Tuesday, April 30, 2013

toenail story


The next few posts are going to take a weird turn. There are some stories I didn’t put in previous blogs that I want to share and this seems like as good a place as any. So here goes.

A few months earlier I had torn one of my large toenails, instead of carefully cutting it nice and square like all the books suggest. By itself no problem. Well they (the mythical they of almost every good story) tell you that because, unless you’re lucky, there is always a tiny piece of toenail under your skin that will turn into a dagger as time goes on.

This little dagger will slowly, inexorably push its way up, turn the quick of your toenail a delightful shade of red and before you know it, you’re hobbling around like a three legged dog; it’s miserable.

While miserable and excruciating you can take care of it with a certain yoga flexibility and a good set of pedicure tools unless you have low platelets and it all turns into a dicey proposition.

I go see my primary care doctor and she looks at it and says, “Hmmm. How low are platelets?”

“About 37,” I say knowing normal is 150 or better.”

“You should probably go see your oncologist about this, with platelets that low, you could bleed all over the place.”

I don’t know why, but when she said it, it made perfect sense. Coincidentally, I had an oncology appointment the next day.

After the obligatory, “Well you look good, and the platelets are low, but climbing back.” I show the doc my foot.

Well he studies it carefully, crosses one arm over the other and puts his hand to his chin as if the answer to cold fusion is rattling between his ears and says, “You need to see a doctor.”


Monday, April 29, 2013

ready, set, work


Good morning all:

Well ready to start another week.  OOOHH I can’t wait.

Actually today won’t be too bad. I have a breakfast meeting at 0915 in Greenville and then I have to drive to Dover Delaware for a noon meeting, then that’s pretty much it. Cool huh?

I usually take vacation tine in May to putter about the house and get my yard ready. Always have. This year I’m going to try my hand at bathroom remodeling. Should be pretty fun. I went and bought a book about tiling and I’m gong to throw some money and undoubtedly a few false starts at that.

I can hear it now. All my golf terms coming out, Godd$#M it, mother F*#@er, and so on. I hope my platelets are good to support all the hammered thumbs and inevitable cuts that come with a first shot at this undertaking.

I washed, compounded, and waxed my truck the other day. Mundane huh? Kinda. But in the pantheon (wrong word, but I like the sound) of post cancer tasks it’s a big deal. I did it all by hand and couldn’t have last year. It came out like an amateur did it, but that’s okay. It’s clean and shiny – mostly.

What else? I guess that’s it for now.

Friday, April 26, 2013

support group thoughts


Good Morning All:

Sorry I didn’t get back to you yesterday. I meant to, but I just never got to it. I was busy at work putting together some stuff for a veterans thing I’m doing at work.

Okay, so here we are. I went t my group thing at the Cancer Support Community at first it was kind of strange. When I was sick I never enjoyed group all that much because they seemed like a bunch of whiners. Not only that, I’m kind of selfish so I want to monopolize the conversation. 

Anyway so there I am in the same exact chair I sat in 18 months ago – an old under-stuffed leather thing that’s has too many people empty their soul while sitting in it. It must be a tortured piece of furniture, or bored. So like I said, I initially felt kind of weird because this is a group for patients/survivors – I thought survivors never come.  Turned out I was wrong.

I imagined all these people fighting for their lives and I’d wander in big and healthy sniveling about a lack of meaning at work and these poor sons of bitches thinking, “That dirty dog, I wish I had that problem. What a baby.”

It of course turned out much differently. These folks were actively engaged in telling me what to do and how to achieve some balance and peace. Oh it was like pit bulls on red meat. I think they loved it as much as I did. It was a real perspective changer.

So I have some thinking to do about how to better deal with stuff. It was very worthwhile to and hang with people who are on the path I’ve walked. I was able to give some advice to a Non-Hodgkin’s Lymphoma rookie and was able to show her that this stuff is not a death sentence.

I guess that’s. See ya.

Bill

Wednesday, April 24, 2013

More to follow I have to formulate some thoughts


I went to a Cancer Support Community group session last night. It was well worth my time. With my buddy dying and other things going on I needed perspective. I’m gong to start going every week for a little bit. 

Tuesday, April 23, 2013

graduation speech


So there I am last night pontificating from the stage as the guest speaker for a business school graduation for a bunch of medical assistance, dental techs, and massage therapists. I tell them that lifelong learning is essential today and use as my example oncology nurses. I tell them that oncology nurses are the best of the best and one of the things that separates them from others is their dedication to life long learning and off duty school and blah, blah, blah.

Well anyway in the back of the audience is – you guessed it – one of the nurses that saved my life when I was in the hospital. She told me later that when I started speaking she started jabbing her husband in the ribs saying, “That’s one of my patients.” 

After  diplomas were distributed and I shook every graduates hand and reminded them of how important they are (my trials through the American health care system firmly in focus) I went and chatted with the nurse and her family for a while. It was wonderful.

Just a quick story about how small the world is and a reminder that I need to run by the cancer floor more often.  

Monday, April 22, 2013

neuropathy, speeches and counseling


Good morning Posse:

It’s that gray time of day just before the sun inches up and I am contemplating the week. A couple of things are going. I don’t have lot of cancery things to report today. Things seem to be going okay, but it still seems like it is taking longer to recover between exercise sessions than it should.

Neuropathy seems to still pop up from time-to-time and I had an episode this weekend. I started to go for a run Saturday, but my legs weren’t responding as well as they should. Nothing serious, just inconvenient.  So went I home and ate Doritos. Last week the ground moved fluidly under underneath my feet; yesterday it was a trudge. Jeepers.

You all probably know I am the world’s biggest hypochondriac and I’m convinced every bump and ache is a lymphoma counterattack. My wife has suggested I go to counseling and I think I will. I’ll check my insurer today and see what the hoops are I have to jump through.

I have to give a graduation speech tonight as Harris School of Business at 6 p.m.  This is one of those times when my ego got in the way and I said yes, when I really want to be home gardening. Oh well.

Besides being cathartic for me it turns out others are reading our blog to help them make it through their cancer journey. Pretty cool huh?  

We bought a new coffee maker this weekend it’s a single cup unit that does not use pods. I like it because it is cheaper than my Keurig K-cup thing, but there is a design flaw. Unless you use a taller cup the drip of the coffer is so far away from the mug it splatters all over the counter. I guess that would be a counter attack (hehehehe).

That’s it for today.

Bill

Friday, April 19, 2013

Friday

Did I tell you my brother made out a-okay at the doctors this week. His supposed cancer turned out to be polyps and everything is good. I may have mentioned it, I just can’t remember. I guess I could go look on an earlier post, but I am overcome with laziness. Ho hum.

Ho hum a great Kurt Vonnegut staple in his writing. Kind of a sarcastic yada yada yada from back in the day. Ho hum.

I have to get ready for work soon and I have several pre-shaving internal debates going on today.  Very important stuff. Should should I were jeans or khakis; should I run at lunch or just take it easy since I ran yesterday, and the day before, or is it loafers or ugly hiking shoes today. I don’t know.

 Speaking of running --  I’ve been hammering out some miles this week. I’d like to get to 20+, but I don’t want to push it too much. I’m at about 15, maybe a little less.  I can knock out five tomorrow to get me to 20. 

I guess that’s it for today -- ho hum

Bill

Thursday, April 18, 2013

nothing special taking a day off


Well:
I was taking a look at my work leave balance and I have oodles of vacation. Oodles I tell you. Well I am writing this knowing my Verizon broadband thing doesn’t work worth a darn this morning. I’ve had lots of connectivity issues as of late.

Back to my leave. Well with all the oodles I have I decided to take a day off and maybe go fishing, or mowing the yard or reading or doing nothing. Regardless, I ain’t going to work.

I may be forced to clean my home desk today; I’m kind of at the, I can’t find anything phase of the operation. Shoot.

Well I’ve finally got a little less anger about Melissa’s death. It sucks for sure, but there really is nothing I can do, but mourn and drive on until the day I leave.

The karmic joke continued yesterday when my brother, who should have every health problem there is due to diet and years of smoking, dodged the reaper again. Not a problem, but some polyps on his larynx. No cancer no nothing. A truly lucky bastard. I hope he realizes how truly lucky he is. s

What can I say.

If my connectivity issues ever resolve themselves you’ll read this. If not, you’ll think I’m lazy.

Peace to all

Bill

Wednesday, April 17, 2013

Tuesday, April 16, 2013

Running gooder

After more than a year and a half of trying, it seems I’ve finally relearned how to run. It wasn’t easy and it wasn’t fun. It was a long plodding mess, devoid of the smoothness, which I once was able to achieve from the simple act of putting one foot in front of the other.

Notice I didn’t say quickly; running, I guess, is a matter of perspective.

Anyway, my six-mile route took me through a couple of swanky Wilmington neighborhoods where I wished the Monkees “Pleasant Valley Sunday” were (I wonder if Monkees is a plural?) humming on my IPod. Instead, I was jamming to some Aerosmith, Bad Company, and an old one hit wonder, Andy Pratt and some other hubbub.  

I plodded through the swank and approaching Marsh Road I hung a left, crossed the deadly “Frogger”-type road, ran another 50 meters and crossed back to entrance to the Northern  Delaware Greenway. And his is where it happened.

After struggling for more than two years, the ground began moving under my feet, my breathing less labored, and the objects in my peripheral vision seemed to smooth and pass behind me as if I glided amongst the terrain. I experienced this before in my life, but it was long ago and seemingly far away (If George Lucas will excuse me). Though this didn’t last more than a mile, it was the best mile of mile life.

Admittedly, I’ve run in many more beautiful places. I’ve stood atop a mountain top in Helena MT. with a late spring snow pelting me; and run the switchback up the world’s most crooked road in Grand Junction, Colorado’s National Monument, and trudged up Rattlesnake Hill outside Reno, NV, but those runs, as grueling and as beautiful as they were, never symbolized the victory of spirit and soul the 10 minute stretch along the Greenway did.

I guess that’s it for today. More tomorrow

Monday, April 15, 2013

coming back


I can feel myself coming out of my funk. That’s a good thing.

This surviving cancer while other folks don’t, kind of sucks. Not that I want to be dead, but I’d really them to be alive. I’m still a bit bowled over by the death of my friend, Melissa. Her dad sent me an email last night saying good things about me and saying arrangements had not yet been made. As some of the treatments were experimental there is a time lag because there is an autopsy to study her for lessons learned.

Back to me.

I got up at about 0500 and thought I should start my morning workouts today. Well I realized when I got out of bed at 0548 that wasn’t going to happen. I had coffee to drink, dogs to feed, and a blog to write.

I’ll run at lunch and hang around the office all stinky as a form of olfactory (this is spelled wrong I think) protest against the powers that be. To continue, there are some things I need to do this week.

  • ·      I have to figure out my leave balance – there is this web-based site you can go to that will tell you, but I can never figure out how to access the damn thing, so I have to go beg the HR lady to tell, and it is always the same conversation.

“You can check this online you know.”
“I may check this online, but I cannot because I am incapable,” I remind her. It’s always the same dance.

  • ·      Make some headway on a big vets project I’m working on. Need to do some strategic thinking on this thing. I’ve been way to in the weeds.
  •  
  • ·      Wash, compound and wax my truck.
  •  
  • ·      Send out some book press releases about my superb book available at most ebook retailers.
  •  
  • ·      Figure out the escape plan tasks and get started on them.
  •  
  • ·      Pout – No general reason, still not 100 percent positive at this point, but pouting sounds like a good start.
  •  
  • ·      Finish fixing the railing on my porch
  •  
  • ·      Mow something


You all see a trend? Only one work task. Huh?

I guess that’s it for now.

Peace to all,

Bill

Friday, April 12, 2013

Melissa Left

She died yesterday at about 2:30 PST leaving behind an adult daughter, a young son, and a crying old friend. Fuck. In the picture, she’s on her way to her first leukemia  treatment. I told her to wear the coat so the cancer cells would die from embarrassment. I love her and will miss her. I have to go to work to a stupid meeting, but once again perspective hits me in the face.

Thursday, April 11, 2013

One of the original chemo 13 gang is gone.


Guys:

One of the original chemo 13 gang is gone.

I suppose I should have some profound thing to say today, but it’s too hard. My dear friend lost her fight and she is either gone or soon will be. No amount of prayer can stop this now; it can only prepare her new path for her. So if you have one left, say it for Melissa.

I suppose cancer survivors/recoverers (if that’s even a word) probably meet a lot of people in their trek and several will be gone sooner than later. This is the third or fourth person who shared this path with me that are now on a different trail, one that treads silently somewhere else, the footsteps only heard on lonely nights with the rustle of a leaf, or the flitting of a small birds wings. And we, earthbound, only get to wait for our turn to join them in some in some future, that to them is a blink of an eye, but to us a distance measured in minutes, hours, days, and years.

It’s all almost too much to bear.

I keep thinking of John Donne’s poem, even though my pain right now is more personal than his poem suggest. I placed it below for your convenience

'No Man is an Island' John Donne
No man is an island entire of itself; every man
is a piece of the continent, a part of the main;
if a clod be washed away by the sea, Europe
is the less, as well as if a promontory were, as
well as any manner of thy friends or of thine
own were; any man's death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee. 

Wednesday, April 10, 2013

Not nearly as funny as I’d hoped, sad in fact


This will be a long note. I hate long notes. I never read them.

One year back at work. Wow!

I’m not sure what I think of it all. I’ve put off writing this note; I was waiting for an epiphany that never occurred. You’d think a year would create a tidal wave of good mojo, but I am frustrated I guess.

My wife gave me an out a year ago. She said I could stay at home and she’d work for a while. It was very tempting, but at the time I felt a deep debt to the organization for supporting me while I was sick. As time passed on and my workload increased to before cancer struck levels, I felt my balance sheet changing and after a while my, emotional debt felt “paid in full.”

But that is not what I am about – or at least never has been. Something is changing. Fighting for ones life and coming back to the same situation somehow seems meaningless. Then again, maybe this isn’t about meaning, or perhaps I’ve just been looking at it in the wrong place. It’s hard. You spend the majority of your waking hours at work and you can’t help but be tied to it in some respect, but then again we had this great saying in the Army, “Graveyards are full of indispensible men.” So …

My dear friend is very sick and it is likely she will not recover. I bet she wishes for a meaningless job. So what the hell am I whining about? I guess it’s a Maslow’s hierarchy of needs thing.

I can’t summon up any sarcasm today. My friend’s situation and my funk are too hard today. I know I should be thrilled, but I’m not. This all probably a bunch of whining to you guys in the middle of the battle right now, and I kinda’ apologize. Hell if I said this to myself this time lat year, I’d hit myself in the head with a book right on my Ommaya.

I’ll be in a better mood manana.

Love to all,

MOre later


It is my one-year anniversary of returning to work fulltime. I’m a bit stunned actually. I was going to write something sarcastic and witty, but I’m in a funk. A year? Jeepers. Wow! Too much to digest actually. For some reason this is a big deal to me. I mean bigger than any other anniversary. I need to really consider this.

Peace,

Bill

but wait ... later


I had planned a long thought provoking rant coinciding with my one-year anniversary of returning to work. And I will later. Too much is going on; can’t concentrate at the moment. Later.

Monday, April 8, 2013

Waiting


This is just a reminder. Wednesday morning I’ll be writing a devastatingly self-serving, thumb-sucking, whiney lament for a wasted year at work.

Until then … My dear friend Melissa continues to fight for her life (I think). There was apparently some good news Saturday.  They figured out what flavor of pneumonia she has. The last note from her family seemed to indicate this would allow the docs to target the treatment. Nothing since  … don’t know if that’s good or bad. Fudge man.

I’ve got  these lyrics from Jimi Hendrix pounding in my head this morning (Okay I know Bob Dylan wrote, but Jimi Hendrix owned it)

There must be some kind of way out of here,"
Said the joker to the thief,
"There's too much confusion,
I can't get no relief.

Ever have those moment when you have something to say, but don’t know what it is? It just kind of hangs in you gut.  There’s something dying to get out, but there is a lot of confusion between your brain and your mouth? And if you say anything it won’t capture the essence of what your spirit is saying.

Maybe I’ll have it tomorrow.

Friday, April 5, 2013

prayer and hope sort of

I’m still in a dark place. Oh well. It’ll get better.

My dear friend with Leukemia is fighting for her life, due to pneumonia that developed. I asked for prayer last night on my facebook page and well ... Those of you of faith will not be surprised at this. All the prayers I asked for last night seemed to have paid off -- at least for now. My dear friend is making a rebound of sorts. Although still on a ventilator, her oxygen saturation has stabilized on she is begin to breath on her own. I think we all know what the equation cancer +  pneumonia often equals. It was minutes after I asked, you and several others responded, and she started clawing her way back.

I guess that’s it.

Peace,

Bill

Thursday, April 4, 2013

Karmic Joke


My funk continues – maybe it’ll end today. Fudge – I say that instead of fuck.

A note from the depths of me pettiness and jealousy – moments in contrast.

We recently got some great news. My brother who has to have some cells (probably cancerous but we’ll know after the biopsy) removed fro his throat next week. It’s out patient surgery, no chemo, no nothing. He’ll be laid up for a week and won’t be able to talk for about that long. Cancerous probably, but the treatment is probably somewhere on mild inconvenience in the spectrum of cancer catastrophes. He is a 45+-year smoker and way overweight. He is the poster child for “this son of a bitch is getting cancer, and if that doesn’t kill, he is a heart attack waiting to happen.”

So anyway, he goes off to gets a CT scan, an echocardiogram, and guess what. The doc calls him yesterday and say, I can’t even express how happy I am that he is fine and yet, part of me is hugely jealous. I wouldn’t wish cancer on my worst enemy, but fuck, I do most things right (pastries excluded) and I’m the one who gets cancer. It kills me. It’s a karmic joke that makes no sense.

That’s not even the contrast that has me befuddled. My dear friend, Melissa is fighting for her life in Seattle from pneumonia that invaded her weakened immune system a year after a bone marrow transplant for leukemia. This is a woman who doesn’t smoke, has great weight, ran miles everyday, and blah, blah, blah good stuff.

If you we doing a blind study and evaluating risk factors the collective body of scientist would look over the to of their collective glasses and say, “Yup he’s screwed.” But apparently that’s not how god sees it. Oh well.

I am terribly glad for him and devastated for her.

Fuck

Wednesday, April 3, 2013

Almost a year

I was gonna write this long diatribe. ... wait here it is in part --

Today is one of those weird days when I am reflective. Tomorrow will be a year to the day that I returned to work full time and right now, I feel as though it is the biggest mistake I ever made. My wife offered me the chance, when I was sick, to stay home. I should have taken it. All the reasons I came back (loyalty, joy, and working on something bigger than me) seem to have faded away into some cesspool of petty jealousy or something else I can’t quite put my finger on it all, but it all seems like I’ve wasted my time. 

It goes on and on about time lost, the parable of the ten talents, I was even gonna throw in some chaos theory for good measure.

 Then I realized my one year anniversary is not until the 10th so I can't snivel yet. I’ll hold it all in ‘till the 10th. Then -- watch out world, I’ll have something to say and it’ll be long.  I just hope I don’t lose all my righteous indignation and creative mojo. I have a limited attention span. I need a vacation. F@#k.

Well at least the Red Sox are in first place after beating the evil empire (Yankees).




Tuesday, April 2, 2013

What a day


Here’s the deal. When I went to work yesterday my boss went on a rant saying I didn’t have her back, and was speaking too much of my own mind at meetings, and not clearing what I said through her.
I was and still am completely stunned.
I won’t get too much in to detail because people get fired for posts on the Internet, but my performance at work has been so “above and beyond,” I should get a parade and not an admonishment. I’m the strongest performer in the office. (I say with humility).
Anyway, I just started crying. I’m not a sissy, but a manly man. I did some research last night and discovered one of the drugs I’m on -- singulair -- is notorious for that. 

Yikes!

Bill

Monday, April 1, 2013

But wait there’s more

It has come to my attention that people are actually reading this thing. Yikes!
Don’t for get to get your book https://www.smashwords.com/books/view/298660 and it’s also available for kindle at http://www.amazon.com/The-Long-Walk-Lymphoma-ebook/dp/B00C43JRKU/ref=sr_1_7?s=digital-text&ie=UTF8&qid=1364853012&sr=1-7&keywords=the+long+walk .

I guess that’s it.

What a shitty day

What a weird crappy day. The only thing good that happened is I am still in remission. Oh gosh! I can’t even describe it. Ever have one of those days when you think the world should shower you with flowers and certificates and all you get is an ass chewing? Jeepers! It makes my ass ache. 

I don’t know what else to say. I’m at a loss. I guess I’ll try tomorrow. Here’s the thing everyone always says I give too much of myself, well that shit came to a screeching halt today!