New Swear Word

I’ve discovered it’s hard to use the space bar of you computer when your thumb is in your mouth, thus making typing difficult. I’m still in lockdown, waiting for my chance to spring into action, grab my dirty clothes and make my way to the door.

I was in error this morning. Apparently there is more afoot than just the neutrophil – Scag blag it. Kate and I have developed this new swear word by the way. Feel free to use it. But you’ve got to say it fast. Try it, “Scag blag it.” Pretty good huh!

What I didn’t know is the infectious disease guys are still roaming around trying to find the root cause of my blood infection so they can treat better me when I leave. Treat me when I leave? What the hell is that? Scag blag it! Geez Louise, I could be here forever; sometimes these things never get figured out. Scag blag it!

If this has to do with some social responsibility I have to my fellow man to not spread disease, I ain’t buying it. If it’s about me, and protecting me, and making sure me and mine are okay, then maybe I’ll be a little patient. I guess I’ll never be a “little patient” ha, ha! Oh that’s rich.

I digress. It looks like I might get to go home Saturday, but I am skeptical. If they didn’t find the root cause of this today, what makes me think they’ll find it on Saturday after they go to wherever it is they go, to do whatever it is they do, when they’re not letting me go home. Scag blag it!

I guess that’s it for now.

Peace,

Bill

The Joe Pesci in all of us

With any luck I’m breaking out of this joint today. I’ve been in stir for more a week and can’t wait to go home. 

As always it depends on numbers. My doc told me last night that everything is going in the right direction. Here’s the big thing. I’m waiting on Neutrophils.

This is some pretty cool biology. Neutrophils are the most common white blood cells and they can take on much larger infecting cells. They’re kind of like the terriers of the blood cell world and epitomize the old axiom, “It’s not the size of the dog in the fight; it’s the size fight in the dog.”

As I understand it – and I could be a little technically wrong, but I’m pretty close – neutrophils have a life span of about five days and the other white blood cells have a much longer life span. They are also insane and instead of running away from infections, they act like drunken college frat boys spoiling for a fight and run to an infection. Thank God they do. For some reason rugby comes to mind.

Here’s the deal -- a low neutrophil number means a couple of things. First, it means you don’t have enough maniacs looking for a fight with infections and second, since their life span is so short, your body is not making enough replacement maniacs to keep you safe. Like I said these cells are always looking for and finding trouble so there has to be a lot of them.

So I am waiting for my body to produce more of these hotheads and once it does I’m free I tell you, free!

As for other numbers such as platelets and red blood cells, these can be taken care of in an outpatient setting and unlike white blood cells and neutrophils, a shortage does not put me in immediate danger – just long term danger. So I can go home with a deficiency and get “topped off” at the ambulatory infusion center at the hospital (it’s still a major league pain in the buttocks, but it’s okay).

That’s kind of where we are with this thing. More to follow.

Peace to all,

Bill 

The Boys of Bummer

We are in the midst of one of those rare moments when it isn’t about me. I know many of you, like me, are in deep mourning. It is incredibly difficult to discuss if not impossible to talk about without breaking down and sobbing, but there is little else we can do.

I guess I could get mad at the waste, the lost opportunities that will never be realized, but isn’t great traumatic loss always that way? Unrealized potential is always the saddest part of it all – at least it should be.

But there is always that little bit of jealousy that sneaks in when one is snuffed out too soon and others continue on. Why is this one still here and the one we love gone? It’s too sad to contemplate.

Amid this sadness there is little to look to in the future.

All I can say is … I can’t take it. I can’t be philosophical. I can’t consider the good. All I know is the damn Red Sox did it to me again. I’m a frickin’ cancer patient and they still did it to me. While the Yankees hit home runs for the sick, my guys go out of their way to torture the infirmed.

Jeepers! I was feeling better too. Now I’m sick … disgusted … explosive diarrhea seems appropriate … I deserve the pain for being so gullible – again. 

Love to all,

Bill

Cheater

Good Morning Campers:

My sister was worried when I didn’t write yesterday. She was thinking that I must’ve been really depressed, or I’d never miss a day of writing to you. Well um, er, ah … ah that’s the ticket, sure -- only that’s not what happened. I have a confession to make – I cheated on you. That’s right. I’m not proud of it, but it happened. I was philandering with my keyboard – I wrote something for somebody else during time I usually reserve for us.

It’s shameful but true.

I was just sitting up in my hospital bed, cracking my knuckles and getting ready to write something profound when one of the nurses runs into my room, slams the door behind her and runs toward my bed. She grabs my hand, pulls it to her cheek, and begins using it to wipe the still fresh tears from her cheek.

“Mr. Potter,” she says. “Thank the Lord above you are still here. I know it’s a lot to ask, but I need your help.”

“No need to worry little lady,” I tell her. “I reckon you’re safe with me.”

“Do you really think so? I’ve tried so hard by myself and others have tried to help, but sometimes it takes someone like you to help.”

“It’s always been my curse,” I tell her.

“Some men are truly burdened compared to others,” she says.

“To whom much is given, much is expected.”

She steps back never releasing my hand and places a purple Post-It Note in its palm still wet with her tears. And as she does, I remember the night she stayed by my side when others had moved on to other patients. No matter the danger she can count on me.

“I know it’s a lot to ask,” she says.

“Nothing is a lot to ask for you.”

“Well, I have these six philosophy questions due tonight and I was at the beach all weekend and I was hoping you could help me before I leave today.

 “Little Lady, you came to the right hombre. We’ll remind this lowdown-bushwhacking teacher of yours that Governments derive their  ‘just powers by the consent of the governed,’ and the establishment of a law reflects the social compact between the citizens of a republic and its laws.”

Well it kind of happened that way. The point is I cheated on you, but for a good cause. I’ll write more tomorrow.

Peace!

Just one more thing

Dear Chemo 13 Gang Members:

I am really looking forward to building all the mobiles representing moving to the end of this mess. I’m kind of at the point where I hate to mention the health issues I’m dealing with because it almost borders on whining.

Maybe this is my punishment for a life full of whining intolerance. “What’s wrong with you buddy? A broken leg? Hey, shake it off you’ll be fine.”

But apparently the Karmic Equalizer had decided that I haven’t experienced the full range of chemotherapy complications so I must report some stinky news. As part of this life learning process and humility building exercise I’ve been granted Clostridium Difficile, aka c-diff.

Here’s the deal. It is a bacterial bowel infection – nasty already, huh – that results in super diarrhea. I’m talking the explosive, lift you off the commode like an ejector seat kind of diarrhea. I’m talking the kind of diarrhea that disabled armies in the Middle Ages. I’m talking …

I’ll stop talking. You get the idea.

The bacteria is alive and well in all of us. That’s right. You have some roaming around – right now – in your intestines looking for an opportunity to pounce – actually it’d be more like a gurgle, but having something hiding and preparing to gurgle doesn’t strike a whole lot of fear. People with cancer and especially people like me – no not good looking people, but people like me with compromised immune systems—you read Friday’s post—are the ones that get gurgled. I’ve been gurgled.

Your body normally slaps the c-diff bacteria around the way Phillip Marlow dealt with two-bit gangsters in those old movies. If you remember, Phillip Marlow was  – if not dirty – a bit dingy anyway and was often hauled of to the police station leaving the two bit gangster free to run a bit wild and exact revenge.

That’s kind of what happens to your body. Your Phillip Marlow’s are taken for a long walk on a short pier in cement overshoes and the c-diff bacteria gurgles you. People getting high levels of antibiotics (like me) are particularly at risk because their internal good bacteria are getting killed.

The good news is the treatment for c-diff is a pretty easy, targeted antibiotic – which I started last night. So I’m gonna be fine. The great karmic Equalizer has determined I need a little more humility in my live and gave me this gift.

Michael J. Fox says Parkinson’s is the gift that keeps on taking. I kind of see what he means.

hunkered down at the picturesque Christiana Care

I’ve been hunkered down at the picturesque Christiana Care for the past few days licking my wounds and feeling very sorry for myself. Several of you guys have given me a call to make sure I’m okay. I was in a dark place for the past few days, but I feel I’m coming back.

I violated one of the main bits of advice I was given from a cancer survivor friend of mine; I got wrapped up in now and lost sight of the end game. Sometimes now sucks, but it passes.

Except for a runny nose and a gurgling stomach, I’m okay. And even though I should be excited about being at the tail end of this thing, the constant pounding of six months of chemo is caught up with me a little. I only have to push this thing until about mid November – that’s fewer (or is it less than) 60 days. 

Need to keep that in front of me. I just had an idea. I think I might make a few of mobiles to hang around the house and my hospital rooms with the date Nov. 15 hanging down so I can draw some comfort from how close I am to finishing this.

I guess that’s it for now. I’m okay. A little beat up, but okay.

my new room # is 302-733-6235.

New hospital room

My nurses moved me to a smaller private room. Because Neutropenia means you are susceptible to a myriad of maladies, I have to be isolated. Anyway, I was initially brought to cancer floor and they put me in a two person room by myself. Well, like anything else it's about volume so they gave me the small room and are filling my old digs with two people.
Don't know my phone number yet, but I'll post it when I do.
Have a happy Saturday.

Peace to all,

Bill

in the hospital for neutropenia

STRONG/COMMON LANGUAGE ALERT

In deference to my boss Gwen Jones I won’t go on a filth-laden rant this morning. She’d say that’s common and she’d be right. So I will confine my nastiness to one sentence (all of you know I have the technical skills to write a correct sentence that’s two or three pages long); I won’t even do that. This is the shittiest week I’ve ever had and yesterday was the shittiest day.

I am back in the hospital for neutropenia. I am so disgusted I stole a definition from some website instead of writing an easy one for you guys. The long and short of it means I have an infection and have no defenses against it. I am so sick of this baloney!!

This week started with falling on the floor of my home because my legs wouldn’t work right, I moved on to the, “Golly, you don’t have any platelets. You need a transfusion.” That wasn’t good enough though, what week would be complete without a nosebleed component for a guys with no/low platelets. Oh that’s an image you shouldn’t forget – blood pouring out of my nose like a crimson waterfall.

So yesterday I go to the doc’s office to get my blood done and I am told get my fat Irish buttocks over to the ambulatory infusion section and get another transfusion. Okay, no big deal. I do that.

I get home and I’m just beat. I can feel a little chill coming on – this isn’t my first rodeo – so I hunker down under some blankets on my leather Lazy Boy and take a nap.  Have you ever achieved temperature perfection? Well I did yesterday and I wouldn’t come out from under the blankets. Kate comes home from work and asks me what I want for dinner. Dinner? The thought of eating anything makes me want to puke. So I continue to hide under the blankets.

At about 6:30 I finally roll out of my blanket constructed beaver lodge and lie down next to Kate to watch the news in the bedroom. I reach over and touch her and she say’s, “Oh God your hands are sooooo warm.” So I spend the next few minutes rubbing her neck and feet (don’t ask) and it dawns on me that one of the signs of a bad transfusion is a fever. Kate gets the thermometer and it turns out I have a 101.7 fever. The magic number for calling the doctor is 100. So Its about 7 p.m. and I call the doc’s office and they tell me to stop what I and get to the ER. I have to get antibiotics into me immediately and I’m going to be admitted as soon as they find me a bed.

When I get to the ER, they immediately separate me from everyone else, put me in a room for my own protection, and there I am probed, felt up, x-rayed, ignored, and finally sent upstairs to the cancer ward where my nurses are – I am so glad to see them. Well, I’m here for a few days anyway.

It’s all too much.

I guess that’s it for now. My phone number at the hospital is 733-6219.

Peace, love to all,

Bill

Description

Neutropenia is an abnormally low level of neutrophils in the blood. Neutrophils are white blood cells (WBCs) produced in the bone marrow and comprise approximately 60% of the blood. These cells are critically important to an immune response and migrate from the blood to tissues during an infection. They ingest and destroy particles and germs. Germs are microorganisms such as bacteria, protozoa, viruses, and fungus that cause disease. Neutropenia is an especially serious disorder for cancer patients who may have reduced immune functions because it makes the body vulnerable to bacterial and fungal infections. White blood cells are especially sensitive to chemotherapy. The number of cells killed during radiation therapy depends upon the dose and frequency of radiation, and how much of the body is irradiated.

Read more: http://www.answers.com/topic/neutropenia#ixzz1YlSJOMPJ

short post today

Hey gang:
I got chemo through my brain yesterday and have to go back to the doc this morning for blood work and likely transfusion. The next day after the chemo procedure and use of the Ommaya reservoir I feel blue. Today's no different. It'll pass tonight and I'll be okay tomorrow, But I ain't fit to be around today.

Love to all

Bill

Platelets again 9/21/11

Platelets again 9/21/11

I feel much better today than yesterday. I went to see the doc about my legs. He is of the mind that my loss of motor control is due to the rapidity with which I am taken off steroids (e.g. Decadron). He says I am recovering too fast from the episode for it to be some of the other drugs.

I’m skeptical and will continue researching stuff on my own. Regardless, the plan we came up with is for me to stay in the hospital an extra couple of days for observation when I take that final block of chemo and I am also going to get an MRI soon to make sure I have a brain and am neurologically sound.

I had s really cool experience yesterday – I’ll get to platelets in a minute; hold your horses. Anyway, I have this Ommaya Reservoir in my head so the doc can give me chemo and check spinal fluid. There was this lady at the chemo suite yesterday that was very nervous about getting her first treatment through her Ommaya. The nurses, knowing what a holistic and sensitive guy I am, asked me to talk to her. I was glad to do it.

I made a couple of jokes and told her the first time is the worst because the doctor has to find the access, but once that is done it’s easy stuff. I also reminded her that I am a sissy and she was tougher than me, so I might start looking to her for courage and solace – we had a very good laugh. She did very well and was running around the docs waiting room giving me the thumbs up. I have to get mine used today.

Except for platelets, my blood counts were mediocre; nothing great, nothing overly bad. I really need to get tough with the scheduling secretary – you’ll see in a minute. My appointment was at 1520 yesterday and my platelets had plummeted to 17K. Normal is about 150K. The long and short of it is, I needed a transfusion immediately. I knew I would. I started getting nosebleeds yesterday afternoon; it’s call spontaneous bleeding and oncologists hate it. For some reason they want to keep as much blood as they can inside you, instead of on the floor around you.

So anyway it gets a little later and the doc is trying to “get me a bed” at the hospital so they can get me admitted, transfused, and sent home. It was too late in the day to use the hospital’s normal transfusion resources. If you’ve never had a transfusion, they are far more time consuming than you think. There are safety precautions, set up, and etc.

They put me in this thing called the Critical Decision Unit. I think it’s where they put patients while scratching their heads and figure out next steps (excuse this sentence’s parallel structure, oops). Nice folks! By the time all tee’s were crossed, I’s dotted, and transfusions done it was about 2230. I needed two bags of platelets.

At 0900 this morning I go for an outpatient chemo treatment. I usually cry the next day. So we’ll see what happens. You guys have a great day!

Peace,

Bill

A little better -- No Marathons yet

Good Morning guys:

Well, I think I’m out of the woods as far as this not walking goes. My legs still aren’t 100 percent, but I can get around and things are getting better. Maybe this’ll work itself out. Those of you who know me know that physical activity is a big deal to me. The idea that I could suffer some irreversible neuropathy just scares the hell out of me.

I have to go see the doc this afternoon and we’ll discuss this in painstaking detail. I have a bunch of long term disability paperwork to get out the door today and send it to the Hartford. I’m almost late with it because of the hospital stay.

Oh well …

I guess that’s it for today.

Peace to all,

Bill

Scared for sure

Dear Chemo 13 Gang Members:

The past 48 hours have been terrible. I was/am very scared. I haven’t been able to walk. My thighs are not responding as they should. It’s most likely a drug called Cytarabine. 

I think I was joking a while ago that before they give you this drug you have to go through a field sobriety test of sorts to make sure all your neurological synapses work right. You have to touch your nose with your eyes closed, do some alternate hand slapping on your thighs, and swipe the instep of your leg along the calf of your other leg – all my friends from URI have had similar experiences with the South Kingstown Police Department.

When I got home Saturday I lost motor control of my thighs and I fell so hard in my little home office that I’m pretty sure I bounced off the floor. Kate – the saintly Mrs. Potter – scraped me up and carted me off to bed. My speech was slurred and I couldn’t pronounce “difficult” had you put a gun to my head. 

The episodes continued yesterday and eventually I resorted to scooting around on the floor; half crab walking and half-baby scooting. It was all quite undignified. Last night I couldn’t get my legs to work again and spent a few minutes punching my bed out of a level of frustration I am ill equipped to describe.

I feel much better this morning, but I am still scared as hell. If this were a permanent thing, with my legs turning on and off without notice, I don’t know what I’d do.  I’m supposed to get my blood numbers run later at the docs office, but I think we’re gonna have a “Come to Jesus” meeting about this instead.

This happened once before, but the episodes were kind of masked because I was admitted to the hospital for blood problems.

I guess that’s it for now.

Yikes,

Bill

Short, short post

Hey Gang 

It’s 0515 and I’m sitting in my hospital room right now and the nurses (great by the way) just took some blood and we’re waiting to see if my Methatrexate are low enough to send me home, ending block six’s chemo phase. As you know Lymphomas are blood cancers and I think Methatrexate kills cancer cells in the blood, the problem is it is so efficient doing it the docs have to give you -- this is true -- an antidote called Leucovorin to bring the levels back down.  

I still have to work through the nadir and recovery of this round, but I'll be okay -- a bit miserable, but okay.  It’s been a five-day slog of chemo, transfusions, and insomnia. Kind of  tired and beat up right now. We'll see what's, what in a couple of hours.

I probably won't write tomorrow. When I go home I usually sleep for about 24 hours straight. My dog Coco the enforcer will stand guard. 

Peace to all,

Bill 

Pump wars

God Bless America:

Good morning my gang members:

I’m pooped!

I may never have explained this before, but chemo is delivered intravenously and because it has to go in at certain rate it is pump driven, not gravity fed. The pumps directs the fluid through a little plastic encased metal sensor which sends info to a computer processor to monitor the fluids for air bubbles and other things to ensure patient safety. When the pump sensor detect an air bubble they beep and buzz and make this god awful alarm that won’t stop until a nurse fixes the problem.

The procedure for fixing the problem is of course primitive compared to method of alert. The nurse will usually press an eject button, the plastic encased sensor will pop out the pump housing and the nurse will vigorously snap the plastic encasement with a fingernail to dislodge an errant bubble causing the problem.

One of these things beeping and buzzing is enough to drive you to distraction, two will drive you crazy, and more than that sound like a slot machine floor gone crazy. It’s discordant, noisy, and loud. In short it is everything your parents warned about when they commented on modern music. It’s painful.

Hospital staffing is lower at night so when the machines decide – and I think they do decide – to raise havoc in a cancer ward and begin the auditory assault the nurses are overrun. The patients tend to be on the machine’s side as each press the nurse call button to add one more clank to the calamitous clinking cacophony (its cheap alliteration I know, but I’m tired).

So at first the nurses stop, plan their attacks, and then go out in force with middle fingers tucked behind their thumbs like infantrymen ready to fire rifles going on combat patrols.

They nurses usually win the pitched battle in short order with blood blisters trying to form under fingernails. But like that WWII Japanese soldier who finally surrendered in the 1970’s because he never got the word the war was over, there is always one or two of these future Terminators that won’t give in.

Last night one of these last stands occurred in my room. My IV pump it seems was one of the ringleaders determined to go down fighting ‘till the wee hours of the morning. It was nurse against machine; a portent of the coming struggle for earthly domination (A little too strong? I think not. As I write this, another of these pumps has resumed its auditory attack down the hall. I can hear it in the distance.).

At about 2230, just as the chemo patients were beginning to doze off with visions of sugarplums dancing in their heads, the pumps attacked.  The nurses won in a couple of hours like they usually do, but the resistance of lone pumps was unusually staunch.

As the battle at my bedside dragged the pump was definitely getting the upper hand. The nurses ejected and tapped; ejected and tapped, and ejected and tapped some more – all to no effect. Then the nurses began changing the IV tubing in hopes of placating the evil pumps, but that too went for naught. Precious minutes turned to quarter hours and those into hours as 0300 loomed on the clock.

In a final act of desperation the nurses went for nuclear option and changed the pump. This is usually a last ditch action because there are only limited number of refurbished brainwashed replacements. The brainwashing isn’t permanent and refurbished pumps revert back to their dastardly ways once they come in contact with other Terminator pumps. It’s called the Mary Kay Effect.

By 0300 it was all over; just in time for me to have my chemo loaded, blood drawn, pre-meds administered, and quack, quack, quack.

So I didn’t get much sleep last night, but like a modern Herodotus I was there to report to you the struggle of man over machine.

Peace to all,

Bill

humility ?

Good Morning Chemo 13:

It’s 0527 and one of the nurses was able to scrounge me up a cup a Joe and here I am. Things are going okay so far – actually better than okay – I have felt remarkably mediocre so far so I am thrilled. A little fatigued perhaps, but pretty darn mediocre.

I know it’s a little premature to be counting chickens, but I was doing a mental inventory of what the final tally of what it will look like if everything goes right from here on in. I’ve had:

·      A brain surgery

·      A bowel resection surgery

·      More than 800 hours of chemotherapy; I’m talking actual stuff dripping into me (20 work weeks of 40 hours)

·      Almost two months of hospitalizations

·      A blood infection that put me in the hospital for a week, which by the way was the scariest thing I’ve ever experienced and I’m a guy who once had a parachute malfunction in a military airborne operation – that was nothing compared to the blood deal.

·      180 hospital meals – I keep saying I like the food, but I’m lying.

I know I should write about all the good things that have occurred and I will a little later, but as I get close to ending block six’s chemo phase I can’t help but look back on it all with a certain amount of self-indulgent misplaced pride.

Yet even as I type this, my fingers seem to be taken over by my conscience and almost refuse to cooperate because my prideful musings are partially a lie and an insult to the journey; or am I better off saying our journey. Epiphany perhaps?

A lot to consider.

You see my victories are only apparently mine; they are really ours. Every step along this crooked miserable path of diagnosis, treatment, and everything else has been possible because somebody – most likely one of you – has carried me, or at least lightened my rucksack enough so I could take a next step. This short note is neither the time nor place to list each gang member whose support has helped so far, but suffice it to say I am aware of it and that’s probably the point anyway.

I know this woman of great faith and during this journey she has often said, God has given me this gift for a reason. When she says this I usually tell her he forgot to include the return receipt.

But, maybe she is right after all. I wrestle with her idea and look for the larger reason in it all and while there are several things it could be; one of them may surely be about humility. Mine actually – I can be very prideful.

This posting didn’t go anywhere that I thought it would. Hmmm?

Peace to all and thanks,

Bill

Back In the Saddle Again

Back In the Saddle Again

Gene Autry

I'm back in the saddle again

Out where a friend is a friend

Where the longhorn cattle feed

On the lowly gypsum weed

Back in the saddle again

Good Morning all:

Block #6 is off and running and I’m feeling pretty good so far.  I am the luckiest guy around I tell you. I’m getting a little fat from eating a lot of crap, but then again my definition of good nutrition has always been a bit different than anyone else’s. I’m the guy who refuses to listen to anyone about the evil of hotdogs. Talking to me about the evidence against hot dogs is like giving a creationist evidence of evolution.

Anyway it’s not really fat. Rather, it is prepositioned weight loss material. Yeah, that’s it ; it’s preemptive weight gain – that’s the ticket. If the chemo forces me to lose some weight I’ve already built in some fat stores in case I need it. Yeah, yeah that’s it!

Not a whole lot to report otherwise. As is usually the case with first nights, I didn’t get much sleep as the nurses have to come in and check out my vital signs every ½ hour or so.

My run in the bone marrow unit ended this visit. I’m back in general population and have a roommate. Nice enough fellow, but I got spoiled. I like being alone while I’m in chemo. Remember – it is all about me.

I think I’ll sign off now.

Peace,

Bill

Phone number correction

My correct hospital number is 302=733-6216. Oops

I'm in the hospital

Hey Guys
 Just to let you know that I am in the hospital for chemo;  this is six of eight. My phone is 302-733-6447. The poisoning begins after I get a blood transfusion in a couple of minutes. I'll talk to you all soon.

Have a great day.

Yikes!

Bill

Getting ready to go

Good morning all

I lied. I am going to post today. A little one anyway. I am very curious about what is gong to happen today. I suspect my platelets are low and will likely need a transfusion, but will it be outpatient or inpatient since I already have a bed reserved and well frankly, isolating me from the rest of the world is always a good thing. We’ll see and I’ll know by 0930. As miserable as this round of chemo is I’d just as soon get on with it. So cross your fingers and say a little prayer.

Went to a place called Nino’s Ristorante for dinner last night and had the baked Ziti. It earned four out of five chemo bags. Very rich. I guess there’s more than one Nino’s I should really try the Pizza. As I’ve mentioned before, pizza – for me – is a standalone chemo wonder drug. So I should continue my research.

Speaking of chemo 13 approved products. I recently discovered the Craftsman Rear Propelled Rear Bag Key Start Lawnmower. This thing is cool. It starts with the turn of a key and the operator can control the speed of the rear wheel drive by tightening or loosening a little red handle. The only downside is -- this thing heavy and if you are tired or having a not so good day, it’ll drag you around the yard until your wife rescues you, sits you under a ceiling fan, gives you some lemonade, and then tells your sister your being an a**hole (not that I’d know anything about that). Aside from the tail whipping this thing can give you, the key start feature is perfect, as you don’t have to get in a wrestling match with a pull cord. It earns three and a half chemo bags. J

Here’s the real deal –it’s perfect for either men or women so the lawn can still get cut regardless of who is doing the lawn and who is doing the supervising. In the words of Montgomery Burn, “Excellent.”

I guess that’s it.

Peace,

Bill

Here is something to scare you -- me anyway

Came across this little gem of reality this morning. Yikes!  That is enough to focus me for the next few days! I sometimes don't take this cancer thing as seriously as I should because I am doing very well, but I have non Hodgkin's Lymphoma too. This poor guy -- Jeepers!

http://news.yahoo.com/spartacus-star-whitfield-dies-lymphoma-39-004301065.html

Spartacus' star Whitfield dies of lymphoma at 39

LOS ANGELES (AP) — Andy Whitfield, who played the title role in the hit cable series "Spartacus: Blood and Sand," has died at age 39, according to representatives and family.

Whitfield died Sunday in Sydney, Australia, 18 months after he was diagnosed with non-Hodgkin lymphoma, manager Sam Maydew told the Associated Press.

"On a beautiful sunny Sydney spring morning, surrounded by his family, in the arms of his loving wife, our beautiful young warrior Andy Whitfield lost his 18 month battle with lymphoma cancer," Whitfield's wife Vashti said in a statement. "He passed peacefully surrounded by love. Thank you to all his fans whose love and support have help carry him to this point. He will be remembered as the inspiring, courageous and gentle man, father and husband he was."

Andy Whitfield — who was born in Wales and moved to Australia in 1999 — was a virtual unknown when he was cast as the legendary Thracian slave in "Spartacus," a role made famous by Kirk Douglas in the 1960 Stanley Kubrick film.

The series proved a breakout hit for the Starz network and made waves with its graphic violence and sexuality.

Whitfield appeared in all 13 episodes of the first season that aired in 2010, and was preparing to shoot the second when he was diagnosed with cancer.

While waiting for Whitfield's treatment and expected recovery, the network produced a six-part prequel, "Spartacus: Gods of the Arena," that aired earlier this year with only a brief voiceover from the actor.

But in January after Whitfield's condition grew worse, the network announced that another Australian actor, Liam McIntyre, would take over the role.

"We are deeply saddened by the loss of our dear friend and colleague, Andy Whitfield," Starz President and CEO Chris Albrecht said in a statement Sunday night. "We were fortunate to have worked with Andy in 'Spartacus' and came to know that the man who played a champion on-screen was also a champion in his own life."

Whitfield's previous credits included appearances on the Australian TV shows "Packed to the Rafters" and "McLeod's Daughters."

Hospital manana, nurses, and snacks

Good morning Chemo 13:

I don’t have a lot to report today. I woke to find the Dallas Cowboys gave another one away in the last minutes of a game. God, these guys are more trying than cancer – I should know. Fudge – I wanted to use another word that begins with Fu, but I m saving that for the Freaking Red Sox who have begun their September swoon in typical fashion. Following these two teams makes taking chemo seem like a blast! They’re killing me!

Can you believe it’s September 12, 2011? September 12, 2011! Jeepers creepers. I feel like Rip Van Winkle … I’ve slept the summer away. Oh well, I guess that’s how that goes.

I probably won’t write to you guys tomorrow; it’s a hospital day. I’ll go to the doc at 0900, get my blood checked, and head over to Christiana Care if my platelets and hemoglobin check out. I’m a bit skeptical at the moment, as I’ve had a runny nose this weekend and my calves have been aching – for me that usually signals low blood counts, but we’ll see. After I get the thumbs up from the doc, I’ll mosey over to Wawa and get my pre-chemo large roast beef sub with extra meat, American Cheese, lettuce, tomato and mayo. After that I’ll go to Christiana Care and check in – keep your fingers crossed for the bone marrow unit!!! If you have to get chemo for four days, that’s the place. Anyway, I’ll chill out for a little while, take a nap, and begin the poisoning at about 1630 (4:30 pm).

I started reading Seven Pillars of Wisdom by T.E. Lawrence. If that doesn’t cure my insomnia, nothing will.

I have a lot to do today and tomorrow before I go to chemo. I have to finish my long term disability packet, I have to contact the Defense Finance and Accounting Service because I need a new login for the super secure retiree website, I need to fold some laundry, and I need to put my overnight bag together.

I should probably run over to Dunkin Donuts first thing tomorrow morning and buy some coffee for the nurses. You know, I might run over Dunkin get the nurses some snacks first thing in the morning, run by the cancer ward and then roll by the Helen F Graham Cancer center to see the doc. I have to go to Pathmark today too. I need to get some cookies for one of the nurses.

I guess that’s it. I’ll talk to you all tomorrow night or Wednesday morning.

Peace,

Bill

Little adult thoughts

Good Morning all:

I am going with small thoughts today.  The past couple of days have made my head want to explode. To the mundane -- 

Feeling okay today. I have a lot on my mind, but it empties quickly and I forget most things anyway – oh well (that’s actually a joke). Off to the hospital Tuesday for chemo round six of eight.

I can feel that my blood numbers are okay – not great but good enough for the next round. It’s odd, when my platelets are low, I get a runny nose like a fiver year old and if my red blood is low, my calves ache. It’s weird how your body comes up with little warning signs.

Today is bill paying day at the Potter house. I’ll knock that out in a little while, but first I’m gonna go back to bed for an hour or two.

I guess that’s it.

Peace,

Bill

Big adult thoughts

Good morning all:

Big adult thoughts still going on in my head.

I need to drive on with the Long Term disability paperwork. And I need to drive through the finish line with the chemo regardless of what happens beyond that. If it blows up my face … well it blows up in my face. There’s not a whole heck of a lot I can do about that.

It’s all very hard.

One of my many personality foibles that has, over the years, been blessing and a curse is my organizational dedication. I tend to put my organization first – that whole idea of selfless service and organizational loyalty is always a big deal. That manifests itself in getting back to work as fast as possible. Maybe its time to put self before organization.

My doctor is concerned I don’t appreciate how hard this has all actually been and that I may not even be physically, emotionally, or spiritually ready to return to work as fast as I want to given the rigors of the past six months. A lot to consider.

Oh well more tomorrow.

Bill

disability, fear and Murphy

Good morning everyone:

When I first started this blog I said I’d work to be as honest as I could. For the next little while I’ll be wrestling through some really important ideas and trying to figure out my next steps.

There are a couple of things running concurrently in my cancer recovery and return to work life that are causing me great anxiety. There’s really nothing that can done except for me to analyze this stuff and make some adult decisions. Getting my thoughts on paper will at least help me think effectively.

Some background. On or about (o/a) October 17^th my short-term disability through my job at the State of Delaware will end because I will have been on the program for 182 days while fighting this cancer. Had it just been the Burkitt’s Lymphoma, there wouldn’t be a problem because I would have had enough days to go through the eight 20 day blocks of the Hyper RCVAD chemo I am going through. Ahh but two problems snuck in. I did not calculate the original bowel resection surgery into my projections, nor did I account for an additional 15 lost days due to blood infections/levels and some scheduling snafus not of my making.

The result is o/a 17 October I will be on day 15 of block #7 about 25 days short of my completed chemo; with one more block to go.

In anticipation of that, I am submitting a Long-term disability application with the state’s insurer. I turns out that this is not an automatic acceptance thing, but rather an application approval thing. If approved I can get up to 60 percent of my base pay for a period I have yet to figure out. I could get nothing. The thing that really gives me pause is that on the 182d day I am terminated from state service, pending my doctor’s approval to return to work. As I understand it, I have some reemployment rights as far as this goes – but nonetheless I am terrified of Murphy! Remember Murphy’s Law? If something can go wrong it will?

So the major question is: “How much risk am I really accepting?” One would think I could stand on my head and do 25 more days of cancer treatment with or without a long-term disability program, but there are other considerations. If things continue on schedule I would complete the entire eight blocks including recover o/a 12 NOV 2011. My final infusion of chemo drugs would take place on 3 NOV 2011.

God this blows!! I hate being an adult.

So that’s kind of the overall situation – but the Devil is always in the weeds, you know? 

The weeds. I need more info. All my calculations were based on moving smoothly from one block to the next, with little if any complications causing delays – I didn’t build in any downtime. But as I discovered, sometimes you don’t get a vote. But, I also have an ace in my back pocket, I just don’t know how, or if to play it – my cancer is in remission.

Here are some things I have to know.

After the final infusion o/a 3 Nov, what happens next? When do I get the Hickman removed? How often do I have to go to the Cancer Center after that?

Typically how long after finishing Hyper R CVAD chemo do people return to work? Since I am not typical, what does that mean to me?

Do people typically return to full time status immediately?

Am I tough enough to return immediately if I had to?

Given the cumulative effects of the chemo, do the second half blocks have more delays than the first?

Since my cancer is in remission, what is the benefit to continuing chemo, losing my job, and then getting it back again? Does it make more sense to just stop? Are there future insurance considerations if this cancer were to come back? Poop1

Like I said all adult stuff!

The bottom line – I have a doctor’s appointment today and it is time to start figuring the end state. The only thing I know for sure is I need to submit some paperwork ASAP.

Thanks for listening,

Bill

feeling better 7 sep

Good Morning everyone:

I feel like I’ve been in a meat grinder for the past four days, but I’m coming out of it in pretty much one piece. God bless America!

For some reason this last round of chemo has been especially hard – or rather recovery has been especially hard. My hands haven’t worked (neuropathy) quite right, I’ve had some incredibly annoying insomnia, and my stomach has this – and you’ve heard it all before – unrelenting gurgling.

I went to see the doc yesterday and of he was quite happy with my progress. How did he put it? Something like, “I don’t want to make light of your discomfort, but this is all to be expected. You’re actually doing very well especially when you consider the intensity of what you’ve been through.”

He said that all my numbers are trending up and things look like they’re going the right way – meanwhile I want to puke in a bucket. If I didn’t laugh, I’d cry.

The doc seemed to think the five rounds of chemo thus far are finally catching up with me a little and I am experiencing some cumulative affects from it all.

Went to bed at 1930 (7:30 pm for you non-nursing or nonmilitary types) last night. Man that was a great idea. I slept from 7:30 to 2 am, got up, had a bowl of cereal, and then went back to sleep ‘till 0500. I feel a lot better today.

I guess that’s it for now.

Peace,

Bill