Tuesday, August 7, 2012

Back to the drawing board

I’ve decided to start writing on this blog again. Maybe people will see it maybe they won’t. At some level it really doesn’t matter. I hit a snag n my recovery when I hurt my back lifting weights last Sunday.  I cried like a baby. Anyway there is a perspective here I missed. I can’t track the challenges I am going through and can’t leave a trail behind like Arne Saknussemm.
It’s back to the drawing board with back exercises and core tightening before I can start hoisting the weights I was banging out.

Friday, December 23, 2011

The old axiom “I wrote you a long letter because I didn’t have time to write you short one” may apply here, but I am anxious to let you know stuff since you’ve been with me from the beginning, but let’s start with important things.

This is me before chemo started. I’m handsome and frankly wonderful -- the hat notwithstanding.

This is me before chemo. God I'm

This is me after chemo. I'm hideous!

I feel tempted to write this long, long thoughtful essay on the ups and downs of cancer or tell you of some life changing epiphany I’ve experienced. Here is my epiphany: I would never trade this cancer experience for anything and I wish it never happened. Kind of weird huh? Paradoxical for sure.  

I am a questioner and I’ve always questioned the role of God in our lives or even the existence of God, but I know one thing for sure – there are angels. And they’re called nurses. Let’s start there.

The nurses who cared for me on the cancer ward at Christiana Hospital and the Medical Oncology Hematology Consultants office are wonderful, giving, and caring. Their jobs are extraordinarily difficult as many of their patients have the deck stacked against them before the fight even begins. And yet these angels drive on with a love for their patients that is as remarkable as it may be tragic (in a Shakespearean kind of way). I don’t understand how they do it. They all have big loving hearts, yet every week when you read the obits in the morning paper, someone they probably cared for dies. It would break my heart if I did that. I recently went to visit the chemo ward sporting my new head of hair and one nurse said to me, “We are so happy when patients that we have worked with come back to visit. It shows us all that effort works.”
I’ll tell you something else about nurses – they become family and see you at your worst and most vulnerable. One time I was taking a shower and mistakenly pulled the red emergency cord, which brought a nurse running. The poor kid was a new nurse and she had to experience my nasty 54 year-old naked body in all its glory. I think her eyes burned.

Cancer doctors, I’ve discovered, are completely focused and relentless in their pursuit and destruction of cancer cells. But don’t get confused like I did at first -- they are not regular doctors. These guys and gals kill cancer – they do it well and that’s all they do. They are modern day gunslingers with chemo bags instead of Colt revolvers. Thank God. If you ever get cancer find a good one.

Throughout this journey people have said, “Bill you look great.” I’m pretty confident that the rest of the sentence, which is always unsaid, is “… for a cancer patient.” And that’s okay because it’s true.
Here’s the thing – the time to prepare for major medical emergency isn’t when the emergency occurs, it’s months/years before. I looked god throughout my cancer journey, because I showed up to the fight in decent physical condition. I developed a lifestyle of exercise early on and I suspect it was a major contributor to a positive outcome. So if your reading this with a bag of Oreos and smoking you’re tenth cigarette, I d suggest getting some milk for those cookies and stop the f$@*ing smoking.

I have discovered the secret to a happy life. Ready? “The more often you say ‘thank you’ the more often you get to say thank you.” This is absolutely true.

There are no atheists on the cancer ward. I took Communion almost every day while there. ‘Nuff said.

I hate this guy

Talk about a poster child for cancer. I bet Keith Richards  never had a cold. It makes me sick. This is he on one of his most photogenic days. It makes me sick. I bet Charlie Watts hates him too.

Deep calming breaths! In and out whhhhhh ahhhhhh. Om, om, om, om.

Okay I’m back. Whenever I look at Keith Richards I hyperventilate. Where was I? It doesn’t matter.

One of the reasons I’d never trade this cancer experience is the goodness I discovered in people. From the nurses to coworkers, I was bombarded by love and genuine concern. It was all quite humbling, especially when I consider I was probably not worthy of it at all. But it meant the world to me. I will surely pass that along to others.

For the life of me, I can’t imagine what God’s plan is for little kids getting and suffering through cancer. Is it a test for the rest of us? Is this little one so good that God wants them right now? I just don’t get it? Cancer devastated me and I surely didn’t want to die, but I’m 54 and if I had to die, I’ve had a rich life. But what about some little guy (this is non-gender specific term)? Do all the kids at St. Jude’s Hospital provide a universal lesson in their collective suffering that we are supposed to glean and profit by? It doesn’t make sense – at least to me. But I guess it’s presumptuous of me to try to and understand the heart of God, but it is this kind of pain that often impedes people accepting God. Why doesn’t he make it easier?

Cancer, I’ve discovered, is a communal thing – at least it was for me. People throughout my community seemed to enter key moments when they were most needed and leave at moments when others would pick up the ball. It seemed like people came into the process at moment only they were equipped to help with. The cards, gifts, visits, and emails were so numerous that to thank each person individually is Mission Impossible.

The Delaware Department of Labor and the Delaware Workforce Investment Board were far more supportive than I deserve or expected. Loyalty means a lot to me and these organizations and their people made significant deposits in my emotional bank account – I will never forget this.

You don’t go through this without coming out on the other side different. I’m not sure what that means yet, but I’m not the same person I was eight months ago. Maybe I’ll be more patient, empathetic, charitable, and forbearing. Who knows, but I think it starts with working to live, instead of living to work. And that’s an important distinction.

Well I’ve rambled on for almost two pages and I bet your getting tired of reading my self-indulgence. So three final points.

1.     For a lot of reasons, this is the last cancer journey blog. I will be setting up a web page soon that will have a recovery blog on it as well as some other writing.
2.     Family – my family has been wonderful throughout this. Not just my wife, siblings, and dogs, but also the people for whom the word friend is an inadequate description. Special mention to my Mary Lou and My brother Fred. 
3.     My wife is better than I am and this experience drove that home. She was courageous when I was scared, clear thinking when I was confused, and loving when I was inconsolable. I could go on about her wonderfulness, but she is going to read this, so don’t tell her what I said.

That’s it. Not overly profound – I know, but it is all nonetheless true. I could go on for many more pages and probably will when I publish the blog in book form. The thing now is to get started enjoying the next set of challenges ahead realizing that each of you are responsible – to one degree or another – for me being alive today.

I love you all,


Wednesday, December 21, 2011

Here we go again.

This is it Boys and Girls. Show and tell time. Where the rubber meets the road. 

Go time. 

I'm going to the doc at 1020 for my scan results and some advice about this abdomen stuff. Okay? Okay.

BTW I've written a chemo song I'll share with you all soon. It'll probably seem more like punishment given my singing ability.

Tuesday, December 20, 2011

I Ain't Happy II

Hey guys Good morning:

You thought I was done whining yesterday? Why I’ve just started. Yesterday was my warm up; now I’m into full-blown rage. I want the opportunity to get hooked on prescription painkillers if this stomach thing doesn’t get sorted out soon. It is moving from minor annoyance to major league pain in the ass.

Tomorrow I’m bringing out my secret weapon – my bride of 28 years – Mrs. Potter. She may seem demure and kind, but she can be a meany if her hubby (that’s me) is hurting. I wouldn’t want to be on the receiving end of her sarcasm once you get her rolling. You get them homey! “Cry havoc and let slip the Kate of war” (if I may bastardize a little Henry V).

Okay so aside from getting the official results tomorrow of the CT scan, which is going to be fine, I need some results or at least a path forward for this platelet thing and stomach muscle pain thing.

Well. I guess that’s it. I’m going back to bed after I kick a dog.

Peace (through preplanned confrontations)


Monday, December 19, 2011

I Ain't Happy

Hey Guys:

Well I’m alive at least, but I’m kind of miserable. Some of this I’ve bitched about before and some is pretty new.

My stomach muscles are killing me; it’s not because I’ve worked them too hard in the gym either. This cough is still hanging around, and I’m losing my patience with all this “recovery” crap.

I know there are people who have it way worse than I do, but they’re not me and I don’t know them, so I don’t care.

Here is what I think is going on:

1.     The muscles around my stomach never healed correctly from the bowel resection. That’s because we started chemo immediately after the operation and therefore, my blood numbers have been low and inconsistent causing the healing process to be dicey at best. I have read that blood clotting is an essential part of musculature healing especially as one recovers from workouts and weight training. The inability of my bone marrow to make a “normal” amount of platelets over the past few months has directly affected the repair of my abdominal muscles.
2.     The cough is also directly related to the production of platelets. It has been my experience that low platelets – for me – result in a runny nose (the proverbial snot-nosed kid) and this runny nose causes a drip from my sinuses into the back of my throat that inevitably ends up in the upper part of my lungs causing me to cough up phlegm. The cough – which is somewhat better thanks to a barrage of drugs – causes a near constant irritation in my abdominal musculature with the effect being a bunch of micro-tears that don’t have the platelets for repair.

What to do about it? Shit, you got me! I don’t know. I am told and I have read that platelets return to normal over time. Once that happens, maybe this will all sort itself out. Luckily I go to the doc Wednesday and we’ll discuss this. My doc told me that the chemo bombarded my bone marrow pretty hard and that “over time” period could be months -- Great, just f@#king great (sarcasm).

I really am in foul humor.

How about this? My doc gave me Singulair to help with all the lung stuff. Last week I get a special pamphlet in the mail from Rite Aide telling me that Singlulaor can make you irrational and angry. Like I need to be more irrational – Jeepers. A special flyer sent via snail mail really kind of freaked me out.

I have more whining to do, but I’ll let it slide for now because I’ll become obsessed. Yikes.

Talk to you guys later.


Friday, December 16, 2011

No POst this today/weekend

Hey Buddies:

I ain't got nothing to say today, so I aint' gonna say nothing. Nothing I tell you! Kind of tired -- feeling okay. That's it. I ain't saying nothing else.

See ya Monday. :)