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
handsome!

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,

Bill

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.

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)

Bill

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.

Bill

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. :)

Bill

new world walking wecord

Wassup My Brothers and Sisters:

Well my CT scan went okay yesterday. I was in and out and back in bed before 0930. No one called me to set up an emergency appointment for the doctor – so that’s good. That’s what happened after the first scan back in March.

BTW I hate my dogs for getting me up so early today. I could’ve slept all morning.

This cough is finally starting to fade and so are the petechiae on my arm, so that’s good news. I’ll have to see how that woks out. Speaking of working out it is my pleasure to announce a major milestone in my recovery period.

I walked for about 45 to 60 minutes yesterday. I strutted from my house at 396 Stafford Ave., Down to S. Dillwyn and took a left; went to Newbrook took a right and waddled all the way to North Dillwyn; then I schlepped up to Mulberry Rd and up this huge hill; took a left at Adelene dodging dogs; met my friend Chuck at the corner of Adelene and Hawthorne (I think it was there, chemo brain notwithstanding); dragged myself from Hawthorne to Elm and back to my home.  (To see a map of my trek go to -- http://maps.yahoo.com/#q=396+Stafford+Ave%2C+Newark%2C+DE++19711-5540&conf=1&start=1&lat=39.68968616572197&lon=-75.72425365447998&zoom=16&mvt=m&trf=0)

Anyway, it was a new record for me since ending the chemo drip. Now that I’ve that under my belt and the CT scan is done it may be time to put some jogging in my repertoire. I may wait to next week after my big doctor’s appointment before I start jogging/running/bike riding, it does seem like aerobic exercise needs to come into the picture.

That’s it for today, Talk to you later.

Peace,

Bill

Off to the scan

Good morning my friends:

Starting the day off with a barium berry smoothie instead of coffee is Deeelicious. I may see of I have any chalk laying about the house that I can mix with berry flavoring so I can have this everyday. Yummy!

Did I mention I’m getting fat? Well I am. At least I’m not saying fatter, the way I did in March. Food tastes so darn good now that I have my sense of taste back; I’m nibbling at everything. Okay I never nibbled anything in my life, I guess I’m woofing it down.

Regardless, I’ve gained a few pounds since October. Need to watch that and at the same time, give myself a break.

Anyway, just thought I’d make a short post before my CT scan.

Have a good day you guys.

Bill

Hanging loose today

Buenos Dias mi amigos:

Well tomorrow’s the first of two big days this month (not counting Christmas of course). I get my follow up CT scan to see if all goes well and get a bead on this unidentifiable lymph node on my lung and one week later I see the doctor for the official reading of the scan.

I’m feeling pretty confident kind of like Jack Burton in my favorite movie Big Trouble in Little China. “Feel pretty good. I'm not, uh, I'm not scared at all. I just feel kind of... feel kind of invincible.”

For the record my other favorite movie is Hidalgo. I have such good taste.

I’m going to take it super easy to today. I’ve still got a little of this cough still hanging around and I’ve got a bit of petechiae going on, on my arm so I don’t want to overdo it today. Petechiae – in case you’ve forgotten – is (or is it are) little red dots that appear from time-to-time on one’s body that indicate bleeding just under the skin. There are lots of reasons for it and it is a favorite word for TV coroners to use. Regardless, a low platelet count is often heralded by a bunch of petechiae. I don’t have a bunch but enough that you can see.

Don’t worry I called the doctor. His nurse said that because my platelets have been at 50,000 for a while it is to be expected (normal is 150,000 or better). She said that if I had any bleeding (outside my body) to come in. It seems to be a lot better today anyway.

I guess that’s it. I really do feel pretty okay. So we’ll see. More tomorrow.

Peace,

 Bill

Work thoughts

“I ain’t admitting nothing today. You can’t prove it and I didn’t do it.”

Oh sorry, I didn’t see you standing there. I was just practicing going back to work.

How this sound? “Current trends suggest an extrapolation of data points more appropriate for further discussion.”  Pretty good huh? I have hundreds of those saved up – new ones I’ve never used before.

This one always gets me out of trouble – “He did it.”

How about this one, “Cough, cough, I am still a little weak from the cancer, but that’s at the top of my to-do list; if I live through the day … cough, cough.”

Yeah that’s it I’m feeling it now.

I’ll be able to use these gems and others like them some time next month and I can’t wait to hang out with people instead of dogs. That’s it for today.

See ya,

Peace,

Bill

Thursday thoughts

Good morning all:

Spent most of yesterday in bed. There are people in comas that do more than I did yesterday, but I think it all helped knock this cough on its heels in anticipation of next weeks CT scan. I plan to hunker down again today.

Told you I was debonair. 

I talked to the doctor on Tuesday and he is real optimistic about the likelihood the lymph node thing on my lung is nothing, but it ain’t over ‘till it’s over. MY blood work – sans platelets – is getting better and my HDL is excellent. Apparently HDL – aka good cholesterol – is a marker docs use to determine the presence of lymphoma; mine is excellent. Also he noted my suave and debonair appearance (not unlike Daniel Craig) as an indicator of things getting better.

I guess that’s it for now. Talk to you later.

Peace,

Bill

Old friends

Good morning my Chemo 13 brothers and sisters:

Doctors report then stupid stuff. I’ve been fighting this stupid cough for some time.  It’s still hanging around and it is causing me no end of frustration. The coughing is also the cause for the abdominal pain so until this thing leaves I’m kind of stuck. Last night was unusually bad, but this morning seems okay.

As a general rule I don’t use names on the blog, but today I think I need to – that’s right I’m naming names. This is a full blown whatever the opposite of expose’ is.  

From L. Timmy watching that we
don't steal his valuables, Chipper and
Bugsy looking at photos and Jayla
pretending she doesn't know these
people

Pretty much the same as above, but this time with Gracie eating.

Denise, Donna, Nancy, and Vito. They're probably talking
about me and how wonderful I am.

Chipper watching Diane play the harp. It was pretty cool!

Vito and Smitty are doing something with the laptop. It must
be okay their wives are nearby.

Sunday Night I had lunch/dinner over my friend’s house and his wife, Diane, went way above and beyond the call of duty making, as Seinfeld would say, “Linner or Lupper.”  It was perfection. There were about twelve of us there and several traveled from pretty far away to get there. All New Englanders, they all talked like I do and were as funny as I think I am.

We were there ostensibly to watch the Patriots play the Colts, but once the photos from three decades ago went flying about, we never really noticed the game. It was one of those weird deals when you haven’t seen somebody for two or three decades and you throw them all together and it is as if you never parted. With this group there was very little posturing; it was mostly about loving each other and telling stories no one would believe unless you had been there. I laughed so hard my stomach was killing me.

So I want to proclaim publicly that I love Timmy, Diane, Gracie, Dennis (aka Vito), Bugsy, Chipper, Smitty, Lucy the Dog, Donna, Denise, Nancy, Cat (this actually is a cat), Ellen, Kate, my brother Fred, and Dunkin Donuts. Thank yo all for going out of your way to make a really special afternoon/evening.

Peace to all,

Bill

A tease for tomorrow's post

Had a wonderful night Sunday
 with some old friends.
That is me and Chip
 Please note the Tee-shirts. 

This black and white photo
is a rare Church photo
there are very few of these in existence.
Most have burst into flames

A new hero

Good Moring Guys:

There will be two posts today. This one and another that will come later this afternoon. This first one though is a little different.

I spent Sunday evening with some old friends (friends seems like an inadequate word and extended family seems too stodgy). Anyway I’ve known these dear people for more than 30 years and I love them all. No kidding. I really do.

Anyway, sometime between the recounting of unbelievable stories and downright lies, we start talking about the big football game between perennial rivals Bishop Hendricken where I went to school, and the evil Darth Vader Academy (Okay it’s LaSalle Academy, but they’re still evil).

So Donna turns to me and tells me that one of the kids on the Hendricken cross-country team is in the hospital with Burkitt’s Lymphoma. After a little finagling Donna gets the kid’s name and his hospital room for me and I give him a buzz yesterday afternoon.

It’s kind of weird though. These people don’t know me and I don’t want to seem like some Penn State predatory. Anyway after I talk to his mom, she let’s me chat with the kid.

He’s one tough little monkey. We talked for about a half an hour about all things Burkitt’s. I won’t tell you his name because … well … I didn’t ask his permission and, as you know, I don’t use names anyway. This kid has been hooking and jabbing in the hospital for more than 90 straight days fighting one battle after another. I thought I had it tough, but I’m a whining baby compared to this kid. He is an inspiration.

As you guys know, I’ll go to the doctor if I have the sniffles – in fact I’m doing that today at 0920. No kidding I’m going ‘cause I have the sniffles.

The point is … I’m not sure there is a point actually. I was thinking I’d try and be a role model to this young man so he’d maintain a good attitude, but it kind of feels like he’s the mentor and I’m the protégé.

I sent him my email and going to include him on future postings to my superb blog.

I’ll write more later today when I get back from the doc.

BTW – Good triumphed over evil as Hendricken beat LaSalle in the big state championship game.

Peace,

Bill

no posts 'till Tuesday

Goooooood Morning Chemo 13:

Well I am just kind of chilling for now and not posting 'till Tuesday when I see the doc about these sniffles, which  seem to be getting better and this stomach muscle pain that seems to be getting worse. Yikes!
 I get this sharp pain across my abdomen when I laugh a lot ( I almost said too much, but it is impossible to laugh too much or too loudly).
Anyway more to follow.

Bill

Looking Good Feeling Bad

Good morning my brothers and sisters:

I don’t have a whole lot to report today. I was in a dark place for a while yesterday. Sometimes this whole trek gets to me. Oh well, no big deal.

Someone recently mentioned that I looked good and not sick at all. Actually I get that fairly frequently. I was wondering why that is since only one of my blood indicators is where it is supposed to be (white blood cells – Thank God). To be fair many are close, but still low. Other blood numbers are just in the toilet, but that’ll turn around with time.

The question remains why don’t I look as bad as my numbers suggest?

I think the difference is three-fold.

1.     I showed up for my cancer battle in good shape. The time to get prepared for a life threatening disease isn’t when you get sick; it’s the months/years before you need to be in shape.

2.     During the worst of the chemo (and it was bad sometimes) I pulled my fat buttocks out the hospital bed and dragged it and my IV stand, up and down the hallways of the hospital walking. I also remember riding the recumbent bicycle in the bone marrow transplant unit with a hospital mask on while chemo dripped into my arm as I pedaled up an imaginary hill.

3.     I’m naturally good looking anyway.

So I guess my point is you can’t tell a book by it’s cover and this book has made a big commitment to getting healthy through doing some right things. The thing is there are times when I just feel lousy and no one will ever know because my outside doesn’t reflect my inside.

I guess this was a cathartic rant; I’m not sure where it came from.

Peace,

Bill