After not cutting my hair for a year, tomorrow I’m going to get the clippers out and give myself a crew cut. Kinda disappointed, I had hoped to just let it grow. But in the shower tonight big plugs of hair were just coming out in my hands, so rather than look like a molting bird, I’ll just cut it off.
I guess another aspect of it is for years people have told me I look good, don’t look like I have stage 4 cancer, you seem strong, etc. Well the reality of not looking so good is setting in now. Lucky for me I have never been one to care much about “looking sharp”. I prefer comfortable clothes, don’t care about fashion or hairstyles and the like. What bothers me is that I may start to look frail, like the wounded gazelle that the lions start trailing.
I know I walk funny because my feet are all swollen, and I’m tired and weak all the time, but I like to “think” I look OK. I have always felt that out on the street one has to present a strong image, identify as a predator, not prey in order to survive. Pretty much anytime, any neighborhood, anywhere, I never worried that I couldn’t take care of myself. Now I am starting to realize that I’m not strong enough anymore to feel that way. Oh well, it is what it is, can’t change it, just have to accept and adapt.
OK guys, this is the post you’ve been waiting for. It’s how we ended up on an idyllic little dead end in the mountains where our drive in is past the neighbors llamas, goats, and Shetland ponies. Our back yard is pasture that rolls up steeply to a ridge. Wild Turkey, Bear, Birds I’ve never seen nor heard anywhere, just incredible wildlife. Apparently we are in one of the most Bio-diverse regions in North America. Made friends with a couple neighbors and it’s like paradise. I have a lot of pics, I’ll just make a big picture page with captions, sorry light box lovers. Yeah, everything is amazing here, I feel so fortunate.
Only one catch is it looks like I’m facing the Epic Battle of my journey with Cancer. Back in mid July, while still in NY, I started feeling like I had a sinus infection. That was odd, because I’d never had one, am not prone to bronchitis or the like, even though I’m a heavy smoker. Without health insurance, I just took OTC allergy meds to help with the pressure and pain. Well, by the time I was driving down here, August 11th and 12th, I was having some bad symptoms. I still hung in there, and started scrambling to try and get medical care. The Veteran’s Hospital here, in Asheville, NC is absolutely top notch, they saved my life, as I saw them doing for so many others each day, just amazing.
September 25th I ended up in the Hospital as my brain was swelling and the pressure in my head was pushing my brain downwards. I’ve been on Steroids to control that ever since, but I’m home now for a week and feel pretty good most of the time. What they ended up discovering is a new tumor in the back of my head, one that’s big and running in the skull, up the dura, and down into the sagittal sinus, a really crucial area. The Neurosurgeon basically said they can’t get it all, the risks of paralysis are high, and not worth trying. So the plan so far is 15 Radiation treatments (finished week 1 this past Friday) and I am on Sutent. A systemic pill developed with RCC in mind, It has been a “real miracle pill” for years for people with advanced metastatic RCC like me, and it passes the blood brain barrier which made it pretty amazing when was approved.
I’m almost halfway through my first cycle (I’m doing 28 days on 14 off at the highest dosage) now, starting to have some side effects, but nothing bad, just exhausted all the time. The Steroids mess with you big time after awhile on them 24/7. So my life will probably be dealing with side effects of drug therapy if I respond well. Living on chemo cocktails and tons of meds for side effects. But you know what? That’s living. And really, most days lately, even though this sounds completely insane, life is good, I’m really happy to be living it any way I can get. Every minute is sometimes more amazing or profound than the previous, I’ve had some truly spiritual moments, been touched by some amazing peoples spirits, and just been feeling so much love and acceptance everywhere around me. I do have some struggles, my vision is impaired and changes a lot, I really can’t drive or read a book like I used to. I may have to start listening to audiobooks, I miss reading. But all in all, this instant is the place for me, wouldn’t trade it for the world.
I, of course, have so much more to ramble and rant about, and you will definitely hear a lot more about this past year and all the events that got us here, I just had to break the silence, drop the news, and get the ball rolling.
OK I’m a little late, but just catching the Ruger 10/22 customizing bug. I have an old one in stainless that has been sitting around for 15 years unused. I had used it at as my squirrel gun and for plinking, it had a red dot and Butler Creek folding stock. Nowadays in NYS you can’t have a folding stock with a pistol grip and detachable magazine without registering it as an “assault rifle”, so I had to change the stock. Then I started thinking, what else could I do to make it fun to shoot again. Well that’s when the trouble started… So, since we have been snow bound and I haven’t been trap shooting lately, I took all my disposable income for a month and decided to rebuild her, just about everything except the receiver has been upgraded. Here is a pic of where I am at now, and a link to my build page. Pardon the cheap scope rings, they are just temporary.
OK, I have officially surpassed once a year blogger and advanced to The Biennial Blogger!
As if life is not hectic enough, since I last posted here, my cancer came back twice and I have had two surgeries as a result. Both of the tumors were in my skull, top left of my forehead. So now a good piece of my forehead is titanium mesh, Jing, a super nice and cool woman I work with, gave me the superhero name of “mesh head”
Most recent surgery was in Feb last year. And even though radiation and chemo aren’t really effective for RCC, they gave me targeted radiotherapy to try and prevent it from coming back again there. Well end of last year I was having crazy symptoms, I was going to Doctors and could not get a straight answer as to what was going on.
And of course a couple weeks before Christmas I felt a new lump growing on my forehead. First an MRI, and results were not definitive. Then a bone scan, still not 100% sure what it is. Now we are going to do a biopsy. Maybe it’s just me, but a new bump, inches away from where tumors appeared twice previously, seems to be a no brainer, it’s a metastatic RCC lesion again. But, we will know for sure pretty soon. I’ll keep you posted, I must know a few people who check this site once a year or so!
OK, I’m gonna share a dirty little secret. Being a linux and formerly unix sysadmin for about a decade now, it’s a little embarrassing… For the last 18 years my primary desktop has always run Windows. Yes, there it is, I said it!
But a few weeks ago, I threw a new system drive in my computer, swapped my data drive, and installed Pinguy OS and I’m not looking back. I’ve been using Pinguy 10.10 on my work laptop since February and it’s proven rock solid. But 11.04 on a fast desktop is incredible.
I installed about 50 extra apps I can’t live without, transferred 500 GB of data from my old drive to a data drive, and have been playing with it non stop. It’s not lightweight, but it’s still snappy. CPU’s are fast and memory is cheap, so I see no need to run a light desktop shell. I’m generally not a big Ubuntu fan, preferring rpm based distro’s, but I can really say this is the nicest linux distro I’ve ever run. The other upside is I actually spend more time on my work laptop than my personal computer, so it’s nice to have everything the same. I already have to work in six different *nix’s at work, so simplifying the GUI OS’s I deal with is a welcome change.
Lots of eye candy if you want, intuitive apps, tight integration, and stable. Keep in mind my favorite window manager has always been enlightenment, so I expect a lot from my desktop environment. I have a dual boot set up, small windows partition, as there is one app I need that doesn’t run in wine and there’s no linux equivalent. So once a week I’ll boot into Win 7 and enter my new comics into the database, it’s a time consuming process anyway, so an extra 5 minutes rebooting a couple times isn’t that bad.
And a note on hard drives. I have been using Hitachi drives for about 7 years now in a few computers and they are great drives. All I buy now. Fast and reliable, don’t run too hot, and they last. A little noisy but that doesn’t bother me. OK kids, there you have it, my fave distro of 2011, give it a try, I highly recommend it!
OK, without getting into all the background, a lot has been going on lately in my life. Ten days ago was the two year anniversary of the first surgery I’d ever had, where they removed my right kidney, due to a tumor that had been growing for decades. Well it was the typical renal cell cancer, but some of it was an aggressive type and the renal vein was involved, so it led to a T3 and not a very good prognosis.
Last weekend I went kayaking with my two sons and a friend from work. I hadn’t spent time with both my sons together since before my diagnosis, and even though I see my son Danny as often as I can (he’s 17 and active in sports and has a gf, social life, etc – So I often joke it’s easier to get an appointment with Obama), I think of Sam, my oldest that I raised for almost half his life, quite often. Well the trip was great, and I think we all enjoyed it, my next post will have photos and the whole story, I promise. Needless to say, the day before the trip, I was hyper emotional, I was reading everything on charitywater.org and watching all the videos there, and I ended up crying like a little bitch. Not that’s there anything wrong with that It was obviously displaced from other concerns, I’ve been to very poor third world villages painting schools and fixing roofs, and also seen plenty of pain and suffering and death first person, but when I have serious unrest in my personal life, I can be overwhelmed with empathy or emotions quite easily. Of course there is an opinion in the field of psychology saying that can also be an indicator of depression. But that’s a can of worms we won’t open as I prefer to use lures when I’m fishing…
Then this Wednesday past I had a chest/abdomen/pelvis CT scan to make sure there are no metasteses or new tumors. A CT scan is no big deal, piece of cake, it’s the anxiety until the followup when you find out if everything is OK, that’s a little nerve wracking. Fast forward to today- riding the train home tonight, it was actually quite empty. Very unusual, my train is always very crowded, but I think hurricane Irene approaching us this weekend and all the undue panic surrounding it accounts for that. People left work early to prepare or leave town. Anyways, a woman was sitting across from me with a very cute and active infant boy in a stroller and a little toddler girl all dressed up in a little blue gingham dress and maryjanes. They were both cute as a button, I asked how old the baby was and remarked how beautiful he was, and his proud Mom said three and a half months with a big smile.
I put in my earbuds and started listening to a podcast, I mostly read on the train, but I had finished this weeks book yesterday and forgot to select a new one off the shelves and put it in my backpack. Every now and then I glanced across the aisle, and smiled, watching the little girl hold the babies bottle and press it against her wrist twice, no doubt mimicking what she has seen her mother due prior to every feeding. She was lively and happy, and the baby seemed very alert, they were all 3 obviously part of a healthy, loving, and nurturing family. At some point, I had a hard time holding the tears back. I felt that I wanted to say to this woman “Enjoy your children and spend every moment you can loving them, teaching them, and at the same time learn about the joys of life from them now. You never know when you may be facing the end of your life and your children will be grown and have their own lives that are full, the times you share together becoming rarer…”
After debarking at our little train station, G picked me up and we stopped by Walgreen’s so I could buy a pack of smokes. I know, I know, cancer and smoking? Another can of worms we’ll leave for a later date. The minute we pulled over in the parking lot, my son Sam pulled up right next to G’s side of the car as I was opening the door. I sat back down, she rolled her window down and we started chatting from car to car. We saw him a few nights ago at the famous Romeo’s Pizzeria, where we both frequent as how can one not enjoy the amazing creations of Romeo? Everything is made to order and with the freshest ingredients, served up in huge sized portions. So, I went from barely speaking with my son and seeing him a few times in three years to spending time with him and seeing him like 4 times in the last two weeks! Honestly I can’t think of anything that has made me this happy and optimistic in a long long time. If you are a long time reader or go back to my posts seven or eight years ago when I shared very regularly, you’ll know we were close. I often think that raising him alone for 8 years was one of the hardest things I have ever done, and I feel I fell short in many ways, but seeing him doing well as a young adult now is one of my proudest achievements. In fact, really all four of my kids turned out to be wonderful people, kind, intelligent, responsible, loving and well loved individuals, each with their own very different personalities. Although I know I have touched many peoples lives in my time and had many dear friends, I’ve even saved two peoples lives, but nothing comes close to the feelings of pride my children evoke.
So, not a fact filled or interesting post, but I needed to think aloud and look at the pattern of my feeling so vulnerable lately. And of course I have no filter and will bounce almost anything off complete strangers, so this is my place to do it. If you think this stuff is too personal, too boring, or you don’t give a shit, feel free to fuck off and read something else. There, is that the Steve you know and love? Really, the site IS called sysadminhelp.com, I’m a sys admin helping myself, and who knows, maybe others as well. Soooo, with that little tidbit, I’m going to end here and catch up on some emails. I cleaned up my personal inbox, it had over 12,000 messages in it, I had it empty, every last one filed or deleted, and in a mere 3 weeks I’m up to 575 messages that need attending too. I need to make more filters…
K all, toodles for now and for you New Yorkers, get your rain gear ready!
So even though I stayed up waaaay too late in Friday night, and late last night, I woke up at 6 this morning. Then, without ANY coffee in my system (I was running late as usual) drove up to Montgomery, NY to see my son Danny in his first MTB Race. Funny it was right up the road from where I worked at Stewart Airport, near Johnnies Pizza if you know the place. Danny has been into every sport, his last organized one was Lacrosse, but he’s been a bike nut for years now, I guess a passion for two wheelers runs in the family. I’m glad one of the kids is athletic, myself and Sam were definitely not into sports. I played a little frisbee and hacky sack in my day, and was a pretty good skateboarder, but that’s about it in that department.
It was a 40 mile race of two laps, and he was riding the first lap, his teammate taking the final one. Each lap was 8 miles on fire roads and 12 in the woods on trails. Danny did really well and came in a little under two hours. His team ended up finishing fourth!! Congratulations to the team. Here he is coming up to the finish line. So it was a nice morning and a good way to end off a quiet weekend.
And I know, I haven’t posted in over a year. Haven’t had anything to say I guess
Today was a nice day out, not too hot, big fluffy cotton candy clouds drifting across the sky…
And a better day, got the results of my x-ray and ultrasound.
No New Cancer!
Now I need to be even more strict with my diet and, barring any symptom, I can breath a little easier to the next round of tests in November. It’s relieving to know I can enjoy this summer without the hell a metastasis would bring to my world.
K, haven’t written in ages, because it has not been pouring out, I have to think to write now, when that changes again, I’ll write regular, pinky promise…
To be brutally candid, I’ve had this thought lately- When I used to go to a certain 12 step group, after awhile it gets tiresome seeing so many people you know die (junkies have a habit of doing that) and even outside of there, acquaintances and friends were still dying. So now I go to a cancer support group, and those people are dying left and right too… So I start to wonder, why am I always around so many people with a propensity towards an untimely death? I believe I wholeheartedly love living each day as fully as possible and am in constant awe and amusement by every passing moment at times, so why me?
If there is supposed to be some sort of lesson here, am I a student or a teacher? Methinks probably both, and that too is always in flux. It does feel like as one lives longer and sees more and learns more, the mind is like a database, and you’re cache takes a lifetime to build, so the fuller it is, the more efficiently you can access data. And recent studies of the brain’s capacity as you age see to bear this out as well, but I digress, enough for now. More to come.
Well, so much has happened in a little less than a year. My oldest son who lived with me turned 21 and my child support went up $1200 dollars a month. And then my tenant moved out and the cottage needed repairs, new flooring, carpets, and a paint job. I was in trouble. At precisely this time wall street got a little too crazy in their asset backed securities and derivatives money grab, so the market was crashing and real estate prices plummeting. I had just started a new job 5 or 6 months prior, back in the Sys Admin saddle again. Working in a small shop with CentOS on intel boxes with some heavy Xen virtualization going on. Glad to be in an office again but a small shop where you do everything and have no backup is no fun. You’re on call 24/7 365 basically.
Problem is with a less than stable employment history and a couple 90 days in my credit history, I couldn’t re-fi to get enough money to stay a few more years until a couple more kids turned 21. I also looked into cashing out an investment and was told it wasn’t an option. So, since the main house needed so much repair it was in essence a knock down, we just stopped paying the mortgage and started waiting for the axe to fall. After not paying for a year, I received a foreclosure complaint in June of ’09 and answered it myself at the supreme court. We started looking at apartments a few months prior and were dismayed at the shit-holes that were in our price range. The problem is we have Sid, and although some places take dogs, they often have a weight limit, they want small dogs, not 80 pound high drive GSD’s as tenants.
Well we found a great old pre-war building a guy I work with recommended, he has lived there for like 5 years or so. We got approved and saved up our deposit and first months rent along with extra for moving, etc. I had a doctor’s appointment mid August to get an ultrasound of my liver to make sure it looked OK. The tech said she saw a “little something” on my kidney. That little something was a 9 cm. tumor that I was told was almost definitely cancer and I would have to have my right kidney removed. Friggin’ CANCER, I forgot to mention we also had a motorcycle crash down around Chinatown and couldn’t afford to fix the bike, so we are definitely not having a good year so far. I went down to Sloan Kettering and met with Dr. Paul Russo, who is on of the best surgeons in the world when it comes to renal cancers. We scheduled an appointment for surgery the next week, on August 26th.
I went through the surgery, stayed in the hospital two more days (loved the morphine pump the first two days) and went home to recuperate. Knowing we were moving in 3 weeks and I hadn’t packed half of the stuff up I’d accumulated in 18 years of not throwing anything out was a disconcerting thought. Luckily I had moved my shed next door to my Mom’s property, so I had plenty of room for metro shelving and storing stuff we couldn’t bring but I couldn’t part with. I packed a little here and there without bending over, and we hired 3 guys and rented a truck and made the big move, from Mahopac, where I’d lived in the same house the kids were raised in for 18 years, to Sleepy Hollow. The move went pretty smooth, the poor guys carried 37 boxes of books up 6 flights of stairs to the 4th floor!
Here are a few pics of the building and the neighborhood. OK, that’s enough shocking news for one update and I’m glad I got this post in to keep it just under a year since my last post. I could be the once a year blogger… Although I’m sure many others would want to share that title. I’ll try and update again and tell you what else is new.