Thursday, June 30, 2011

Feeling Mysteriously Well


Good Morning Chemo 13 –

I’m getting kind of a late start today. I was just getting caught up on a to-do list and realized I lost track of time.

This is the beginning of day three of my chemo and I feel remarkably well. I’m not sure what’s going on, but I’m gonna ask the doc about increasing my exercise load and consider adding yoga. Maybe my body’s adjusting; maybe it’s the meditation helping, or maybe it’s all a temporary mirage. Who knows? I’m gonna enjoy it while it lasts.

I’ve discovered that pizza from Seasons is like a wonder drug as far as arresting my weight loss goes. I’m even developing a little paunch; I’m very proud of it.

I’m still looking at going home Saturday the 2nd. That’d be great. I’m just gonna chillax as they say.

I guess that’s it for now.

Buy the way I have been getting a lot of stupid cards, so get yours in.

MY room #i302-733-6234

Love to all,

Bill

Wednesday, June 29, 2011

Wednesday, June 29, 2011-- why i'm lucky



Hey Gang:

What’s the haps? Weird stuff I’ll tell you. This chemo and hospital life, glad I only have to do this five more times (with a little luck-- a bit less).

Anyway, I had a stark, stark realization late yesterday afternoon of how lucky I am. My roommate – whose name I can’t pronounce and it would be inappropriate to mention anyway – is having a tough go of it. 

At about 4 pm yesterday two doctors in white lab coats floated into the room like disembodied deities to prognosticate over this poor guy. Because of my roommate is from somewhere in Central Africa there is a huge language barrier between him and his doctors, but luckily—at least for ease of translation—his daughter was there.

Like most people, the deities thought communication with this guy could be improved by raising the volume. So at first they kept saying the same thing over and over again a little louder each time until the daughter jumped in and began translating.

I’m sitting less than three feet away with the only thing separating me from their life and death discussion is a teal curtain with a white mesh top between the two beds. I was about to excuse myself and drag my IV stand and assorted chemicals out of the room and into the hallway, when the father says he doesn’t want to know anything and his daughter is empowered to make all his medical decisions for him. Not only that he wants the two doctors and his daughter to find someplace else to talk about it.

The doctors and the daughter leave room and come back in about 25 minutes; the daughter is visibly shaken by the talk. She plops in a chair in front of me trying to catch her breath. I don’t exist to her; she is alone in the world for those few minutes. So I shut up and try to blend into the wall. She can sit there forever if it gives her a little comfort.

It seemed like a long time, but in a bit she lifts her head, smiles at me, and walks over to her father. Because the teal curtain between the beds is about knee high I see the bottom of her legs feet as she balances herself on the side of the single hospital bed and begins to whisper to her dad. I don’t speak whatever it is they are speaking, but one doesn’t need to be a U.N. translator to know she’s having a hard heartbreaking talk.

So how do I make this about me? This poor son-of-a gun has an operation scheduled and I am pretty sure that he is way worse off than I am. So I am thankful that I have light at the end of my tunnel, I have you guys to walk this road with me, and my prognosis is blue skies.

Love to all,

Bill 

Tuesday, June 28, 2011

Tuesday -- short post

Chemo 13

I go get my blood drawn at 10 to see if I am healthy enough to poisoned. Then it's off to the hospital to get probed, felt up, and chemo. Feeling pretty good about this. I hope to be out by Saturday -- numbers permitting. I guess that's it.

Much of what I read suggests that I should look on this as a gift -- I just wish it came with a return receipt. :)

Peace,

Bill

Monday, June 27, 2011

 Monday, June 27, 2011


Oaky gang:

First things first.

These are two cards from the funniest/stupidest card contest. Let’s get those entries going. Some of you are being neither funny nor stupid J.

Today is day 20 so that means just one thing – I go back to the hospital tomorrow for four or five days. I hope to be home by Saturday.  The plan is pretty much the same.

I feel pretty good except for this headache around the Omaya Reservoir in my head.  It is still very sensitive to touch. I’ll need to bring that up to the docs.  The thing about oncology docs is that they are so specialized that if you ask them to take a splinter out, they’d have to refer to a manual (is that too sarcastic?).

I wonder if chemo is cumulative or does each session stand-alone? What I mean is I handled these chemo chemicals well the last time I had them (block 1), will this infusion be like the first or will the effects multiplied? I’m very curious.

Good news! My weight has stabilized and I’ve actually gained a pound or two. That’s a big deal because I was dropping weight hand over fist. I am now at a scrappy 228 – down from well, er, ah …  never mind.

I guess that’s it.

Love to all.

BIll



Sunday, June 26, 2011

Apologies and Visualization


 Good morning everyone.

 Last night my sister said that she uses my blogs as a barometer of how I am feeling. If I post then she assumes I am okay and of not, it must be a tough day.

That's probably pretty accurate, yet I think an apology is in order. It  is my goal to write to you every day -- whether I feel well or not. That's the point of this whole thing, to take you with me on this journey. To be as honest and truthful about this as I can be. The days I feel like poop and how I cope (or don't) are just as important (probably more) than when I feel well.

So oops!

My nephew's logos are to the left. I'm going to have some tee-shirts made soon with these logos. They'll be pretty cool.


Things I didn't tell you this week.  I told you guys about the transfusions of platelets and red blood, right? I thought so.

I started a meditating ritual of sorts. There is a great body of work suggesting that what conceive in our mind we behold  in our reality and more importantly for me, we can behold in our physiology.

I'm not the smart guy, but apparently it goes kind of like this. If you use imagery to talk to you body via your brain (hold the jokes please), these images can become commands to your body and can assist in the  healing, relaxation, etc.

For example I sometimes picture myself canoeing at Hyalite Reservoir outside Bozeman, Mt. and the act of paddling pushes my further from illness and closer to cancer free. The theory is this imagery will ultimately result in physiological change facilitating recovery. I guess we'll see, but in the interim it sure provides me about an hour of peace on bad days. I usually listen to selections of softer music from  a Wyndham Hills sampler.

I feel okay today. It is day 19 of 21 for this cycle and I have whopping sore at the roof of my mouth driving me to distraction (chemo side effect), but my arms and legs feel stronger.

Friday, June 24, 2011

ozymandias and chemo -

Friday, June 24, 2011


Good morning Chemo-13. (For those of you not caught up, that’s the name of our gang) and by reading this you are member of the gang.

I didn’t get to write yesterday because I was held captive at Perkins, by what is apparently the only place in town for people over 60 to eat breakfast. The place was so packed I thought I missed a state or federal holiday somehow. It was weird.

Once I made it through the line out the door (yeah, I stayed) and got to my seat I started reflecting on all this cancer stuff. And though I am not getting or being negative, this kind of situation makes you consider your mortality and the life you’ve led. Then I started thinking about Percy Shelly’s poem Ozymandias.

I met a traveller from an antique land
Who said: "Two vast and trunkless legs of stone
Stand in the desert. Near them on the sand,
Half sunk, a shattered visage lies, whose frown
And wrinkled lip and sneer of cold command
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them and the heart that fed.
And on the pedestal these words appear:
`My name is Ozymandias, King of Kings:
Look on my works, ye mighty, and despair!'
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare,
The lone and level sands stretch far away".

Sitting in Perkins surrounded by Septuagenarians and me fighting for life against cancer and staring into my bottomless cup of black coffee, I became aware at visceral level why it is important to help others and why it is important to be grateful. As ephemeral as life is, possessions seem to me to, are equally fleeting and it is our contribution not our things that outlast us.


Friday, June 24, 2011

Little lighter fare.


Now that you’re totally depressed let’s lighten it up a little. My nephew sent us some Chemo –13 logos. I’m thinking of getting some tee-shirts or something made. Which one do you like let me know at Lettice123@yahoo.com

 



I never did tell you how I am feeling after the transfusions. I feel okay. Still have some stamina issues, but I guess I’ll have them ‘till we beat this thing.  

Love to all

Wednesday, June 22, 2011

transfusions


Good morning campers. I’ve decided you are my peeps; my homeys; mi hermanos, y hermanas, but most of all you are my queridas, and queridos. My gang as it were. Like George Costanza had the Van Buren Boys, we are the Chemo – 13. We really need a logo. The name signifies how unlucky the cancer is because of me going through the chemo and you guys getting me psychically ready.
In honor of that I am listening to Shaggy’s rendition of Angel. To read the lyrics go to http://www.elyrics.net/read/s/shaggy-lyrics/angel-lyrics.html. Juice Newton is somewhere having chest pains.
I had the weirdest few days. Since about the 12th I’ve been a side effect magnet. You name it I’ve had it—shortness of breath, fatigue, drenching sweats, soar throat, headache, nosebleeds, etc. It was grinding and playing with my mind.
It came to a head Sunday when I was getting ready to take a bath. I was standing naked at the mirror gazing at the wonder of me and I notice that on my left shoulder and running up my neck are blotches of little pink spots. Somewhere I remember reading something about that so I beat feet out of the bathroom and pick up my “Chemotherapy and You” book (that publication actually exists).
There I am standing naked and hairless in the kitchen waving the chemo book yelling to Kate. “HONEY, Look!”
She says with perfect comedic timing, Yeah I’ve seen that before.”
We laugh for a second.
“NO I think I have a real serious side effect and we need to call the on call oncologist.”
I show her the spots. We call the oncology office and in minutes the doc calls back.
“Oh yeah,” he say. “Those are blah, blah, blah spots (I don’t know what the hell he called them) you’re probably going to need a platelet transfusion. Get to the office first thing Monday and we’ll do a CBC (Complete Blood Count) and see what we have.”
At this, all that cosmic reading I’ve been doing kind of kicks in. I’m not upset, not even angry, not even scared – I think I am amused.
“Alright,” I said. “See you tomorrow.”
I show up at the oncology office and because I have a Hickman device I get my blood draw in the chemo-bay. This chemo is row upon row of institutional reclining chairs with wonderfully nice people fighting for their lives with smiles on their faces and truly kindness in their hearts. Really nice folks
Regardless, they draw my blood and tell me to cool my heels out in the waiting room while they run the numbers.
One of the nurses comes out and says, “You need a platelet transfusion and look at these white blood cell numbers you should probably have a blood transfusion. What do you think?”
“I don’t think anything, I don’t anything. What’s normal and what am I?"
She says that 120 is normal for white blood cells and my count is four. She gives equally depressing news about red blood cells etc….
“Well given that info, I guess a transfusion is the right thing to do.
Sometimes I think they offer patients choices that aren’t really choices just so we’ll feel engaged.
So it turns out that my lack of energy, fatigue, and overall blahness is due to blood work. To me that’s good news. That can be fixed and I can get on track way faster and start developing a little more strenuous physical fitness program than sitting in a recliner and cheering on Jeopardy contestants.
So Monday afternoon I at the hospital in mini-chemo bay, which deals specifically with blood and blood products. They hook me up to the platelets, let them, drip and I chill out for abut an hour and nap.
Tuesday I go back – IPod in hand – and have the most relaxing 2 ½ hours I’ve had in a while. I’m listening to Lyle Lovett’s Church Song; Arlo Guthrie’s City of New Orleans; Roberta Flack’s Killing me softly, and on and on. All the while the blood drips into my veins.
And while I don’t feel great, it does make me feel better. I can easily walk across the hospital campus now to get my car without getting too taxed.
To celebrate I get a nasty cheese-steak and a Coke and go home to wallow in grease, Ketchup, and caffeine.

Love to all


Sunday, June 19, 2011

disturbing photos




This is kind of a creepy picture. I look like an axe murderer.
I was trying to send a signal to my gang, the Chemo -13
Anyway, cancer didn't do this to me, Kate did. My head was
beginning to look like the parking lot of an abandoned TGIF.
I had areas of baldness with sprouts of hair. Kate shaved it
for me. Actually it came out pretty good.



This too is creepy, but in a different way.



This is me before dawn in my lucky chemo shirt, my brother
Fred gave me. This I.V. drug I'm getting in this photo
 went in for more than36 hours. But, that's cool! What
doesn't kill me, makes me stronger


Mind Body Connection


Mind Body Connection
I started reading one of those mind/body health connection books yesterday, Peace, Love and Healing by Bernie Siegel.  It was given to me by a dear fried Jaqui.
While I completely subscribe to the idea that body and mind work together to promote healing and sickness, the actual reading of the text has given me some insight. People often give key advice at specific times if we just listen. Several of you offered encouragement last week when I was feeling – at least – blue.
One of you said Lighten the F@#K up. That is mostly good advice – no matter how crappy I feel from time-to-time as we (I do include you guys in this by the way) go through this, a good positive attitude can only help. So what, right? Bill’s going to embrace cancer with a marshmallows and butterflies attitude?
Hardly!
What I am gong to do is fall back on what has helped me all my life. I’m going to set some goals and work to achieve them. If you’ve never been to a goal workshop there’s a couple of things that you need to do. Language matters so to convince the cosmos and ourselves we need to state things specifically, positively, and in the present tense.
For example one of my goals is to get physically strong again when this Cancer stuff is over so my goal would be, “I bench press 275 pounds on 1 January 2012.” My point is that setting these goals not only sets them mind/body stuff in motion, but also sets the cosmos in motion.
I believe it is true that what a person conceives in their mind they can hold in their reality.

So today I am sharing my first draft of my short term and intermediate goals with you guys.

Bills Goal list
I am cancer free on 1 Oct 2011
I run a 10 K race in 56 minutes or better on March 2012
I meditate everyday on Jun 20, 2011
I have written my cancer play on 1 Sep 2011
I return to work on 1 Oct 2011
I only speak to people about cancer when I have something affirming to say on 20 Jun 2011
I make positive affirmation posters and hang them up in my house and hospital room on 20 June 2011
I walk everyday 20 June 2011
I stay especially positive on days 8 through 14 of any chemo block. 

Saturday, June 18, 2011

Contest Results


Bill’s Cancer Announcements

It has come to my attention that we are not having as much fun with my cancer as we could. It is time to fix that.

New Business – Monday we will begin a new contest. – The funniest/stupidest get well card. Go find the funniest/stupidest get well cards you can and send them to me. You can send them to 396 Stafford Ave, Newark DE, 19711 or via email to Lettice123@yahoo.com. The deadline for entrants is July 1, 2011. The winner of the contest will get to take me to lunch at a restaurant of my choosing. Oh okay, I’ll take the winner to lunch. Cry babies!

Old business – There are two winner of the doo rag contest chosen from the plethora of entries. The first winner is Barb Riley DVR for her Hawaiian themed doo rag. I will be going the fabric store later today.

The first runner up is Gary Stockbridge (This has nothing to do with him being the DWIB chair. I swear to goodness; I can’t swear to God, because I might go to hell). If for any reason Dr. Riley is unable to fulfill her obligations, Mr. Stockbridge will be declared Mr. Doo Rag. Though he did not design a doo rag he actually bought me two – an Army one and a Harley Davidson one. I am quite the man about town.




Saturday, June 18, 2011-- Lunch with the ladies

Saturday, June 18, 2011

The champagne colored Honda minivan rolled slowly up Stafford Avenue. Its occupants scanning right and left waiting for just the right time to stop and snatch Bill Potter off the street.
Bill didn’t see the van creep towards him as it passed the giant pine tree marking the beginning of his property. Dressed in a bright red Hawaiian shirt and khaki Dockers, he walked slowly down his driveway to his mailbox.
“There he is,” one of them shouted. “Get out and open the side door. It has child safe locks and he’ll never be able to get in.”
Sher Valenzuela, a thin athletic blonde woman, hopped out of the van and gave Bill a hug.
“Bill, you look great,” she said.
“It is so great to see you,” said Gwen Jones, the driver who owns smile a thousand meters wide. “You look so cute in your shirt and Army doo rag.
“You don’t look sick at all,” Sher said.
“Thanks guys!”
The three friends had been planning for some time to go to lunch together. Ever since Bill was diagnosed with cancer about two months earlier, dates kept sliding because of chemo appointments or work schedules.
But today, they finally were going to lunch; Bill picked an Irish place, Catherine Rooneys on Newark’s Main Street.
“What is it the Irish like, that pie or something,” Gwen asked.
“Oh Lassie,” said Bill in his best Irish brogue. “Tis the shepherds pie you’ll be wanting. Tis a feast for sure, but since tis Friday you may be wanting the fish and chips too.”
The dining room was paneled in darkly rich hues of different woods. Small tables creating an almost conspiratorial atmosphere were spread throughout the room with just enough distance between them for privacy.
“Bill this is beautiful,” Sher said. “I remember when this was something else; this came out great.”
Gwen, Sher, and Bill were ushered to a corner table where the two ladies ordered quiche and salad (Bill questioned the Irish authenticity of the choice) and he had the fish and chips.
“Take the doo rag off,” Gwen said. “I want to see how you look.”
Bill was wearing a white Army Strong doo rag emblazoned with U.S. Army recruiting logos. He recently started wearing it because much of his hair fell out from chemotherapy.
He took it off.
The front his scalp to the middle of his was bright white creating an easy to follow map of where his hair had been. The rest of his head were patches of hair fighting for a toehold like the front lawn of house full of kids.
“That’s not bad,” Sher said.
Gwen said Bill only looked like he lost some weight.
“You really do look good.”
They chatted back and forth about different things and about different challenges they each had overcome throughout the years.
Though the conversation never died, lunch finally had to end with Sher walking up Main Street to Panera to meet her husband Eli and Gwen going back to work in Wilmington.
Bill for his part had to go back to the Helen F. Graham to drop off some, er, ah bodily fluids for analysis.





Friday, June 17, 2011

NO sleep

Guys:

I usually write the blog in the morning, but last night I woke up at 0300 and couldn't get back to sleep. I got  up and went to the living room and read Confessions of An Economic Hit Man. I ended up dozing off in the chair at about 0530 and didn't get out of the chair until a little after 0800. Then I had to rush to get a blood draw and then went out to lunch with two friends. The point is I'll post a good one tomorrow.

Peace,

Bill

Thursday, June 16, 2011

Gurgle, gurgle, gurgle, gurgle, gurgle, gurgle


Gurgle, gurgle, gurgle, gurgle, gurgle, gurgle.

I have a new friend; a non-stop constant gurgling in my stomach that is enough to drive a person crazy.

If you ask a doctor or nurse which makes you feel lousier, the block one of the chemo, or block two (the one I finished Sunday) you will get a long song and dance about how everyone is different and it all depends, and blah, blah, blah. Let me be unequivocal – for me block two is a gazillion time worse. Just need to get tougher.

Remember that posting last month when I was sucking my thumb? Today, those are the good old days.

Jeepers creepers!

Yesterday I walked up a flight of stairs and was winded – I can’t insert expletive believe it. My buddies at the Delaware Department of Labor would be glad to testify that in the winter you could find me going up and down the stairs -- from the fourth floor to the first and back up again during lunch -- and doing pushups at the landings. Winded walking up a flight of stairs – insert expletive. It is going to take so much work to get that all back again when I get over this – insert expletive.

Yesterday I also washed the kitchens floor. I was exhausted when I was done. Exhausted from washing a floor? Admittedly it was pretty dirty. I don’t know maybe I am being too hard on myself or maybe I’m just being a girly-man. I don’t know.

I need to be careful. I have been moping. It can take me a lot of time to get going to do anything. I haven’t been as active as I should be like walking and so on. I really need to institute some GOYA. For those of you unfamiliar with the acronym it means Get Off Your Ass.

I have not been pulling my – somewhat diminished I admit – weight lately when it comes to calling people back or writing notes to friends. I need to get on that. These are good people who’ve gone out of their way to offer help and support.

I guess that’s it for now.

Love to all

Bill

Wednesday, June 15, 2011

It was a weird day yesterday



It was a weird day yesterday. I got to the doctor’s office for my 9 a.m. appointment expecting to get some chemo in that Omaya reservoir in my head. That’s only a 20-minute deal. I guess I had my days mixed up because he says, “No, no, no your are getting that and the Rituxin. Did you bring the Demerol?”

I hadn’t.  I had to drive back to the house get the Demerol and then go back to the Cancer Center. This was about 10:30 or so. At the house I made a couple sandwiches because the Rituxin can take hours to administer.

While I was gone it seemed like there had been mass influx of patients. They were everywhere. Nurses running around with clear I.V. bags and miles of clear plastic IV line trailing behind in their wake like big game fishing line.

By the time they got back to me it was 11’ish. The doctor said this would be a quicker infusion, but wanted to make sure I had a ride home because he didn’t want me driving pumped up full of drugs. I called a friend of mine and she agreed to get me at about 1500.

I of course violated one of Bill’s Axiom #4 of Leaderhsip—No Plan survives its first contact with reality. The Rituxin infusion would eventually last even longer than usual, I didn’t get done until about 4:30. Jeepers!

Oh well. I was comfortable and the people were nice. Kind of my own fault for not paying closer attention

That’s it for now!!

Love to all

Bill

Sunday, June 12, 2011

Sunday, June 12, 2011 – Going Home



Hey guys. I don’t have anything snappy to say this morning. Kind of tired. It looks like I’m headed to the house today. My methatextrate levels looked good last night (the standard was .5 or below; I hit .2) so that’s good.

I’m kind of beat though and have a headache. I guess that’s what happens when you spend the last four days getting poisoned and then antidoted.

That’s about it for today.

Love to all,

Bill

Saturday, June 11, 2011

Saturday, June 11, 2011

Saturday, June 11, 2011

Sitting here having about the best cup of coffee I can remember. Man it is good. I’m not sure where the nurse stole it from, but it is good.
According to my calculations this is day four of block two. I’m feeling pretty good today. They’ve been pumping full of chemo and now they are backing it off with some other drugs, so I don’t get neuropathy, a multi-pain in the neck nerve damage (If I’ve got that right). It’s all quite a delicate dance with timing et al.
The plan as I understand is to give me some more chemo today and monitor my blood levels to ensure I am safe. I hope it’s not like Marathon Man safe though (an obscure joke – I know). If all goes well, I might be headed to Casa del Potter Sunday afternoon for a hug-fest with my puppies. That’d be great.
With everything going on the past few days, I kind of let my scheduling slip. I almost forgot to refill one of my injection prescriptions, but caught it in the nick time. Yikes! That could’ve been like getting shot in the buttocks (obscure Forest Gump reference and chemotherapy joke).
Had an interesting talk with a psychologist from the Cancer Center yesterday afternoon. Those guys always give you a lot to ponder. Hmm – need to mull some of that stuff over, but the gist of it for me was, that no matter how hard I might try to get back to normal after all this is done – even if everything goes according to the big cancer plan – “normal” has changed forever.
There is something to that – I’m not sure what that is yet. But, it seems like a pretty big deal I need to wrap myself in holistically – I think I’m talking more than the mind, body, and spirit cliché – but there probably should be some of that.
Once again that whole Joseph Conrad idea of new beginnings from an earlier post is kind of what I think I’m talking about. You know, … I saw the straight line of the flat shore joined to the stable sea, edge to edge, with a perfect and unmarked closeness, in one leveled floor half brown, half blue under the enormous dome of the sky.”
A lot to ponder

Love to all,

Bill




Friday, June 10, 2011

10 June 2011 Never go to hospitals to rest. It’s just not what they’re there for.


It was a long night.

The chemotherapy medications I am taking have to be arrayed in a certain order and spaced in precise time increments from each other. This, of course necessitates a mission first, sleep later attitude.

So last night at about 11 pm I finished the big block of chemo -- methotextrate, which is the big Kahuna cell killer of this second go round. At about 1145 or so, the supporting cast of new cell killing and cell repairing drugs, which I either can’t or won’t list, were lined up and we began pumping them into me. Some had to go in immediately, some at midnight, some at 2 a.m. And on it goes. In fact it will go on like this for the next couple of days. I’m hoping to escape Tuesday

So I didn’t get much sleep last night and probably won’t tonight either.

Other than a little tiredness and an omnipresent upset stomach, I feel okay. Research I’ve done suggests that there is a 50/50 split of opinion about whether block one is easier than block two. Block two is potentially more dangerous than one due to sever side effects of methotextrate, but driving on I 95 is probably still more dangerous.

My biggest irritant of the night was that my Hershey bar melted and re-hardened leaving it all yucky and crumbly. If that weren’t bad enough, I didn’t have any $1 bills for the vending machine. I eventually was able to salvage a snack pack of Lorna Doone butter cookies out of the bottom of my shaving kit. I guess the appetite’s okay huh?

If there is any upside to this is I weigh 225 and can’t seem to gain an ounce. I’ve actually dropped about 30 pounds since April.

I was telling my friend Sher that in April I bought one of those Wii fitness programs and plugged in my goal for the summer (25 pounds). Last week I hopped on the Wii to weigh myself and the TV screen showered my avatar with flowers and cheers for being so dedicated and reaching my goal weight early. So there is that. In full disclosure I must add according Wii my max weight at 6’1” is like 180, so I am down from obese to overweight. I haven’t that little since basic training and I had pneumonia then.

I guess that’s it for now.

Peace,

Bill

Thursday, June 9, 2011

A little about yesterday


Day 2 block 2

This’ll be kind of a long post. I was going to write this kind of tongue-in-cheek, but you can’t go to the same joke too many times. Although this situation kind of begs for it … ah hell … I can’t resist.

Serial Disruptor Cools Heals in New Ward
Newark, Del. – Saying it’s just a coincidence, the Christiana Hospital announced yesterday that serial disruptor Bill Potter had been admitted for chemotherapy and put in the Bone Marrow Unit where access to his shenanigans is limited.
“We all love Bill Potter here,” said senior housing director Vinny Boombotz. “We didn’t have a bed for a male in the usual cancer ward, so we sent him one ward over to 6C.”
Potter began his second round of chemotherapy last night and is pretty pleased with the set up.
“Kind of freaked me out at first,” he said. “When you hear, Bone Marrow Unit your first thought is, ‘what the hell happened, am I sicker than I thought?’ After they explained it all to me it’s a good deal. I’ve got a private room, with a window where I can see the sunrise, I’ve got great nurses, and I love hospital food!
 “It’s like being in 6B, only way quieter. I like the quiet – I always have. I don’t like a lot of noise; it’s way too distracting and unsettling. It’s just a bed down the hall from before – that’s all.”
Even though he is being housed in the Bone Marrow Unit, he can still have visitors and generally be the nuisance people seem to love.
Potter will be at Christiana Hospital receiving chemo for about five days.
Visiting hours are from 11 a.m. to 8:30 p.m. and Potter’s room number is 302-733-6127.


A little about yesterday.

I arrived at Christiana Hospital at about 7:20 or so. I went up to what had been my cancer ward and met Liz, one of the higher ranking nurses.
“What are you doing here,” she said.
“I’m here for chemo”
“I don’t have you on my list.”
“That’s not good,” I said.
Liz reached for the phone, dialed it, and cradled it in her neck and began furiously typing, hoping – I guess – to pull up some Potter data.
“Do you have a patient name Potter,” she asked. “Oh, okay. Then he’s coming back here? Thanks. I guess you’re going to have a Hickman put in and then come back up here.”
“I just wanted to drop off my overnight bag before I went downstairs to the surgical unit.
Liz took the bag.
Getting to the Surgical Unit through the hospital was like walking through the business end of a large hotel or supermarket; all the glitz is gone.  Drab hallways are decorated with photos of employees who received one type of an award or another and the floors just don’t have same glassy sheen as the ones in the main lobby.
Still it was well marked and even I could find my way. 
The Surgical Prep Unit is a beehive. There are hallways of individual rooms, or more accurately cells, kind of like one would expect at a modern monastery. Nurses are taking vitals signs, clothes are being bagged for movement to the recovery room, patients are getting wedding rings taped, and others patients are moving to the ER holding area.
If the prep unit is like a beehive, than surgical hold is like an air traffic control tower.
Patients roll in on beds from hospital rooms or walk in – like I did – from the prep unit.  Regardless, each patient ends up on a bed stationed in a little bay with an alphanumeric code like an airplane gate. High on the walls of the holding are huge flat screen TVs continuously updating the arrival and departure of patients, and the status of the many operating rooms. Who’s finished? Which doctor is on, ahead, or behind schedule? Which patient is ready? Which is not?
As the control tower monitors schedules and patients, nurses check and make sure the right patient is in the right spot, going to the right destination. Doctors come and go double and triple checking patient info to make sure everything is right.
“What are you here for?” One doctor asked me.
“I am having a Hickman installed,” I said.
“What are you here for?” Another doctor asked me.
“I am having a Hickman installed,” I said.
“What are you here for?” a nurse asked me.
“I am having a Hickman installed,” I said.
And on it went.
At some point, an anesthetist came in, checked my IV hook ups, and gave me a shot. It was actually very relaxing whatever it was – I wish they gave it at airports it would make waiting for flights way mellower.
Sometime later they roll me into an operating room.
It’s not like TV. The OR is very austere -- just the necessary equipment needed for procedure seemed to be on hand. Doctor’s and nurses introduced themselves, explained what was going on, and who was going to do what throughout.
The next thing I know I wake up in recovery area, very similar to holding bay I had been in earlier.
You’ve already the faux news story above so you know about the room change.
When I get to the room my old hardware (a multiple port IV line a.k.a. PICC) is removed and the chemo begins almost immediately.
First though I get the Benadryl and Demerol cocktail to prep me for the Rituxan, which appears to be step one in any chemo treatment for me.

I guess that’s it for now. I wanted to get something out before it got too late.



Wednesday, June 8, 2011

A quick note




This’ll be quick post today. Heading out in about an hour and a half to get my Hickman in and start block II. It’s gonna be a blast. I love this stuff – going eyeball to eyeball with cancer. Getting a chance to kick something’s ass is something an old infantryman looks forward to.

There is an old saying that seems appropiate at the moment, “Arguing with an infantryman is like wrestling with a pig; everyone gets dirty, but the pig loves it.

I’ll post more tomorrow.

Peace, Bill

Tuesday, June 7, 2011

Here we go again.


Here we go again.

Good morning everyone. Well, here I am; it’s day 21 of 21 of my first chemotherapy block. So hurray. This is actually a big deal.

I made it through pretty well with only really bad day in block one. And that was more of a psychological thumb-sucking event, than a vomiting/pain thing. I’ m pretty sure I mentioned it.

So tomorrow is Day 1 of block II. I begin my Sisyphus imitation at about 7:30 when I go to Christiana Hospital for a quick surgical procedure to install a Hickman Catheter. A Hickman is a “quick release” hookup, which is inserted in your chest, to your superior vena cava. This allows docs and nurses to more easily dispense chemo and draw blood.  There is a pretty good discussion of it all at http://en.wikipedia.org/wiki/Hickman_line.

It kind of creeps me out – truth be told.  The idea of hanging chemo hardware off my body implies – wrongly I admit – a permanence of status that makes me uncomfortable. Intellectually I understand the paradox of installing a permanent device to facilitate the cure of a temporary disease. Still – it creeps me out.

The surgery will last about 45 minutes.

It won’t be long until I get to test-drive the Hickman. I continue rolling the boulder up the hill in ward 6B where I link up with my doc and we begin the chemo that day.

This is a little different than the first go around – I think I mentioned that. The chemo drugs will come pretty much continuously over a four or five day period. It is the continuous aggressive nature of the chemo schedule that makes this an inpatient event.

Anyway, I should be there for four or five days distracting doctors and nurses and generally raising a ruckus. Once I get my bearings I’ll post my room phone number.


Love,

Bill


Monday, June 6, 2011

Petri Dish Blues


For all you musicians out there, this is a simple I, IV, V blues song. Throw some VII's in as you want.  I'm still playing with some minor chord riffs to make it cry.  


Petri Dish Blues
By Bill Potter

G
Six weeks ago I felt pretty good
C
Now I sit a wondering if maybe I should
D
Spend the night in my room and cry all alone
G                                                            C            G
And pray for last month when nothing was known


Chorus
G
It all changes on spin and you can never tell
C
If tomorrow will be heaven or a trip to hell
D
But, my baby is with me and she’s by my side
G                                                C            G
My love for her well I just can’t hide



Living in Petri dish sure ain’t fun

It seems I have give some blood to everyone

They slice it and dice and let you know

How many rounds of chemo you have left to go.


Chorus


I didn’t start this fight, but I’m gonna win

I know what kind of shape that my spirit is in

Cancer is tough, but baby so am I

So don’t you worry too much and surely don’t cry


Sunday, June 5, 2011

Front Row From L: My Sister-in Law Pat, Me, Kate.
Second Row From L: My Brother Fred, My Sister May Lou,
my brother in-law Buddy

This is a photo from our get together Saturday


Miserable took a day off


Miserable took a day off yesterday for what may be one of the best days I’ve had in a very long time.
As I mentioned in an earlier post, my brother Fred and his wife Pat flew in from Boston to visit Kate and I. Not only that, my sister Mary Lou and her husband Buddy drove up from South Carolina.
At about 8:30 a.m. my phone rang.
“Bill this is you sister,” Mary Lou said. “I’m coming over for coffee.”
At about the same time my cell phone rang.
“Let’s get some breakfast,” he said.
And with those two calls the day was off to the races.
My family is a whirlwind. They don’t trudge, they don’t ponder – They do!
We decided to have breakfast with an international flavor and er, ah, went to IHOP. It is THE International House Of Pancakes after all.
It is fair to say that my brother and sister have the same volume setting as I do – boisterous shall we call it. Anyway the place was packed and we were seated at one of those extra long booths, that aren’t quite long enough for six Irish behinds to occupy at the same time. It was comfy.
We did the usual shouting and lying to each other – talking about people who weren’t there to defend themselves; we retold stories we all knew the endings to. It was a little slice of timeout heaven.
Eventually came the “I’ll handle the check” pronouncements. Those of you, who know me, know I’ve always been very clear and upfront – If you want the check you can take it.
My wife however is of a different stripe. On her way in the restaurant she surreptitiously had prepaid the check. She’s a good girl. I would’ve freeloaded.
Oh I almost forgot – Fred had bought us all Bosox hats so we could all be on the same team fighting cancer. It was as cool as can be. I just can’t say how delighted it made me.
After breakfast Kate, went to Pathmark; Mary Lou and Buddy went, well who knows; and Fred, Pat and I went to Herman’s Butcher Shop where Fred bought six of the most beautiful inch-thick Porterhouse Steaks you’ve ever seen. Man, oh man.
The day before I had started to put together on of those little black barrel grills together. You know the kind you get at K-mart for 100 bucks and it looks like a 50-gallon drum cut in half. Anyway I ran out of energy putting it together, so Fred and Bud finished it.
At about noon everybody cajoled me into taking a nap. Truth be told, I needed it.
When I get up at about 1:30 I’m famished. I’ve been very careful about what I eat lately, but there was a bowl of Cheetos calling out to me and I dug in. They were delicious. They’ll probably show up on a blood test next week.
Mary Lou, Kate, and Pat were hanging out for a while in the kitchen. Kate was making her potato salad. 
Buddy was kind enough to review the safety instructions from the grill to ensure our safety. Some of the tips included:
1.     Grill is hot
2.     Do not use in house
3.     Don’t play with grill
At about 4 p.m. the steaks were done and they were even better than they looked. I had a couple of glasses of wine and we all just talked for a couple of hours.
Somewhere around 5 p.m. we prayed. It was different. I don’t think as adults we ever prayed together outside of church. It was important.
And with that the day was over. It was beautiful.

I'll post some photos later

Friday, June 3, 2011


Dear Friends:

It is with great humility that I inform you that all the bald men in America just got one person uglier. I was told it would happen and it finally did. This morning I discovered that my hair is falling out from chemotherapy. The resulting baldness and my already debonair exterior has of course catapulted me up the bald guy “sexiest man alive” food chain.
There is a problem though. People Magazine will not consider me its sexiest bald guy as I missed the deadline by a hair’s breath.
“We are concerned that Mr. Potter began chemo just to lose his hair,” People said. “Sure he was okay looking before, but he wasn’t no George Clooney -- you feel me? Now that he’s bald doesn’t meet he gets to jump to a less follicle rigorous category.
“Had he lost his hair, say 12 months ago, it would be different story. This guy just has me scratching me head.”
At first I was kind of devastated when I rubbed my hand across my head and it came back covered is hair. Yech! The implicit symbolism is of course obvious, but after I sniveled and whined I decided to do something fun.

Ladies and Gentlemen:
It is my pleasure to announce the first (and hopefully last) Design a Devastating Doo-rag for Bill contest. So sit down and design a cool Doo-Rag and I will wear your creation to chemo and everywhere I go. Indulge yourself at my expense. I promise to wear your creation.

Please have entries to me by June 10th at Lettice123@yahoo.com. Be creative.

Two things to note

1. This is not a doo-rag                                                   Neither is this.
                                               




 Love,

Bill












http://www.wikihow.com/Tie-a-Doo-Rag



A little poem


The noise

It’s like a big night in Reno
Ding, ding, ding, ding, beep, beep, beep, beep
Lights flash
The regular’s wait and hope
Attendants walk the floor
Ding, ding, ding, ding, beep, beep, beep, beep
There’s no sound of change
No clink, clink, clink, clink for the winners
No little white buckets to feed the next machine
Only bags of iquid
Ding, ding, ding, ding, beep, beep, beep, beep
Lights flash
Players wait for the big jackpot
It could be months away or never;
Each dream tied to machines by clear tubing
Ding, ding, ding, ding, beep, beep, beep, beep
It’s like a big night in Reno

By Bill Potter

I’m Alright


I’m Alright

I have received a couple of notes from you guys about my sad post a couple of days ago. Sometimes it sucks I guess. I am back at it today and feeling good. After I wrote that last post, I took a drastic turn to the internal. I covered up, stopped answering the phone, and just existed alone for a few hours. It wasn’t cathartic or enlightening; it was just quiet with no questions, worries, or concerns. It was all in the now.

Admittedly I can’t do that too often, but hunkering down saved me the other day. I just couldn’t be a cancer patient for one more minute. I’m better now though.

My big brother is coming from Boston tomorrow to fatten me up. While doctors are pumping me full of drugs and chemicals, he is going to pump me full of beef. It should be an orgy of cholesterol and potato salad and I can’t wait. I even bought a nice expensive bottle of Pinot Noir.

The plan is to sit in the backyard cook some chow and spend the day lying to each other. It’s gonna be a blast. 

Thursday, June 2, 2011

Feeling a bit better


Feeling a bit better and more optimistic today. I have a lot to do. Got a good five hours of sleep last night. That’s progress I guess.
I have to call Tri-Care this morning and make sure that my health insurance carrier is engaged and leaning forward. I’m going to take a squeaky wheel gets the grease approach and make sure I stay top of both Tri-Care and my doctor’s office to ensure there is a an excellent meshing of gears. Can’t have the left hand not know what the right hand is doing.

The problem I think is I have two things occurring at once. First the original bowel resection which started this thing is not completely healed and the chemo attacks on good cells just piles on the sense of not being quite healed.

Wednesday, June 1, 2011

MotherF@$KER


I’m so tired. Blood draws; interrupted sleep schedules; constant upset stomach from chemotherapy. It’s all so much. I don’t want to be positive today. I want to crawl into my bed and cry until somebody makes it all go away.
I went to the oncologist today and before the doctor sees you they draw blood in the chemotherapy bay.
I can’t think of any place louder. There is a constant whir of IV pumps pushing chemo through arms, legs, abdomens, and just about every other body part. The constant whir is only interrupted by a chorus of beeps and chirps of machines warning of air bubbles, bags run dry, or some other problem causes a mechanical warning.
Beep, ting, boop, tang and on, and on, to a dissonant unsettling cacophony that reminds you that several weeks ago this world didn’t exist. The sound seems to belong in some yet unproduced horror film, where machines take control of our internal organs and hold us hostage.
It was too much today.
I looked and saw the sick and realized I am one of them. I’m 30 pounds lighter than April 1st. It scares the shit out of me!
I hadn’t slept much last night. Maybe that’s why the impact of it all was so hard. I guess what really makes this hard is that this is only day 15 of this chemo with only about 147 days left to go for the total course of treatment.
Jesus, Mary, and Joseph help me.

I’ll feel better tomorrow,

Love,

Bill