not being able to focus really bothers me.  I suppose that is because I pride myself on my ability to think and have spent a lot of time in my head.  Strangely, when I try to think hard it is as if my brain is throwing me out.   Hopefully, that will wane over the next few days as I get past the treatment.  I don't like not feeling like myself. I have been trying to think of some fun things to do so that we don't just watch TV every night.  Soon it will ...

 I really do have to start taking pictures during the day or something so it isn't just me sitting at my home office desk with the same sweatshirt on every day.  At least if if would warm up for more than one day I could have a T on or something.   It is really cold (by spring standards) this morning.  It's only 25 degrees outside.  I don't like the cold, I mean I don't mind looking at the cold days from in front of a warm fireplace, but I don't like the cold.  At least the sun has started shinning and things are turning green.  In fact, we will be mowing this weekend.   Below is a picture I took yesterday of a blossom on the Bradford pear tree in the front yard. I really do like when it starts to warm up and everything flowers.    The flowers will be all white once they open, but I like catching them at this stage as they have so much potential. I didn't feel well yesterday.  It is probably the first time during trea...

  So day after treatment ends is always fun.  Up at 3:00 AM, lying in bed trying to get back to sleep and my face is on fire!  You can kind of tell in the photo even with all the "Honolulu" them on the Hue settings the redness is mostly my flushed face. Work today is going to be hard.  With pushing treatment a day early I now have to make it through the steroid crash on Thursday and Friday (I usually only have to handle Friday).  I will most likely work from home tomorrow. Things have been good, I worry about Tiffany as I think the day to day grind of taking care of us is getting to her.  I try to be as self-sufficient as possible, but days like today I shouldn't be driving.  I really don't want to take time off of work though.  I know it sounds crazy, but work is what I do.  It makes me feel normal and productive.  I guess after 43 years of working (yes, I was delivering papers at 11) my mind just assumes work is what you do. I noticed ...

  I wonder if you all notice the Hue lights changing colors behind me.  Today's theme is blue plane so I try to match the fireplace to the light theme.  Fun stuff.  Combined with my happy light I try to find things that make my spirts brighten or relax.   I have been feeling really positive with hearing Sloan wants to do some further work other than just straight chemo.  Every one I have read about the survived a similar diagnosis as me has had the same mental approach and some similar treatment paths that started with standard chemo and then some combination of new treatments and surgery.  So I am keeping up my energy and my healthy eating to ensure that I am a candidate for whatever is coming in 2 months. My brain has been pretty foggy lately.  I know that is the chemo, but I hate it.  I pride myself on being witty and quick, but those thoughts seem slower lately.  I have been doing an ok job with keeping the "there is no tumor" a...

  I have an amazing family that would never let me down.  I should have been more attentive to them over the last 15 plus years.  Got too focused on success and not enough on avenues of other extrinsically and intrinsically motivating activities.  Working on fixing that now.  Cleaned out entire planting beds this weekend, l got my summer tires on the car and got Tiffany's car all fixed up for her 7000 mile work.  Cleaned the backroom (you may not notice the pile of boxes behind me - I was done with that), fixed the back screen door (for now).  It was a busy day. So top all this getting stuff done!  We got hopeful news at the oncologist this weekend.  Seems Sloan still feels I am a surgery or hepatic pump candidate (pumps the 5FU chemo directly into the liver). I have read some very good success rates on this treatment.  We asked Sloan to treat us aggressively and it looks like that is what they want to do.  The only way I beat this ...

  They changed my treatment this week so I can see the actual oncologist today and get chemo.  This messes up my usual treatment week as I can generally tolerate going to work on Friday of treatment week, but Saturday is usually a wash.  Being pushed up a week, that makes Saturday now Friday so I am not sure I will be able to work on Friday (we will see).  I suppose I could sit at my computer all day at home (I would do that all the same). Things have been pretty normal at home and I am ok with that.  I cleaned out a couple gardens yesterday, checked the mowers, mowed the front lawn (Tiffany: if you ever read this - I saved the tulips for one more week).  All normal stuff.  It felt good to be outside working.  It tired me out as well as it was extremely hot yesterday.  Either way, I was up and about and got more than 2 miles worth of steps in so I will take that as exercise. I am really getting anxious to hear about whether my treatment is wo...

Feeling good this morning.  It has been a decent non-treatment week.  I ambushed everyone that had gathered in my man cave.  It is usually just me, but everyone wanted to come out while I was cleaning.  I got a new vinyl shelf as the collection had out grown the three cubes, so a fourth was in order. I am currently listening to Rumors (Fleetwood Mac). When I was kid I would listen to this over and over.  Something about the music it is calming and haunting.  One of those albums that can immediately l throw me back to the 70s.  We were living on Center Street then.  We listen to the radio a lot as kids.  I know I had some form of transistor radio with most of the time back when AM still played music and FM was so amazingly clear, but depending on where you were, you couldn't get the FM channel. It was in the very late 70s and early 80s that the walkman came out and who would have thought how much that would change music.  No longer h...

  I'm listening to Jim Croce.  This is an album from Burt's house.  The LP is in good shape after I cleaned it.  It plays really clear.  I guess the thought for me this morning is Leroy Brown is my cancer and I'm Slim.  I am going to beat the hell out of this cancer.  My gastro environment is really the only remaining problem.  They say the pain in my right side is most likely a swollen liver rubbing on my insides, but I think the pain there is brought out by large meals and gas when things are moving right.  I'm say this because it is rare now to have the painful side as it is more of a crap. The top of the RUQ almost never has pain unless I am extremely bloated. I take all of this as very good signs.  I get a little floaty headed,  but I think sometimes that is just exhaustion and a lack of motivation at times. Either way, I slept until 6:30 because I took another 1/2 of a sleeping pill at 2:25 AM after dealing with the dogs....

  It is actually, 3:51 when I wrote that, but couldn't help but think about Someone saved my life tonight when I looked to see what time it was.  I loved that song as a kid.  I used to listen to it over and over.  The "thank God my music's still alive" - I know that Bernie probably didn't mean what that line meant to me as a kid, but music was my escape.  Sadness, loneliness, happiness, music was always there for me. I think I have a vivid memory with a song in it for a lot of items.  I still use music as an escape.  It has always allowed me to disconnect myself from what is going on around me and whisk me away to someplace else in my imagination.  It has been helpful during the first few months of this diagnosis and treatment. One of the things about me and music is I pretty much listen to everything.  There are songs I don't like, but from a genre perspective I pretty much listen to everything.  I think when most people say they listen...

  And you may find yourself up at 2:27 AM, and you may find yourself letting the dog out, and you may ask yourself, "What did that dog eat?" Damn!  I was driving to work yesterday and pulling up the hill on Greenbush.  At the right time of the morning, at the right time of year, the sun is rising right on that road, in your face as you drive up the hill.  Yesterday was one of those days.  It wasn't super cold 39 or so and the sun was very warm.   You always hear what people think heaven is.  I know what heaven is, it is right here on earth living with and loving my wife and raising my children, it's simple.  I kind of hope though that the afterlife is filled with the feeling my heaven gives me, a strong sense of hope and bliss.  Driving up the hill into that bright morning lemon sun, I understand why I am a morning person.  I love dawn, the warm sun just above the horizon, a promise of the day and in spring there is just this feelin...

  I am so late getting going this morning.  I have been needing more sleep to feel restful.  I went to bed at 8:30 yesterday and still do not want to get up by 5:00 (note:  I generally just wake up at 4:00 AM or used to).  It is still cold this morning as I sit in front of my UV happy light in my room filled with Phillips Hue lights.  I set them to the Honolulu scene so the colors are very tropical sunny (sunrise or sunset) with a bright sun shining right at me.  I like the happy light and I have always loved laying on the beach and closing my eyes and seeing the red light that filters through from a summers day.  Listening to the sound of the wind and the waves.   This morning other than being tired, I feel good.  It doesn't help that Nala has a tummy issue and needs to go every 2 hours.  I felt bad not getting Nala the second time, but if I don't get enough rest than I would have to add to Tiffany's daily burden and want a ri...

  So it is snowing, we didn't get the 6 inches or so they were threatening, but it is a good 3 with a lot of slush.  Suppose that means it is melting fast.  This weekend is forecasted to be really nice so maybe we will get out side and enjoy our yard.  I will like that.  Started some test wild flowers, herbs, and MJ.  I have a couple MJ clones that are doing well too.   I felt pretty good last night and today thus far.  I like it when I feel somewhat normal.  I still have the nagging pain in my side (try not to talk about it around Tiffany, but it is there).  I don't think it is as bad as it was before so all this gives me hope. Speaking of hopeful.  As much as Maeve is planning the most expensive trip to Disney World ever, I am just thinking about getting the landscaping done and finishing the build around the porch, etc...  I want something I can enjoy for years.  I should have been working on all of this, but there...

  So it is freezing outside this morning (23 degrees) and it is going to rain all day.  I suppose those April showers bring...  Well you know how it goes.  I am looking forward to the sun and flowers.  I am going to pick up a seed spread for the garden next to the deck.  Will be nice to have some flowers there. It was a pretty rough weekend.  I haven't felt this tired during treatment, but this weekend I did.  So I have that going for me.  I will have to go to sleep a little earlier to get the rest I need as my alarm clock has been waking me (well the alarm on my phone).  I am not used to having to be woken up by an alarm.  I usually wake up well before them.  I blame it on the getting up all night to use the bathroom. For the most part, I still know that things could be worse and that I have a loving family to be with.  It was nice to have everyone over for Easter.  I was really out of it during dinner, but Tiffany m...

 No picture today.  I got up late and I don't feel like it.  It is 30 degrees outside and my fingers are burning from the cold/chemo.  This is a side effect of my chemo that I have a sensitivity to cold.  It makes my fingers burning numb in the cold, so a cold house leads to no escape from burning finger tips.   To top things off, I am pretty sure I have a sinus/ear infection, just what I need now.  I suppose I get one every spring so I should have been ready for it.   Enough bitching, I will probably skip the bike today.  I know the exercise is good for me, but I am really tired.  I didn't sleep well again as I am still moving things out (wink wink) so I am up all night doing that.  Some days, I just want to sleep all day, but that doesn't do me any good.  I got a lot done yesterday, cleaned the counter and the coffee area in the kitchen and I got the backroom cleaned up more so that I can grow a couple plants (yes, ...

  So the dog actually woke me up.  It has been weeks (can't remember how long) that I slept passed the the dogs.  It is nearly 6 AM and I am exhausted.  I see a nap in my future.  I am dealing with the usual post treatment BS, I can't say if it is any worse or better, pretty much the same.  I really am having a hard time focusing as of late and should do some mental exercises (that is part of this daily writing is to at least keep me thinking).   I suppose I think at work, but IT has become so simple to me, especially what I deal with at work, that I don't really think about it.  It is more auto-pilot at the small company I moved to.  I am ok with that and they have been great about allowing me the time I need right now.  It's a win-win situation. I worry about Tiffany, she seems so stressed out.  It may get better once her father's wife is back in town so she doesn't feel the need to have to always take care of him.  With...

So it is down below freezing again this morning, so it is the return of the sweatshirt and yesterday was the last day of chemo drip for this treatment.  I am in 3 of at least 6, but most likely 12.  The cold sensitivity is increasing with each treatment as unfortunately, is the chemo fog.   I had a heck of time writing yesterday's entry as my typing was all over the place.  I also had a rough time with names.  Was watching Lord of the Ring's Two Towers (Tiffany's favorite trilogy ;) ) and could not remember Liv Tyler or Steven Tyler's names. Either way, I have been feeling a little better, but these next two days post treatment are usually pretty rough. I am hoping some diet and medication changes on my part will help with the issues.  I am sure if you ever read this you will all know. I am really looking forward to the warmer weather.  Thus far, I still have several hours in the AM when I feel good enough for physical labor and I plan on shoring ...

 Of course my system crashed when I tried to take a non-sweatshirt picture today are the gods trying to tell me something?  It still has a hood and a pouch (good for carrying about the chemo pump).  Just t-shirt material and short sleeves. See - not a sweatshirt! I am not going to lie, my brain is a little floaty today and I never get stoned or take anything before work.  I like to keep my brain clean, but I am a bit foggy this morning.  Seems like my fingers do not want to do what my brain is telling them.  I will muddle through it. We got what we are taking as a good sign.  My CEA number (google it) went from 10.8, which shows sign of disease, to 5.8 which is just above high normal on the scale.  We are hoping this means chemo is working and that I have a chance to beat or extend this thing.  I am doing everything right and keeping my hopes and activity up, so time will tell and my attitude will help. Things at home are good and we are enjo...

Picture taken at treatment 2 with the prayer shawls my mother in law made for us And this morning's picture that makes me realize I am loosing control of the man cave   Either way, yesterday was a good day.  Even with the long treatment day, I got work done for work, I got the dog mess cleaned up for the bulk of the dog mess (It was a little tiring, but I was happy to be outside and doing something for the family.  I really do like to please the one I love. I got up really late this morning so I will need to cut it short.  Still a little pain in the stomach from the bowel movements.  I find my work dyslexia is getting a little more prevalent, I have been able to fight that off for years.  I will need to slow down my verbal conversation to help with that.  I also can't seem to remember anything with really searching for it in my head.  I will have to work on that as well.  I pride myself on my intelligence.  Maybe I should pride myself on...

 How can it be the 12th of April already?  Today is a treatment start date.  I go every other week on Tuesday's.  The treatment thus far hasn't been so bad.  The sensitivity to cold on my fingers is a bit annoying, but mostly the after treatment bowel issues is the problem.  The steroids provided have thus far kept any "sickness" at bay (knocking on wood).   I have a ton of boxes behind me in this picture.  That is because we got a bunch of household stuffs delivered.  I can live without the fireplace for a day.  I have the under the desk heater as well.  I am always so cold out here in the winter/spring, but soon it will be a heat box as the sun sets at the back of the house where my cave is. I have been doing a pretty good job of acting like all is good around Tiffany.  Short of talking about the bowel progress.  I really enjoy sitting and eating with her, watching TV, going for walks.  I know this is really we...

  So it is a little cold this morning - just about freezing in our bit of NY.  The weather is supposed to be warm the next few days 60's all week and I am going to revel in it.  There are a couple days of rain expected, but I am going to get outside!  My happy UV light has been working overtime in the AM when I write these posts.  Between it and the "Honolulu" scene on the Hue lights I at least feel like a bit of sun.  Who would know that a faired red-head such as myself would be such a sun worshipper.   You know, I think some would say that Tiffany and I's obsession with sitting out on the deck is just a drinking thing or a not wanting to be in the messy house thing, but it really is a relaxation and enjoying life together thing.  We both appreciate the sun, Tiffany is actually like one of those cups or shirts that changes color with heat.  The minute she hits the sun her skin turns to that of a beautiful tan goddess.  Whereas my s...

  Same sweatshirt, but my cave is getting messy.  I am going to have to clean that up after this post. It isn't that messy, the bag has my car cleaning stuff (just need a weekend with some decent weather!).  The other is my old game box.  I went to get it from storage.  There are so many memories in the storage unit.  I know understand why Clark Griswold feels immersed in his attic with the old movies.  There are Christmas things, and all my Pop! and other items.  The one that made me stop was standing Darth.  That was right when I was being moved into Cyber that he became an office mate and our hallway mascot.  It was a good gift for me for Christmas back then.   I really do just need to clean out the rest of this room and line the walls with shelves to display all the toys.  There is something about an old toy or unopened knickknacks that just takes me back to the time I got it.  There is also that feeling as the th...

  I can't believe it is the 9th of April already.  I started these daily entries two months ago the day after a doctor told me straight up that I had cancer.  At the time, they just new I had spots/lesions on my liver and no other information.  The journey to two months later has not been fun.  That isn't true.  There have been bad days and lots of crying (at least when I am alone), but I have had time to spend with my family.  Hug my wife, tell my kids I love them, play with my animals.  Those are all good days! I can't wait until the weather is better.  There are so many things I want to do outside and though my energy levels aren't what they used to be,  I am going to slowly bang away at them.  I know it will upset Tiffany and she will tell me to slow down, but I have to keep up with the "there is no tumor" attitude.  I lost it for a while there when the tumor was making it hard to "go", but I need to get back to the "I'm be...

  I have to wonder how many "living for Friday" weeks I've had in my life?  Honestly, I think about how much looking forward I have done throughout living.  I will do that tomorrow, I will get to that this weekend, that trip will have to wait, etc...  It really is amazing how you think you will always have time.  I suppose that is something that everyone faced with mortality does.  The question, why didn't I do that?   I don't have a lot of regrets.  Taking Tiffany to Europe - big regret - should have done that.  I will do that (sorry had to throw in a positive thought).  The big point here is that when I look back at things I have done, I did the right thing at the time, and I continue to do so.  Crazy large gesture days, that one last fling vacation, or anything of that sort is the tale of a movie, not real life.  The truth is, I have had a lot of blessings in this life and it is important I remember that.  The bigg...

Hey, different sweatshirt ;) I feel pretty good today, I haven't eaten yet so we will see how that goes.  When one of you reads this blog, I truly was taking it one day at a time.   I was trying to think about my first real memories.  It really is hard to be honest as you don't know if those early memories were dreams, stories you were told and think you remember, or just stuff you made up in your head. For me, the first real ones (I think) are riding my bike on Sun Valley Drive (my dad teaching me and then me doing it by myself - I would have been 4).  I have a Mets cap on and I was very proud of myself to be able to ride with the rest of the kids in the family.  The next one was again on my bike.  We were living in Elmira on Front Street (the long family home).  In between houses I suspect.  I was riding along with an old AM radio shaped like a donut that was fatter on one side than the other.  It twisted out and had a speaker one side...

That's my Squirty - the big gray cat.  He didn't stay long this morning.  Well, the bowel issue continues to be a problem, but this morning was a little better.  I need to drink more water today (I am already in the neighborhood of 60 to 80 oz so I am already drinking a lot.  It is funny how I would have no problem pounding 64 oz of beer on the deck in an evening, but drinking that much water seems a chore.  I suppose some of my slow moving bowels aren't helping.  Either way - more water dude. I have been worried about my cognitive capabilities as of late.  Tiffany is a well I think, but she doesn't say anything.  I have been having issues with wanting to focus on deep thought tasks.  Menial items with some physical component, such as building a server, are fine, but tested myself with some Cisco networking in CML yesterday and it was a struggle to want to complete just setting up the CML to my Linux Ansible host.  I suppose that would b...

  I really should start taking some pictures that aren't at my desk.  So other than my bowels not working, I actually feel ok.  I was a little brain foggy yesterday, had a hard time focusing on any one thing.  Albeit, I did get the taxes done... :(  I am getting somewhat worried about Tiffany and myself at some point.  She mentioned the other day that you can't get away from this.  That is a true statement.  You go to bed with cancer, you wake up with cancer, and you try to do things that keep you from thinking about the cancer.  It is hard and I worry she is not coping well.  She keeps busy, but that isn't coping.  I think the hard item for everyone is the waiting.  You just want to know how it is going and it is a slow process. I have been thinking about learning something new, coding language, etc...  I wonder if the reason I am avoiding that is my brain doesn't want to focus that long.  It is going to get to the p...

 So post treatment went way better than last time.  Still a bit tired and sick to my stomach, but I was able to handle it ok.  I am beginning to think that all the pain in my side and stomach was associated with the rectal tumor and not my liver.  As I go through this treatment, I am struck that the pain is almost always connected to eating and being full, though there is some dull pain in my RUQ, I think it is from my digestion. Anyway, I left the house yesterday and went to a brewery for a couple beers.  It was nice to get out of the house with Tiffany, see a friend.  Laugh a bit.  The music was nice, but too loud.  Believe it or not, that little trip took a lot out of me.  I was really tired by the end of the day.  My system is also not used to alcohol - at all.  I haven't had much of anything to drink since December, so the smallest amount of alcohol makes me tired. I have been thinking a lot about what I "should" be doing....

  So yes, I know I haven't changed the sweatshirt in a couple of days.  I will today as I am getting out of this house!  I worry about being around people that might get me sick, but I also need to do stuff.  I am going to run to the storage unit and get my old game box.  I have virtual machines for Windows XP and Windows 7 (and 98 as well as DOS, but let's not go there).  Either way, I have been nostalgic lately so I might as well enjoy them. I am feeling pretty good today.  I got through post treatment number 2 much better than the first time around.  I have noticed my fingers getting a little tingly and I know that neuropathy is an issue with the drug I am on, but I think numb fingers is a fine trade for more years of life. I am still hoping for some warmer weather, but it is that time of year when it is usually raining and chilly (spring in upstate).  It looks like Tuesday will be nice so maybe I'll get some outside time in.  The med...

  So here we are in the first days of April.  I like that we are getting to spring and I know that it is going to be warm soon, but the constant swings of warm, cold, windy, rainy start to way on me.  I just want to step outside in a warm morning and listen to the birds.  I've enjoyed living in our rural home.  Other than some road noise in the morning, you can stand on our deck and just block out everything but the morning birds.  It's a nice perk.  The evenings with the sun setting on the deck is pretty damn awesome too. I am doing a lot better with the after treatment days than the last time.  Still a little rough in the digestive tract, but nothing like last time.  I was pretty tired by the end of the day yesterday with the steroids wearing off, but I feel pretty good this morning.  I am going to try and be active today, but we will see how that goes. I really have been quite positive thinking about my cancer lately.  I am tryin...

  There are tumors, but I am doing the "there is no spoon" if you remember.  Other than my bowels moving like the Los Angeles freeway at rush hour after my chemo treatment, I don't feel all the bad.  My side hurts a bit most of the time, but not as bad as it has.  So I am going with any improvement in internal pain could be good news.  The waiting game is painful. I am going to go to work today.  The Friday after last treatment was painful.  More so around my bowels than the steroid crash.  That came Saturday.  I will say that at the end of the week on treatment week my brain seems cloudy.  Not horrible, but focus isn't what it normally is. Tiffany has been putting up with me changing my desk stuff outback.  I got the Linux workstation setup so that I can quick switch and use the dual monitor setup.  I should at least include a picture in that direction since I have been posting them in the other. Organizing the desk and cleani...