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.

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.

Namaste

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!