Monday, October 31, 2011

Going well, but achy

Well my mailman and I are the only Dallas Cowboys fans in this Eagle infested area so I can’t expect much sympathy today after the Eagles smooshed the hapless Cowboys last night. 34-7. It might well have been 3400 – 7 had time not run out.

Oh well. Poop.

I was able to establish a new world record yesterday after completing a walk around the block. That’s right all the way around the block. I am very pleased. My legs were a bit achy and my toes were still tingly, but even so I made it around the block. Baby steps!!

I’m hoping the leg aches and the tingling go away with time, but if they don’t, well I guess that’s one of those irreversible side effects I’m stuck with. We’ll see. I’m hoping the next few months will tell the tale. The insomnia is easing a little, but I still have very little stamina.

Okay, my bald scarred head is turning into a bunch of super soft peach fuzz. I may be dangerously cute now – well at least the top of my head might be.

This should be a pretty easy week for me as far as appointments go – I don’t have any. I do have some tasks to complete and goals to reach.

  • 1.     Call my health insurer and fight with them over a bill they denied
  • 2.     Call my oncologist to set up my PET/CT can, ask him if really I need to be taking all the pills he has me on if I am longer taking chemo
  • 3.     Go to the office and see Gwen, Julia, Mo, Karen, Lyn, Barb, and the rest of the gang
  • 4.     Call Chuck and see if he wants to go to breakfast with the seniors at the Perkins. It’s nice to go because I am the youngest person there and in the best shape – except for that damned 80-year-old marathon runner – he’s healthy, but makes me sick! The first time I went to Perkins on weekday for breakfast I thought there was a holiday nobody told me about because the joint was packed with seniors.
  • 5.     Walk around the block plus a little more.
  • 6.     Find those darn instructions for the resistance bands and then try using them.

Talk to you guys later.


Sunday, October 30, 2011

Let the baby steps begin

Good Morning Chemo 13

I’ve got this darn cold that’s kicking my heiney a bit. It’s actually more of a cough than anything else. It’s pretty persistent, but I got some of that Robison cough medicine yesterday and I think I have it on the run.

Tough neuropathy day yesterday. I couldn’t get my legs and hands to work quite right, but I guess that they worked at all is a blessing. Sometimes my legs have this plodding quality that makes walking, not painful, but achy. If I were on the “Walking Dead” I be shot as a Zombie. Or better yet I sometimes look like Kramer on Seinfeld when he buys those jeans that are too tight.

I know it’s gonna be a tough day if I can’t wiggle the toes on my left foot. Like today, I can scrunch my toes, but I can’t wiggle them – these are highly technical medical terms I hope you all understand. I’m putting together a companion dictionary for this blog to explain many of these lesser know terms such as “sammi” (short for sandwich) and “this sucks” (this either means hospital food has arrived, or something unpleasant is occurring).

I drift.

Starting Monday I’m going to attempt to get on the stretching bandwagon and take some time to seriously stretch my atrophied muscles and see if that helps. Then here’s what I’m think I’ll do to start the physical fitness piece of this recovery thing.

1.     Monday, Wednesday, and Friday
a.     Stretch my body out using some beginner yoga moves and some stretches I’ve learned over the years
b.     Ride the recumbent bike for 30 to 40 minutes. Once I regain some strength, lose some neuropathy, and improve my endurance I’ll begin adding some short attempts at running to this plan.
c.     Go puke (just kidding not really)!
d.     Stretch my calves, hamstrings, and quads
e.     Putter about the house
f.      Go to a horizontal consult with my staff of puppies and teddy bears.
g.     Walk the puppies a little farther than the day before.
2.     Tuesday, Thursday
a.     Stretch my body out using some beginner yoga moves and some stretches I’ve learned over the years
b.     Workout
                                                        i.     Initially I am looking at using resistance bands
                                                      ii.     Once I feel it is safe, I plan to use free weights and initially do the basic exercises (Bench Press, Shoulder Press, of course I have to do curls, bent rows, and lunges). After 30 to 60 days when I feel stronger, I’ll move to more advanced weight exercise such as flies and lateral raises.
c.     Go puke (just kidding not really)!
d.     Go to a horizontal consult with my staff of puppies and teddy bears
e.     Putter about the house.
f.      Walk the dogs a little farther than the day before
3.     Saturday and Sunday
a.     Special activities such as yard selling, picnics, naps, walking with Kate holding hands, and smooching.

I guess that’s it for now. We’ll see how this plan works. With any luck it’ll help me get up and running faster than sitting around the house. It's all about mitigating side effects at this point, so we'll see. 



Friday, October 28, 2011


Results Say Heart Is Okay

All around good guy and big fan of nurses Bill Potter was told yesterday after his stress test that his heart was A-Okay.
“You haven’t had a heart attack or a blockage,” his cardiologist said. “ The only time I want to see you again is at Wawa.”
The stress test came after an echocardiogram found that Potter had a low ejection fraction. This mystified the doctors, Potter said.
“The docs were a bit befuddled because I am a low risk guy except for my family having some history of heart disease,” he said. “I don’t smoke. I workout regularly and I am not overweight. My resting heart rate is in the 60’s or low 70’s and my blood pressure is usually normal or a little low.”
“He is one of those least likely to get heart disease,” the cardiologist added.
Though thrilled with the news, Potter said the roller coaster of emotions has been kind of hard.
“I really thought I was sunk,” he said. “I had these visions of toting an oxygen tank around for the rest of my life and not being able to do the things I want to do.
“I was also worried they’d have to crack my chest open to fix something. Jeepers, open-heart surgery, can you imagine?  I’ve had an awful lot of procedures done in recent months and I am bone weary -- from them all.”
Even so, it appears to be blue skies ahead for Potter who is in the recovery phase of his cancer treatment.
“My cancer doctor fired me,” the newly minted cancer survivor said. “I went through six of eight blocks (of chemotherapy) and this heart thing threw everything into a hubbub. My doc weighed it all and recommended we stop treatment. I guess he didn’t want to kill me – I appreciate that.
“Now my job is to get my strength back, get my head together, and wait for the cancer drugs to dissipate as I continue to wrestle with residual side effects.”
The results from the original cardiogram are still a mystery.
“Who the hell knows,” Potter said. “Maybe it was the water from Lourdes our friends gave us (In 1858, a peasant girl, Bernadette Soubirous, claimed to see the Virgin Mary at a nearby cave. Waters from the Lourde’s spring are reputed to have miraculous healing powers), maybe it was all the prayers from people we know and people they know, and maybe the echocardiogram was just a mistake. You got me, all I know is I am fine today and I’m not going to waste it.”
Potter plans to continue recovering and taking it easy for the next little while.
“I promised my wife and doc I wouldn’t rush it,” he said. “I haven’t gone through all of this just to blow it in the final stretch.”
Bill Potter can be reached at

Thursday, October 27, 2011

off to stress test


Okay I’m officially cranky. Not only do I have to take a stress test at 0930, which, incidentally, stresses me out, but I can’t have any coffee or breakfast before then. That really stresses me out. Poop. 

I went to see the doc yesterday and we chatted about the decision to end the chemo after six rounds instead of going the full eight. He said given the potential heart problem (low ejection fraction), and the leg issues (neurological damage) the decision to stop after six was the best course of action. It is important to remember I’ve been remission since round three.

That’s it for now. I’m going to have a glass of water – yummy, way better than coffee.


Wednesday, October 26, 2011

short post today

Good morning guys:

Well I’m beat. I didn’t get much sleep last night. I don’t know why; it just turned out that way. I walked a new world record yesterday. I made it beyond the park and all the way to the basketball court, which is about 100 meters further. So I guess it’s fair to say I walked down my street and back home. It doesn’t sound nearly as big an accomplishment when I put it like that. Jeepers.

My calves are aching pretty good this morning.

On my list of things that don’t mean anything to anybody, but me. I have to drop my Fender Stratocaster off at the guitar store to have the plug in jack replaced. It’s real wobbly and causes the guitar to cut out every now and then. The neighbors, I’m sure, think that is a blessing when it does cut out. You see, I really kind of stink at the guitar, but it is fun. I’ve progressed from it only sounding good when I drop it, to a point I can play a song people can identify and then they say, “That’s not how that song goes.” Sometimes progress comes disguised.

I guess that’s it for now. It’s a short post today.

More tomorrow



Tuesday, October 25, 2011

Buyer's remorse

Hey amigos:

Buenos dias. Okay,  I am a crybaby, and maybe I have a touch of hypochondria to boot. I turns out my blood numbers were actually great and it appears my runny nose was not caused by low platelets, but um, er, ah, a cold.  Technically my platelets are still low, but not as low as they have been. After spending much of the past six months with platelets in the 30K to 60K range, having 84K like I did yesterday is quite a step forward (normal BTW is about 160K to 400K).

All my other numbers, such as hemoglobin, red blood cells, and white blood cells, while still low are climbing back as well. Another couple of weeks and my blood should be okay.

From L: Buzz, Harry, Pearl
Yesterday’s attempt at a new world record by walking the dogs around the block kind of fizzled when I got to the park. These darn legs of mine didn’t feel quite right. So even though I walked further than usual, I didn’t make it around the block. Maybe today. Not only did my legs peter out, but also I ran out of poop bags and that could have been disastrous. You’ve seen Harry. He is not one for leaving small “packages.”

Tomorrow is my first appointment with my oncology doc after being fired as a patient (actually I just finished chemo is all, but it sounds cooler to say I’ve been fired). Anyway, it’s a fact that when people buy something big they go temporarily insane during the buying process. When sanity returns, buyers’ remorse sets in.

I’m feeling kind of like that.

I was so excited to hear that my doc wanted to stop treatments that I never considered any other options. If there is a 95% cure rate after five years when you complete all eight blocks and I finished six blocks, what if anything did I lose. Is my cure rate down to 85%, 90%, 5 %, do we even know? Could chemo have been continued if we eliminated some of the more dangerous drugs that might have killed me, or do you need the whole package for any affect?

Don’t get me wrong, I’m not suggesting I run back to the doc and ask for more poison, but then I again I don’t want to shoot myself in the foot either. I have questions about what is best over the long haul. I suspect we’ll schedule the PET/CT scan tomorrow for some time next week, or even Friday. I pray that comes back clean, if it doesn’t then who the hell knows what happens next. Yikes!

I still have this heart ejection fraction thing hanging fire and get my stress test Thursday morning and we’ll go from there. It is all very stress inducing (that’s a joke actually).

Peace to all


Monday, October 24, 2011

Walking and decisions

Well it’s high time you guys were up and at ‘em: Good morning or should I say good afternoon; I mean it is close to 0600.

Okay I got big goings on today. Now get this – I’m gong to attempt to walk around the block with my four monstrous dogs. It will be a new post-chemo world record. That’s the plan anyway.

This death defying attempt will come sometime this afternoon after I go and my blood numbers checked,  go to Dunkin’ Donuts, and er ah take a nap. I’ll probably go to Dunkin’ first and get some fat pills for the nurses and staff at the doctor’s office.

I am really torn about a gift for the nurses on the 6th floor. I was going to get two of those edible creations (one for the day shift, one for the night shift), but I am thinking about making a contribution in their name to AI DuPont or Candlefighters instead. I really want to show my intense gratitude to the nurses, but I also want to help little guys and gals fighting cancer. Since I am on Long Term Disability, resources are tight for the next 90 days.

I can’t imagine how tough the little ones are who go through it all. There were times during my chemo when I was in tears because it was so hard – And I’m a US government certified infantry badass! These little ones … I don’t know; they have to be some tough little monkeys to go through all this.

The nurses. Well you all know how I feel about the nurses who stride the 6th floor like colossuses dispensing hope, medicine, and belief in a positive outcome. They are a special breed; my life was saved and enriched by knowing them.

Well I guess that’s it for now. Regardless I’m still going to Dunkin’ Donuts.



Sunday, October 23, 2011

Some Baby Steps

Good Morning:

Weekends are always hard to write about. There’s not a whole lot going on and Kate and I seem to take it very slow. We went to Home Depot yesterday and got filters for our furnace. Although that doesn’t sound like much, the real deal is we walked around the store for a while. That’s quite an accomplishment for me. Then we went to some kitchen store next to Home Depot and hunted down some K-Cup coffee mixes. Again we walked around a bit. It’s all quite a success.

My legs still feel a bit weird, but hey it’s way early in the recovery process. My runny nose has neither gotten worse nor gotten better. So it seems like my bone marrow may be coming out its stupor and getting to work – stasis is good.

My big Sunday plans include watching some football, eating some cold pizza, and drinking some warm soda. Woo-hoo. If I get really ambitious, I may take a spin on the stationary bike parked in my living room.

I guess that’s it for now.

See ya,


Saturday, October 22, 2011

Paine and Nurses

Good Morning Chemo 13:

Well it’s a great day to be alive. It’s 0514 and I’m feeling pretty good. My legs feel achy, but that’s okay. I walked the dogs to the park again yesterday and that seemed to go well. I did try to jog for about ten feet and man my legs felt weird. It was as if they had never run anywhere before.

I suspect the running thing is going to be a bit more challenging than I thought. Bring it on baby!! I can’t wait to win this challenge. I am reminded of what Thomas Paine said in 1776, “What we obtain too cheap, we esteem too lightly: it is dearness only that gives every thing its value.”

I was reading Paine’s the Crisis for gazillionth time and it really resonated with me. Remember that time your heart got broken and every song on the radio seemed like it was being played just for you. Well that’s kind of how I felt yesterday reading The Crisis. One section really stuck out. The excerpt in question:

·      THESE are the times that try men's souls … Tyranny, like hell, is not easily conquered; yet we have this consolation with us, that the harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly: it is dearness only that gives every thing its value.

The complete pamphlet is at

I am so thankful to the nurses and staff on 6B/6C and Medical Oncology and Hematology Consultants that it is hard to put into words. Since getting cancer I’ve been to a lot of medical appointments and hospital departments dealing with nurses of different stripes, and while all of them were good competent professionals, the cancer nurses are a breed apart. If Christiana is going to stick the nurses in uniforms, the cancer nurses and staff should have a color all their own signifying their unique dedication and abilities – these guys are the best of the best. I vote for camouflage – I always do.

I guess that’s it for now.

Still have a lot thoughts rolling around in my I can’t quite give voice to yet, but that’s coming.

See ya soon,


Friday, October 21, 2011

Small Wins

Well this recovery thing is going to be a bit harder than I thought. I was expecting a gentle sloping of ever decreasing side effects with each day a little better than the day before. That’s not exactly how it’s going to be I guess.

I have a runny nose.

I can hear it now. Turn off the lights and get Bill to the hospital – he has a runny nose. Call an ambulance! He will soon join the ranks of the living dead if we don’t get that runny nose under control!

Okay wise guys.  I have discovered, over the past six months, that a runny nose usually means – at least for me – a drop in platelets. Don’t ask me why, but it does. Usually a drop in platelets goes hand-in-hand with a drop in hemoglobin. You know, the component of your blood that carries oxygen. So anyway, I am a bit anxious. I’ve become a crybaby and it’s probably a cold.

Maybe it’s no big deal. I have to go to the doc Monday and I’ll get updated blood numbers then. Who knows, maybe the bone marrow will get off its ass and kick in today and make some blood stuff over the weekend and all will be fine with the world. I sometimes wonder if my bone marrow doesn’t consist of a bunch of fat guys in stained wife beater tee shirts, eating sub sandwiches, and waiting for further guidance. I imagine a lot of recliners being used in my bone marrow.

Remember two weeks ago when I reported I couldn’t walk the dogs 500 meters to the park down the street from my house? Well we walked that same walk yesterday and made it back without sucking wind. I am very optimistic about that. The thing is though my legs weren’t/aren’t back to normal. It was more of a plodding than a smooth walking motion. Even so that’s pretty cool. I was reading this bio of a young woman who was a college cheerleader and after she got cancer, she lost all motor function in her legs. She had to learn to walk all over again. So maybe I’ve got a touch of neuropathy and might need to teach myself to run again. That’s no big deal – especially as the chemo poison dissipates.

On the bright side of the recovery ledger:

·      I have to shave today. I haven’t had two days beard growth to worry about in six months. I am so excited.
·      My taste buds are returning. Things are starting to taste good again. Yesterday I had a Root Beer and it tasted great. I even had some chocolate last night and it didn’t suck
·      My fingers are getting a bit nimbler. I’ve been working on playing “Folsom Prison Blues” on the guitar for some time. It is an easy song, but my hands haven’t worked quite right. Yesterday was the first day my fingers were cooperating when changing chords. Though very simple, I even have the guitar solo down for the song. That’s kind of a big deal. Baby steps you know!!

My plan is to take it easy today. Kate reminded me last night that I’ve only been out of the hospital since Monday and if I push too hard too soon I’ll be right back in. She’s right of course. I’m still dealing with the blood infection that knocked me into the hospital the last time; all things in moderation at this point (except naps).

Talk to you later,

Love to all,

Billy Boy

Thursday, October 20, 2011

Recovery Goals

Good Morning:

I was trying to figure out just what the heck my goals should be for this recovery period that started yesterday and it occurs to me that there is a lot of work to be done inside my body. Regardless, this is a short list of goals in no particular order.

1.     Stabilize my blood counts – I’m sure I mentioned this, but for the past six months I have been operating in the ‘SAFE’ zone for blood counts as opposed to normal. For example, I’ve been thrilled to have a platelet count of 50,000; normal is three times that number. It’s the same with all blood numbers. Safe and normal are two different things. There isn’t a whole heck of a lot I can do to affect the blood counts, I just have to be patient and let things heal as the poison dissipates from my body.

2.     Get the straight skinny on this heart ejection fraction and try to fix this without the use of drugs – When I was told about the ejection fraction heart problem I have to admit I sat in the doc’s waiting room and cried like a baby. I think I cried more about the potential heart problem than I did when I go the cancer news. In case you guys forgot, your ejection fraction is how much blood your heart moves with every beat. Normally your heart will eject about 60 to 70 percent of the blood in it each beat. My heart does about 40 percent at least that’s what the echocardiogram showed. That has me a bit freaked out because physical fitness/activity has always been a big part of who I am. I need to schedule that stress test for later next week.

3.     Diet Change – Kate and I have this standing joke that she’ll see me driving down Kirkwood Highway with a Whopper in one hand and a cheese steak in the other as I steer my little red truck with my knees. Yeah I need to fix that. I have an atrocious diet. If you cut me I probably bleed sausage gravy.

4.     Lean Muscle Mass – Yeah I need some of that too. Since this started I’ve dropped about 30 pounds. Much of it was excess weight I needed to lose anyway, but much of it was also lean muscle mass. It has become especially problematic in the past two months as my hospital stays became more frequent and I spent more time in bed atrophying. I took a look at myself in the mirror the other day getting out of the shower and I felt like Kramer did in the Seinfeld episode when he opens a smoking room in his apartment and realizes the smoke is destroying his face. He says, “Don’t look at me. I’m hideous.”

5.     Cardiovascular Conditioning – I need some of that too. I would like to run a marathon or half marathon next summer or fall, right now I can’t run to the bathroom without getting winded. This too depends on heart stuff and blood counts.

6.     Why am I here? – I need to take a good, deep, introspective look at things to figure out what happens next. This is probably the most important step of the recovery. You know, I initially scoffed at the idea that this experience would change me, but you don’t go through this and not come out different on the other side. I’m not sure what that means, but things have changed inside Kate and me and we need to figure that out. There is more to life than …

I guess that’s it for now. I have some appointments to make and big thoughts to think.

Love to all,


Wednesday, October 19, 2011

Recovery? Geez now what do I do?

Good Morning Fellow Chemo 13 Gang Members:

Last night was the first night in more than six months that I went to bed and didn’t have some type of catheter sticking out of my chest or arm. It was divine! So divine in fact I slept for nearly 10 hours. I was pooped. I’m still a bit ragged actually.

Kate asked me last night if I intend to keep the blog going now that I am done with chemo. I never gave it much thought, but my first inclination is HELL Yeah!! I may do something crazy like change the background and fix the spelling of the URL, but other than that my plan is to keep going until I get settled back at work in January.

I don’t know what recovery really means, or what is going to happen with the heart ejection fraction, or a host of other things that God will send my way to test or help me. I think sharing these things with you guys and embracing the personal catharsis of putting it into words is valuable – at least for me; I’ll probably bore you to death.

The other thing is there are lessons I can share – hopefully – with other cancer folks who might be kind of lost going through this. I think maybe the blog could be a resource for other folks muddling through. I don’t know maybe that’s my ego talking, but the amount of stuff I’ve learned in the past six months is info I wish I had access to before the first needle prick in my arm.

I guess I’m officially a survivor now. Not quite sure what that means, but I really have to sit back and take stock in next steps.

See ya,


Tuesday, October 18, 2011

In the end

My Gang:

After about 150 days of chemo, more than 600 hours of poison dripping into my body, two months (at least in a hospital bed), and an outpouring of love that is as fantastic in its scope as its sincerity – treatment is finally over and the recovery can begin.

As abruptly as the chemo started, it has ended.

At about 1900 last night my doc recommended to Kate and me that we stop the treatments and begin recovery activities. I was sitting up in the bed Kate and the doctor were sitting side-by-side in visitor’s chairs at the foot of the bed. When he said no more chemo, Kate actually danced in her chair.

I was as stunned as you probably are.  But here are the reasons the doc cited:

1.     My cancer is in remission and has been since block #3
2.     The echocardiogram revealed a potential heart problem that could have a chemo related component
3.     The potential risks at this point outweigh the potential benefits
4.     Pounding my body with more of this aggressive chemo we’ve been using is just too risky.

I don’t know what I was expecting, but it surely wasn’t that. I thought we'd adjust some of the chemicals, drive on, and begin round seven today or tomorrow. I couldn’t be happier. If you’ve been following this blog you know what it’s been like. If you haven’t – well, let’s just say it has been a long tough walk to get here.

What does this mean?

In the near term it means another PET/CT scan to make sure the cancer is still in remission; it means finishing the antibiotic therapy for the blood infection; it means going home (today); and it means not overdoing it too soon. It also means getting the PICC line removed from my arm.

In the longer term, I have some physical issues to work through that may go away over time such as the heart thing (known as a low ejection fraction). It might take care of itself, or I might have to take some drugs, but we’ll see. I also have some neuropathy in my arms and legs that I need to deal with.

My body is beat up and I have to get back in some kind of work shape; hell I can’t stay awake for more than two or three hours at a time without fatigue hitting me square in the nose. As supportive as my employer has been, I’m pretty sure bi-hourly naps are a non-starter. Hopefully the lethargy will ease up as the residual chemo dissipates. We’ll see.

I’ll write more tomorrow after I digest it all. But, that’s it for now!!

Love to all,


Monday, October 17, 2011

Great day

It could’ve turned out to be a really stinky day, but instead it turned out beautifully. Kate and the nurses on the cancer floor made it one of the best birthday’s I ever had.

It started out simply enough with the nurse practitioner (kind of hybrid nurse/PA/doctor) making me a card. Then my nurse for the day came in and put happy birthday on my dry erase board and drew three balloons – one red, one green, and blue. It was simple, yet beautiful. I loved it. I don’t have my camera because I didn’t expect to be here. So there is no evidence.

The number of hugs I got was inestimable – each one a special little piece of love I’ll carry forever. I really was touched. The nurses on the floor made this beautiful card; they all signed it and gave it to me. One of the nurse’s inflated two purple surgical gloves like balloons and wrote happy birthday on them. They are taped to the top of my IV stand; I call them my “happy birthday udders.”

At about 1300 I turned on some football (life is wonderful) watched the Eagles build a lead they would keep for a change and then carried through with my threat to take a nap at the 2nd quarter.

When I woke up, I was surrounded by nurses (not a bad way to wake up). About 20 of them were jammed shoulder-to-shoulder in an arc around my bed. For a second I thought I was in an intervention for bad jokes and these were all the people I had offended (then I realized there weren’t enough people).

They gave me a little cake and sang “Happy Birthday.” And then I did something I don’t normally do – I blushed an “aw shucks” blush. It was all really quite beautiful and I will remember it forever.

A little later my bride of 28 years came to visit with a Seasons pepperoni and ham pizza and a strawberry shortcake birthday cake. We watched the Cowboys blow a three-point lead to the Patriots. We sat together – side-by-side – at the foot of the hospital bed, in the room’s visitor chairs, holding hands, and stealing the occasional smooch from each other. It was perfect – truly to become one of those “hey do you remember that time when we …” moments we will share forever.

Although I wouldn’t wish one day of cancer on my worst enemy, yesterday was a day I would wish on anybody.



Sunday, October 16, 2011

Happy Birthday To Me

It’s my birthday tra, la, la.
This is going to be a great year too. This is the year I beat cancer, recover from all the chemo, and generally get on with life. It’s gonna be great! Hard work; but great nonetheless.

This is the year I write something, that can make you cry. Remember that old song by David Bowie, “Young Americans” when he sings, “Ain’t there one damn song that can make me break down and cry?” Well, that’s what I want to do. Either that or write a dry history thing about the Battle of Cooch’s Bridge. Either way its gonna be great!

This is the year I finally dedicate myself to finger picking on the guitar and play something really cool and complicated, like Al Stewart’s “Road to Moscow,” or something off Van Morrison’s “Moondance” album. Now that I think of it, something off Johnny Winter’s “Still Alive and Well” might be cool.

Oh yeah and I guess I should work too. But you know there are two ways to approach work. One is working to live and the other is living to work. I spent a lot of years doing the latter and I still have cancer and debt. So maybe it’s time to embrace the former and see what happens. I’d hate to end up leading the remainder of life -- in how does Thoreau say it? – …  a life of quiet desperation and go to the grave with the song still in me (excuse the paraphrase).

This the year I renovate my kitchen or get a new house. I hate my kitchen that much. I have this vision of blue and yellow tiling around the cooking area, counter tops, and backsplashes – A kind of vivid southwestern theme with darker, richer blues and yellows. Every tile would be irregularly shaped; maybe I’d shatter some whole tiles first and work with the shards. I’m not sure I even want the surface of the counter perfectly smooth for that matter.

Now for today –

I’ll spend today luxuriating at Spa de la Christiana Care. I’ll be unreasonable with the doctors and nurses. I’ll watch some football. Then take a long nap or two between the 2nd and 4th quarters of the first game. I’ll watch the 2nd game with bated breath as the Cowboys blow an early lead over the Patriots and go down in flames as Tony Romo throws or fumbles the ball/game away.

Kate and I are gonna have Pizza from Seasons followed by an incredibly delicious strawberry, whipped cream cake from that little bakery in the Belfonte neighborhood of Wilmington. That done, I’ll settle in for some really bad Sunday night TV and waddle to and from the bathroom due to some “I only have myself to blame” self induced diarrhea. It’s gonna be great.

I guess that’s it for now.


Saturday, October 15, 2011

Hickman Removal

Mi Amigos de Chemo 13

What a day. I mean it was a good day, but still -- what a day.

After the excitement of the night before when one of lumens on my Hickman exploded and the debate about whether and how to save the catheter ended with a tsunami of saline, I had been waiting for someone to come by and yank the thing.

At about1500 the pre-yanking flurry of activity began. Papers were signed, platelets loaded in the IV (to ensure clotting if things got messy), and Teddy Bears removed from the bed – that’s right Teddy Bears removed from the bed in the room – I wasn’t going to the OR like when they installed the device, the Hickman-ectomy was being done in the room. Kinda freaky huh – to move a fella’s Teddy Bears when he’s just about to get cut in his own bed. At least the bears were put on the windowsill so they could watch and take notes.

At about 1530 a PA from the doc’s office comes in carrying an ominous looking grey steel box about the size of a good camera case. She introduces herself and starts explaining the procedure in great detail. With any luck, she says, the explanation will last longer than the procedure. The whole thing should last about 30 minutes.

She opens the steel box and I don’t know what I’m expecting – maybe eerie vapors creeping down the side of the thing once it’s open, or special instruments for an incredibly complex procedure – at least something with enough gravitas to merit a grey steel box fit for a spy movie. It was laundry – sterile laundry I grant you, but laundry nonetheless. The PA pulls a towel with a strategically placed hole, some other towels, a gown, some gloves, and a mask from the box.

Well she gets suited up in her ‘I’m gonna cut Bill open’ duds and puts her tools on the room table to the left of the bed where she will be working. A nurse from the floor goes to the right side of the bed and holds my hand; she reminds she has been there for every “in room” procedure I’ve had including the very first Ommaya time they tried to access the reservoir – we all know how that ended.

The PA injects numbing medicine around the Hickman’s entry site. I have my head turned toward the nurse holding my hand, and pretty soon the digging starts. Digging, excavating, exploration – call it what you will but it is bull work. You see there are two problems: first, the PA is working in a tiny hole in my chest trying to free the line without damaging it and really can’s use a cutting tool to slice away any excess scarring tissue; second, there is a ton of scar tissue grown around the delicate latex tubing inserted in the vena cava.

So now it’s tough going, the PA has to tug, tear and rip her way through the tissue grown around the Hickman tubing in my chest muscles. Although the area is numbed and I can’t feel any pain, I can feel the digging and tearing of the scar gristle through the numbness.

At a several points in the procedure we stop and re-numb the area and start again. Every time we stop the PA has to refit herself in sterile clothing, gloves, and masks. Because the sterile gloves are flesh toned and covered in blood, she looks like a mad scientist from an old creature feature or a fiend from Dexter.

At about 1700 a food service tech wanders in to drop off my dinner, realizes she’s in the wrong place at the wrong time, drops the tray on a chair walks away – it’s all very surreal. I couldn’t see her face, but I bet she wished she had wandered into different room. Then the phone rings, the nurse picks it up.

 “Mr. Potter’s room,” she says. “No he can’t come to the phone right now. He is in the middle of something and can’t be pulled away.

“That was your sister. She wanted an update.”

Eventually the PA calls for help because the amount of scar tissue is so enormous; she is at a loss to explain it all. Pretty close to 1730 a doctor comes in.

“You know what’s going to happen,” he says. “As soon as I get in there, this thing will pop loose because of all the work she did before I got here.”

That’s exactly what happened.

The Doctor went in and with two tugs of gristle the line was free. I was covered in a bit of blood, but the infected Hickman was out. And where I expected to see a lot of blood and a big hole, all there was a small puncture hole the width of coat hanger wire and some translucent red swaths across my chest.

So we’ll what happens next. With the infected Hickman out maybe everything else will fall in line, or at least be a bit easier. Even so, I have to cool my heels in the room for 24 hours to ensure my fever’s gone.

Well, that’s it for now.

More tomorrow,


Friday, October 14, 2011

Shots rang out

Hey Posse:

I’m not really sure how to tell this story, but here goes one attempt. This is true.

Night had just fallen over Christiana Care in Newark Delaware when the nurse entered the room with what looked like an arm full of vials, needles, and test tubes. She knew the patient.  In fact she was one of the original nurses who was there when he started his cancer journey. No, no, no that’s terrible – Let’s start again. BTW in case you never noticed I don’t use names of people in my posts.

The nurse walked into the room with the litheness of a ballerina even though her arms were full of medical supplies. Litheness of a ballerina? What the heck is that? Okay I’ve almost got it. Hang in there.

There’s only one thing more reliable than a good nurse and that is a tide chart. Really? That’s the best I’ve got? Tide chart? People will think about laundry detergent. Okay maybe straight is the way to play this.

Bang!!!! The sound of the shot filled the room. Okay this works.

One of the first nurses I met when I started this cancer journey was _______ and she has been wonderful from day one. Last night she came in with and armful of vials, tubes, syringes, and medications. I was sitting up in my hospital bed getting yet another transfusion of blood.

Even though I had been through it all a million times, she explained what was going to happen, what drugs were which, and what time schedule everything would be administered.

“First I want to flush the lines of your Hickman,” she said.

A Hickman Catheter is a white latex, flexible, thin tube inserted through my chest in my Superior Vena Cava. The tube goes from the Vena Cava out my chest to teeny little splicer, which further divides the tube into three lumens, or ports if you will. It’s very like a garden hose attachment to which you can connect three other hoses.

“Fine with me,” I said.

Earlier in the day they (whoever they is) decided the Hickman had to be removed; it is the cause of my repeated blood infections. Regardless, it was still being used for antibiotics and other stuff pending its removal.

The nurse skillfully sterilized the tip of the first lumen, connected a syringe of saline solution and began to push the plunger down to push solution through the tubing and ensure the Hickman could disperse drugs, blood, and etc. One down – two to go. The nurse sterilized the second lumen, connected the saline syringe, and pushed the plunger.

Bang!!!! The sound of the shot filled the room. The Nurse’s face was white, my bed was wet, and my roommate’s visitor’s were stunned by the report of what could have been a small caliber handgun.

The nurse immediately grasped the seriousness of the situation.

“We blew the Hickman line,” she said grasping and pinching the tattered lumen while rolling it in her fingers to keep blood from escaping. “We need a clamp.”

“Look in the bottom of red gym bag on the windowsill,” I said.

“Pinch this here,” she said placing my fingers on the ragged, ruptured tubing and she leapt to the bag and began rifling through it.

“You don’t have one,” she said.

“Check the side pocket.”

“Got it,” she said.

She took the blue hemostats – a kind of scissors with a needle nose pliers ending – and clamped off the lumen stopping anything from leaking and me from losing blood.

“Wow.” I said. “That was crazy.”

“Yeah, I didn’t push that hard either; it just went. I never had that happen before.

Okay that worked. Just a note – the nurse in question deserves an award for coolness and taking control of the situation with am aplomb far beyond her apparent years.

I guess that’s it for today,


Thursday, October 13, 2011

Good Morning -- waiting for next steps

Good Morning My Posse, Gang, and etc:

I’m not sure what has been harder, spending a day with clothes drenched in sweat or not having my wonderful MacBook. I think it was going without the MacBook. Anyway I’m just chilling here in the beautiful confines of Christiana Care. I have window seat for this flight and get to watch birds land on the black tar roofs below – helluva view. It’s 0614 and the only things I can see at the moment are reflections off the window in my room of the nurse’s station outside the door.

As you all know, I love my nurses.

What’s up with me today? Well my room phone number is 302-733-6446. If you call I may or may not answer, as the chairs are on the other side of the room and I won’t make it to the phone, or a particularly insightful Jerry Springer may be on. Oh I almost forgot to mention, the best way to contact me is probably via email at It’ll probably be a waste of time to use my state email after Friday when I enter the rolls of Long Term Disability and am no longer technically a state employee. One would assume they’d turn that email off; I would.

It turns out my Hickman port thing has a bacterial infection so they may have to pull it out and replace it with a new one. The doctors are thinking great thoughts about that and will tell me something today – maybe; if they haven’t run out of great thoughts. While they may be debating the prose and cons of replacement, I say “yank it!” The Hickman that is.

I meander again. 

My permanent doc is on vacation, so there really hasn’t been much discussion about next steps and the impact, if any, my new heart wrinkle has to play on the next round of chemo. All I know for sure is I won’t be getting any chemo ‘till next week (at the earliest). My platelets are too low at the moment. Thank God for small favors. Yikes!

I have a lot of reading to do today. I got a book-size mailing from the state yesterday about long-term disability. I guess I better read that sooner, rather than later before I go awry of some detail I should’ve known about and everything goes south on me. I also have a library book that I need to be done by Sunday as it s only a seven day loan.

I think I’m also going to spend the day writing some notes and other stuff. I’m working on a project for a close friend of mine and need to start getting down to business – today would be a good day to make some progress on that.

I guess that’s it for now.

Peace to all,


Wednesday, October 12, 2011

Back In stir

Believe it or not I usually write these meanderings on an MS Word document and then cut and paste to the blog. I don't have that luxury this morning because I am using this funky keyboard from the hospital's Get Well Network.

Regardless, I didn't post yesterday because I didn't have anything positive to say and I had to run to some appointments.

Remember I mentioned an echo cardiogram? Well it turns out that didn't go as well as I hoped. Apparently, my ticker isn't pumping blood as forcefully as it should. Here's the deal as far as I can tell. When blood enters your heart, your heart usually pumps about 60 to 70 percent of the blood and waits to to the next heartbeat to get the next 60 to 70 percent of of the blood pumped. Mine ticker has taken a side road and I am doing about 35 to 40 percent.

That plus the low hemoglobin is what has caused the shortness of breath and difficulty walking etc...

What caused it? The doc is mystifies. He said I am the least likely candidate for heart disease.

He doesn't think all the chemo has anything to do with it.
I of course do think it is the chemo.

Anyway, the doc said he thought I had a blockage across an artery that runs across the front of th heart. This blockage somehow kicked itself loose damaging the pumping stuff. Either that or I had an undiagnosed heart attack.

I don't know! I go for a stress test on this stupid heart thing on Tuesday.

But that's NOT why I am back in the hospital. My blood infection is back and I am running a wicked bad fever.

So that's it I guess.

Monday, October 10, 2011

To chemo? I doubt it

Good morning my gang, posse, homeboys, er, ah, um homegirls:

Funny thing, the word homeboys doe not trigger a spell check, but homegirls does. It’s weird.

As you know it usually takes me a paragraph or two to get warmed up this early in the morning. Well today may be a hospital day but, as the British would say, “ I rather doubt it.” I suspect my platelets will be too low, but if I am wrong and I do hit Christiana Care I think I might deviate from my usual roast beef sandwich induction lunch to something different. I’m thinking pizza!

Anyway, I’ve got about a dozen things to do before I go to the hospital. I have to run up to the office and turn in my cell phone, state credit card, ID badge, and final paperwork for my long-term disability. I am supposed to pick up some goodies too. My quandary is, do I run up to the office first thing this morning, or accept risk that I won’t be sent to the hospital today and go after my doctor’s appointment, or do I wait an go tomorrow. Hmmmm – big decisions.

Well, I guess that’s it for now, I’ll see you guys later.