Wednesday, August 31, 2011

Wednesday, August 31, 2011

Dear Chemo 13:

Happy last day of August all. I don’t have a lot to report today. My plan is to hunker down watch some TV, ride the recumbent bike, and maybe go to lunch with my boss. I understand she is off this week. In fact when I get this done I’ll send her a note too.

I have a bunch of thank you cards to write. The problem is that my damn hands don’t work the way I want them to. I think I’m having some neurotoxicity crap going on – it should pass in a few months. Sometimes I just can’t grasp things, you know like a pen or a guitar pick. Playing the F chord on the guitar is almost impossible right now.

I’ve been toying with the idea of going fishing one day, but I am supposed to stay out of direct sun – kind of like the Eric Northman. Anyway I’m thinking that next month when it cools down a bit, I just might take a pole and spend the morning at the CD canal drowning a few worms.

I have this great fear though, that a special agent from the Insurance Company will spy on me and decertify my disability claim because I spent the morning relaxing with a fishing pole instead of holed up in my house bombarding myself with Jerry Springer and Maury.  How’s that for a little paranoia?

Ho hum.

Speaking of disability claims, I have to fill out a book-sized application as my short-term claim expires and I access long-term resources. Long term is such a misnomer. I only need about 45 days beyond my original plan to finish off my chemo, get the Hickman Port uninstalled, and go back to work.

I made some miscalculations on my calendar. First, my short-term disability started from the bowel resection in April and not the cancer diagnosis in May. So I lost almost a month of time in non-cancer related activities (life saving nonetheless I grant you, but not chemo). I thought I was on ordinary sick leave. And then I lost almost 15 days dealing with dangerously low blood counts and potential infections that saw me carted off to the hospital at one point. Ten of those days could have been used for chemo had I known more about safe levels vs. normal levels.  Oh well.

I guess that’s it for today.

See you guys later,

Bill

Billy Boy update

Good Morning Everyone:

A little Billy Boy update to start you on your way this fine day.

I got home late Friday afternoon after five days of chemo. As I think I mentioned over and over again, that was number round five of eight rounds. My best guess, at this point, is I will go back in for round six o/a 12 SEP 11. What kills your schedule is the nadir and recovery time after that. 

Special Request – Because I’ve lost so much lean muscle mass (about 30 pounds of it actually), I am putting together a home gym of sorts in my garage. I’m almost done, but I need something. What I am looking for are two used 50 lbs. standard barbell plates or two used 45 lbs. Olympic plates. If any of you guys know someone who has those weights hanging around gathering dust and wants to let them go incredibly cheap, let me know. Cough … cough … after all I have cancer … cough and cheap is the operative word … cough.

I guess that’s it for now. Just a quick update.

Peace to all,

Bill

survived the hurricane

Good morning everyone:

We all survived the big hurricane. Well if you’re not reading this, than maybe you didn’t. Anyway I’m kind of in an incongruent mood today. Actually it’s more of a “things that make you go hmmm” kind of mood.

First a sign in the chemo ward. Hidden in plain sight at Christiana Hospital cancer ward is a little wooden plaque with one of those blue pieces of metal strips on it with this inscription, “We may not always cure; but we can always care.”

Huh? What the fudge? We may not always cure? I need to get to a hospital with a better sign. That’s like saying, “Geez we really tried that time, but oh well … shit … at least we cared.” I want a sign on the wall that says something like … I don’t know … “We will cure you or die in the attempt with you.” “We will cure you or all these doctors get fired and your survivors get a full refund.” Something a little more committed and substantive would be better.

Second – Glen Hurricane Schwartz. Watching most of the local hurricane coverage was like watching a telethon gone bad. One of our Philadelphia stations has a meteorologist named Glen “Hurricane” Schwartz. Now one would think a guy who moniker was “hurricane” would be up for a major hurricane disaster. Well at first it seemed like he was, and then all of a sudden it got really strange.

To be fair I’m not sure how long he had been up broadcasting when I saw him the other morning, but when I saw him he had been reduced to reading graphics off the TV screen – you know wind speed, barometric pressure, temperature, and the like. It was really bizarre. Then he went on this rant about water saturation.

“Weatherman in Florida are laughing at us,” he said. “Why are you so worried about category one hurricane they ask me? Well, they don’t know how much water we already have in the ground. I’ve gotten calls from Louisiana, they’re laughing too. They just don’t understand how much rain we’ve already had this month.”

I didn’t see him on TV again for the entire hurricane. 

I kind of felt like Woody Allen in Annie Hall when Christopher Walken is extolling the virtues of driving headlong into oncoming traffic and Wood Allen says, “That’s all very interesting, but I’m due back on Earth.”

Well it’s 0540 and have a 0920 doctor appointment, so this’ll have to do.

Peace,

Bill

Saturday 27 aug 2012 -- home at last

Good morning folks:

It’s a little after 0500 and I made it home safe and sound; a little tired, but that’s life in the fast lane I guess.

I have this office space in my house where I write and poorly play the guitar. You know how when you’ve been away for a while you look at things with fresh eyes? I need to clean this rat hole up. I’ve got sheet music and guitar books and old photos everywhere – Yikes.

Well the hurricane gets here tonight and I think we’re ready – as ready as we’re gonna be I guess. My junky room came to a head yesterday when it became apparent I couldn’t find this really cool emergency radio we’ve had squirreled away. Typical huh?

It appears my plans for a Snidely Whiplash moustache are falling on hard times. I’ve been growing this thing under my lip and it is so white that it looks bleached. I may have to go with a big old white thing like that dad in the motorcycle show.

That’s it for now. Tomorrow – Heroic tales of my overcoming adversity amidst chemo while defying mother nature’s wrath (that’s if my wife lets me).

Bill

going home to Irene

Good Morning:

Well I’m going home today after I finish off an infusion of red stuff (a.k.a Doxorubicin) at about 1030 and get a blood transfusion so I can be strong like bear during hurricane. With any luck I’ll be home by 3 p.m.

Feeling really good today. I had the blues yesterday for a while. I guess 90 hours of any type of chemo infusion gets to you after a while. Oh well.

Hurricane Prep –

If the force of my personality doesn’t keep Newark safe from Irene, I guess I’ll just have to revert to mortal approaches.

Anyway, I’m thinking I have a Coleman camping stove hidden around the house somewhere. The good news is you can’t use it in a house because of CO poisoning so that might help me avoid burning my house down.

Of course I have a very handy electric chainsaw I can use if I lose one of my huge pine trees in my yard and the power doesn’t go out (what are the chances of that?). It’s always important to have the right tool, for the right job.

I wish my dogs were better trained and they could carry stuff around the house for me instead of hiding under the beds – maybe they know something I don’t. I guess that’s it for today. Enjoy the hurricane and I’ll write ya tomorrow.

Bill

Stickers Schlock

Dear Chemo 13 members:

About a week ago I handed it out Chemo 13 gum-backed sticker logos to all the nurses and other staff as a way to show our soul-felt solidarity as part of my personal battle with cancer. Simply, my gang is my power over this thing and symbols are an important attestation of that unity and common sense of purpose.

Well, it turns out the stickers I made on the kitchen table at the house may not be sterile enough for the other patient and could cause bacterial microbial stuff to be inadvertently pushed from room to room. So the nursing gang members had to take the stickers off their name badges. As always patient care comes first, and I thank the hospital leaders for their preemption in this regard, but I would be remiss if I did not tell you about the high quality production process those stickers went through. It’s not like I’m a toy painter from the People’s Republic of China.

Coco's vigilance

Buzz waiting to ponce

When I made those stickers I only dropped a little mustard on one-batch, which I was able to wipe off by dabbing a napkin on my tongue and re-use the mustard on a Nathan’s Hot Dog. See, only the very best – I’m fine and that mustard was only there for seconds before my Yorkshire Terrier Coco, alerted me that Buzz, my white constantly shedding Spitz monster and lover of hotdogs, was making his own break for the tube steaks while I was in the bathroom. He didn’t get many dogs thankfully because Nathan’s does give him a stomachache. But when cornered he too eventually assisted in the clean up – remember dogs mouths are cleaner than humans or cats; they’ve done studies.

After I picked Buzz’s hair off the back of the glue on the back of the stickers (each sticker was individually inspected for crinkling) everything is good as new and each sticker clean as whistle and approved by Buzz or me.

To be sure though, I even packaged them inside a sealed plastic lunch bag for the journey from my house to the hospital. And just to show what a good ecological steward I am, I even embraced the 3-Rs of environmental resource management – Reduce, Reuse, Recycle for transporting the badges by reusing one of the empty bags from my wife’s lunch box. Now you can say what you want about me, but my wife keeps a pretty clean lunch bag and if she has an empty plastic bag – zip lock no less –with only a few errant breadcrumbs to be emptied then that baby and its contents are pretty darn clean.

There you have it, the most stringent method of sticker manufacturing applied by a man and two of his dogs in an effort to bring small therapeutic doses of faith, hope, and charity from a little kitchen table in Newark, Delaware.

BTW go to http://tipnut.com/25-helpful-items-to-remove-sticky-adhesive-goo/ for tips on how to remove sticky backing.

Peace to all:

Bill

new platelet #

147


My platelet number today!!!!

Earthquake I missed

Good morning Chemo 13:

Things are good here. I feel remarkably good. I don’t know why, but I do. It’s just before 0500. I only got a little sleep last night, but that’s okay. I’ll take a nice long nap later.

I somehow missed the earthquake yesterday.

I just got finished riding the recumbent bike in the bone marrow unit and was walking down hallway with my IV stand in tow and several bottles of health elixir (I’ve changed it from poison) pumping the cure into my veins. I’m heading to the vending machine to supplement my world famous health diet with a Gatorade. I only have $1.75 and there is no change machine to break a five, so my choices are limited.

I decide to visit the nurses down in regular cancer ward to say hi. The bone marrow unit is division 6C while the cancer ward is 6B. For the past few months there have been renovations go on. I am told that is why I’ve been getting my sweet digs in the bone marrow suite; I think it is because I am so cute. One of the renovations is adding fire doors between the divisions. So as I head to 6B I am stopped dead in tracks – not by the new fire door, but by the sign on the new door.

 STOP!

Elopement Caution

Please Close Door

One of two things is going on here.

• There is a nurse (or nurses) on the on other side of this door who are so important that their running off to get married will so devastate 6B that a general warning has been posted to alert the public and staff. 

OR

• It is the most flagrant use of sign gobbledygook I have seen in a long, long time. It is akin to “Please extinguish all electric illumination before exiting this facility or any of its classrooms,” or more simply said turn off the lights before you leave.

After a bit of research I discovered an elopement means to “run away” although most often used in the traditional run-off marriage sense, there is also an emerging hospital field of policy complete with lingo for stopping patients from wandering off or running away.

After a bit of cogitation I’ve determined it is the sign refers to the first option. I mean after all, who’d post a sign most people won’t understand. That’d just drives me to distraction and make me want to wander off.

But, I digress. All the divisions have these enclosed stations where all the admin work gets done. They're the first thing you see when you move from division -- to -- division. They’re traffic islands plopped in the center of the normal flow of – well traffic. Each has a couple of computer stations, reference material, food service managers, social workers, and etc. You almost never see nurses congregate about.

So I get to 6B and the area around the admin area is packed. Nurses are frantically dialing cell phones.

I have my IPod on and the Rolling Stones blasting and all I can see is them mouthing something like, “Can you get through.”

 Everybody seemed a bit distracted by what I thought was a cell phone glitch so I figure I'll leave them alone and I wander back to the bone marrow unit.

When I roll back in (BTW bone marrow is sealed off from the rest of the hospital due to disease infection concerns) the nurses start asking me, “Where have you been? Did you feel that?”

“What are you talking about? I asked.

“We just had an earthquake.

“All the cell phones are out,” Another nurses said.

“Get or here,” I said. “No way.”

“You didn’t feel that?” one asked me.

“Not a thing.”

From another room a bone marrow patient who recently had a transplant stuck his out of his door and said, “The news says it was 5.8 and it originated in Virginia somewhere DC.”

“Maybe the politicians agreed on something,” I joked, but nobody got it.

The excitement died down a bit later and I went back to my room. It was all pretty fun.

That's it for today,

Peace,

Bill

In the hospital and doing great -- August 23, 2011

In the hospital and doing great -- August 23, 2011

Good Morning!!!!

Well it’s about 0500 and I’m back in the Hospital and things are going pretty darn well. I am in the Bone Marrow Transplant Unit and I’m living large (I’m getting large too – yikes). Oh well!

My room phone number is 302-733-6124. Just so you know the phone is on one side of the room and the comfy chairs are on the other. After I am hooked up for chemo and the IV pumps are going I usually sit in the comfy chairs or go for a walk. Lying in bed is a no-go for me. The point is when the phone rings it can be quite a production to get to it; I often don’t answer it in time.

Remember last week when I mentioned my blood and platelets were bouncing back, well they sure have. My platelets were 37,000 Thursday (that’s not good! 50K is considered safe for chemo) yesterday they were 121,000. That is cool beans because although still a tad low from normal (140,000 is normal), I can pretty much do any kind of workout I want and not hurt myself. That is a big deal to me.

I bought some of those exercise bands a couple of weeks ago and held off using them. I used to think they were for pansies, but like many things these days, I’m discovering I was wrong. Those things can really kick your buttocks. BTW if I sat down and wrote a blog about all the things I discovered I am wrong about it, would fill up the entire Internet.

I do have one negative to report. My chemo stays usually start off with an intravenous cocktail of Benadryl, and Demerol as a prep for the first chemo drug called Rituxan. If I don’t get the cocktail I get violent shakes called Rigors. Anyway, my little cocktail can get you pretty stoned for about an hour or so. It was one of the few fringe benefits of chemo. Now that I’m getting used to it, the effect is less intense than it used to be. Now it’s like going to a tailgate party when someone forgot to bring enough beer. C’est La Vie! Isn’t that the way it goes?

T minus 1

Sunday, August 21, 2011

Good morning Chemo 13.  I probably won’t post anything tomorrow. It’s up bright and early to the doc and off to the hospital. I’ll be spending most of today hanging out, washing some clothes, and getting my nurse bribes together.

You guys don’t think quality healthcare comes just from good doctors, good hospitals, and great nurses do you? It comes from bribes – especially bribes to the nurses and the kitchen staff.

It’s like the old saying, what two branches do you need to fight a war? The answer is infantry and finance. It’s the same with hospitals. What two groups run the hospital? Nurses and food service.  They are the two groups I love them most anyway.

Back to my hospital stay. I have lucked out in recent weeks by getting a bed in the bone marrow transplant unit. They give you a private room, a TV that works most of the time, and access to the bone marrow units exercise stuff. Cool beans. The regular rooms are okay and if you get a good roommate it can be – well as good an experience as chemo can be. The fact of the matter is, most cancer patients tend to mediocre roommates. They’re usually distracted, asleep, or self-obsessed (go figure huh?).

So we’ll see –what’s what tomorrow. This will be block five of eight. I’m on the downward slope of this thing. If my blood/platelet numbers hold up I can be done in about 80 days and it’s back to work and fixing stuff around here (and at my brother’s new house).

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

Bill

Why Inpatient chemo

Dear Friends:

Well the good news is my platelets continue to multiply, the okay news is I go back in the hospital probably Monday.

A few people have asked me why I have to go to the hospital for chemo when everyone else they know does it in some kind of outpatient status. That’s easy – I’m special.

Oh alright I’m not that special, anybody with Burkitt’s Lymphoma gets the same stuff I get. But boy—oh—boy it is some nasty stuff. During my first chemo trip the nurse comes in wearing a yellow plastic protective smock, a protective clear plastic visor over her face, the obligatory gloves, and an IV bag full of red stuff.

So I say, “What’s with the outfit?”

“We can’t get this stuff on us,” she says. “It can really damage your skin.”

“And you’re putting it inside of me?”

“Oh don’t worry,” she says. “It won’t touch your skin. It goes right in your IV line.”

For some reason that answer seemed to make sense when she said it, although it doesn’t today.

Besides the downright nastiness of the drugs they have to be given in a specific sequence over 100 – 120 hours. IV bags are changed in the middle of the night, I am given neurotoxicity tests at all hours (very similar to field sobriety tests), and blah, blah, blah. Anyway the point is that this cancer requires one of the most intensive, aggressive, and dangerous chemo protocols around. You just can’t do it in an outpatient environment.

The aggressiveness of it all has its own rewards though. It doesn’t drag out the chemo. Eight sessions and I’m done! Cancer gone and I get my life back (if the side effects don’t kill me). As you all may remember, I begin session five Monday.

I guess that’s it. Oh wait! All my blood numbers are creeping back up to “safe” levels. We’ve long ago given up on normal and are dancing with safe versus unsafe. I asked my doc about this and he said that low blood levels won’t kill me, but the Burkitt’s will. I need to be careful about staying focused on the real danger, he says. My blood will bounce back later.

Now I guess that’s it. See you guys later.

Peace,

Bill

Same as yesterday

It's a slow news day. I'll update you guys in a few hours. seeing the doc at 10 its about 7 right now.

Peace,

Bill

Not much to report

Wednesday, August 17, 2011

Good morning Chemo 13. I really don’t have a lot to share with you today. I had great night’s sleep and didn’t need an Ambien or anything. Since starting chemo, insomnia has been a real pain in the butt so my doc prescribed Ambien, but I want to be careful about using them. I don’t want to get too dependent on sleeping aids.

I got a really nice card the other day from an old high school chum. Thanks Mike!

Between fighting with blood issues and chemo in general I have been a bit self-obsessed lately and haven’t been answering emails as well as I should, I apologize to everyone who is still waiting for me to send a note. Oops!

Off to the doctor tomorrow to see what my numbers look like and then we’ll go from there.

Peace

Bill

Blood mo better

Dear Gang:

I’ve been betrayed. If I could beat my body out of our gang – I would. You know what my turncoat body did? It’s unspeakable I tell you – just unspeakable.

I go to the doctor’s yesterday with just the right amount of “jeepers creepers” remorse that my platelets and red blood cells aren’t responding and we’ll probably have to cut short the chemo program (while I ride the remission horse into the sunset). I had it all set -- my fake devastation and disappointment and my consoling pat on the shoulder to the doc. “It’s okay, doc. I’ll be fine.”

You know what my stinking bone marrow does while I’m rehearsing and fantasizing about an early return to work (I hope everyone at DOL read that). Yup, you guessed it. It screwed me! My innards magically began to produce platelets, red blood cells, and hemoglobin. Can you believe it?

Now I’m screwed ;it’s back to the chemo chain gang. Oh well, I go back to the hospital when my platelets get above 50,000. They were 17,000 yesterday. Since my Benedict Arnold body is now producing platelets again it should move pretty fast. If I were a gambling man, I’d say early next week, although I plan to pack a chemo bag for doctor’s visit Thursday – just in case.

Joking aside, I was very worried we had done permanent damage to the platelet producing capacity of my body. This is very good news.

Back in the high life again

Good Morning Chemo 13:

It’s 0545 and I’m sitting here with the best of coffee I think I ever brewed. Ever have that experience? It’s pretty rare.

MY original schedule was for to begin round five of chemo tomorrow, but I’m pretty sure that’s not happening unless some blood count miracle occurred this weekend. But I feel pretty good.

I had my ITunes on shuffle this weekend and I stumbled on the Steve Winwood song “Back In The High Life Again” I hadn't heard it in years and I thought it made a perfect cancer theme for us. I’ve copied it below for you guys. I also have the guitar chords for the players among us.

Today I am running by the doctor’s office to get some blood drawn and then we’ll go from there. I have some overdue books at the cancer library I have to return. I hope they don’t make me pay a fine in platelets. And my big deal is I have to fight with my health insurance about referrals and other assorted stupid stuff.

 Pretty mundane stuff I think. more to follow.

Back In the High Life Again

Performed by Steve Winwood Written by Warren Zevon

Transcription by: http://tabs.ultimate-guitar.com/w/warren_zevon/back_in_the_high_life_again_ver2_crd.htm

Capo III

D G  D A 2x

   D               G          D               A

It used to seem to me that my life ran on too fast,

      D              G              D                   A

and I had to take it slowly just to make the good parts last

    D                   G           D                 A

But when you're born to run it's so hard to just slow down,

   D                     G                   D              A

so don't be surprised to see me back in that bright part of town

        D           A          D

I'll be back in the high life again,

G               D                     A        D

all the doors I closed one time, will open up again

        D           A          D

I'll be back in the high life again,

G                 D                     A                 D

all the eyes that watched me once, will smile and take me in

         G                    D

And I'll drink and dance with one hand free;

A                  D            G            D

let the world back into me, and oh I'll be a sight to see;

            Asus4 A     D

back in the high  life again

D G  D A 2x

    D              G       D                    A

You used to be the best to make life be life to me,

      D                      G                    D                A

and I hope that you're still out there and you're like you used to be

      D                G              D                      A

We'll have ourselves a time and we'll dance till the morning sun,

          D                  G              D                     A

and we'll let the good times come in and we won't stop till we're done

         D           A          D

We'll be back in the high life again,

G               D                     A        D

all the doors I closed one time, will open up again

         D           A          D

We'll be back in the high life again,

G                 D                     A                 D

all the eyes that watched us once, will smile and take us in

          G                    D

And we’ll drink and dance with one hand free;

A                     D           G             D

and have the world so easily, and oh we’ll be a sight to see;

            Asus4 A    

back in the high  life

         D           A          D

We'll be back in the high life again,

G               D                    A        D

all the doors I closed one time will open up again

         D           A          D

We'll be back in the high life again,

G                 D                     A                 D

all the eyes that watched us once, will smile and take us in

            Asus4 A    

back in the high  life

home now

Dear Chemo 13:

Sorry for not posting Friday, but I was blue. I didn’t actually turn blue; I was in blue flunk – which is different than seeing red, or turning green with envy.

Anyway, I am home after busting out of the bone marrow unit Friday

Quite a bit to think about. My numbers were still kind of low Friday, so they topped me of with two units of tasty O + and and one bag of platelets and sent me on my way. I feel like I consume more blood than Eric Northman (from the TV show True Blood).

Anyway we have arrived an unexpected place in this cancer journey.

• Þ    If my numbers don’t bounce back, I can’t take the next chemo;
• Þ   My platelets have been dropping off for a month from the cumulative effects of the chemo. (geez I feel like I’m listing facts for a staff study);
• TThere  is no telling when the platelet #’s will bounce back – some patients require months for the body to repair itself; other bounce back quickly

AND HERE ARE THE BIGGIES

            My cancer is in remission.

            All other health functions look good

            I feel okay

            I am incredibly handsome (okay not really)

As it takes longer and longer for my body to recover from the Hyper R-CVAD chemo, how much longer can I go until the time between blocks makes the treatments ineffective? In other words, is there a maximum time between blocks? Do we move from a 20-day cycle to a 30-day cycle? Is that possible/desirable? Do we drive on until the time between rounds becomes ridiculous? Do we do nothing (which is always an option) and see what happens?

My doctor and I have chatted and the one thing we know is remission gives us some wiggle room to weigh options.

The other thing is this platelet thing could turn around tonight and then it’s off to chemo.

I guess we’ll just have to wait and see.

I got up early today 0400. I went to bed at about 2130, so that’s about 6-½ hours sleep. Not too bad. I’ll get some more in few minutes (feeling kind of drowsy right now), but I wanted to get some kind of post out to you guys in case you read this with your Cheerios.

            I have a little tiny fuzzy moustache that has taken me five weeks to grow. It’s not that I have been purposely trying to grow a moustache a 14-year-old would be proud, it’s just that I haven’t needed to shave thanks to the chemo.

Now, now, men don’t be jealous. I should get some kind of fringe benefit from all the chemo and if it’s not having to hassle with shaving, that’s fine with me. I must admit though, that I miss a steaming hot shower, softened beard, a cup of warm shaving lather applied with a horsehair shaving brush, and the long luxurious strokes of a sharp razor. That’s shaving at its best. This isn’t “run out the door late for work” shaving, this “early morning, plaid cotton pajama bottoms and long sleeve tee-shirt, cool autumn weekend” shaving. The only thing better than that is replacing the shower with a soaking bath so hot you can barely stand it, while sitting in the tub with a tumbler of Jameson’s on the rocks.

Back to my imperceptible moustache. When this is all over I plan to grow a big bushy Montana wax-tipped handlebar moustache. It’s going to be so big and out of context, that’ll distract people at meetings when I go back to work. I’m talking an enormous cowboy-stache. I’m going to twist the sides up so I look Snidely Whiplash.

I forgot how handsome ole Snidely was ‘till I found this picture. I may have to get the hat too. I mean they really do go together. Although I probably won’t go so far as tying damsels to railroad tracks; there’s always a Dudley Do-Right around when you start doing that.

            Those are my big goals for when I finish this cancer thing. 

A little brighter -- August 10, 2011

A little brighter

August 10, 2011

Okay, yesterday was little dark I guess – maybe just a tad. There’s still something in me I want to put on the page, but I just can’t get it out. Well one thing’s for sure it won’t be today. Maybe my sarcastic leanings are where I should begin. After all Vonnegut was able to become one of America’s/the world’s finest writers with imagination, sarcasm, and symbolism. HO HUM

I’m feeling a lot better today; my white blood cells are clawing their way back, my hemoglobin is also nudging it’s way to “safe,” and my platelets are still all over the place. Even so, that’s still pretty good; I’m more optimistic than I’ve been in a while. You do get a little stir crazy sitting alone in a hospital room all day and any good news has a way of brightening your mood.

I’m feeling so much better that one of my main concerns is if the Denver Broncos vs. Dallas Cowboys preseason game set for Thursday night will be on a channel I get in this hospital. There is one channel on my TV that gets no sound, so we’ll have to see. But, if I am still here Thursday night, I’m may have to initiate a covert operation “Pizza Dawn.” But to get to Thursday though, I have to go through Wednesday and here I have a guilty pleasure I’m embarrassed to admit – the CBS reality show Big Brother. It’s trite, stupid, and symbolic of what’s wrong with American Television -- it's perfect. I may have to patrols out to capture some potato chips and soda for that one.

With all these super intellectual plans for TV watching, I suspect my viewing will be from room 6C23. We’ll see. Regardless, I’m feeling pretty good – so there!

That’s it for today,

See you tomorrow,

Bill  

feelings I can quite articulate

HIi guys this is a depressing post. 

There is something inside of me I can’t seem to get on the page. It’s dark and it’s persistent. Whenever I start to type it, to form it, to put a face on it, I get distracted. I chicken out. It’s too close to the bone. It lies somewhere between reality and metaphor.

I was told once that artists reveal publicly what others hold privately. If that’s true then artists are the most courageous people; the hard part of course is coming to grips with what you hold privately.

I looked in the mirror yesterday and in the past four months my looks have changed. My muscles—once toned and virile—are now limp bruised, constantly sore, and regardless of how hard I try seemingly atrophied. My face has tiny micro-lines, denoting an age I haven’t attained. I have a big bulge on the top of my head that will always be there; it announces my Chemo Reservoir.

Oh I understand some of this temporary, some of this permanent, and some of this is only empathetically understandable. And I hesitate to talk about some of this because to do so seems like a step toward surrender and acceptance of some new normal that I instinctively know just doesn’t make sense.

But, this past week has been completely revealing. I – a pronoun that surely has no place here but I’ll have to use it anyway. I watched my blood levels drop and have had multiple transfusions and antibiotics to bring my body back to a place where it can sustain itself to begin the next round of chemo next Tuesday. But me, I, feel like bystander in all this. I bring the body, they do the procedures, and I – the thing that makes me, me – take the body home and feel every nausea, every ache, and every sleepless night. While my body and science fight this out I’m left to take communion and pray to a God that I’m not sure is interested in individual suffering anyway. If so God would … That’s presumptuous for sure, but that’s part of this thing I can’t get on paper. 

This whole episode has reinforced that no matter how hard I try, I can die from this and there is little I can do about if my body won’t cooperate. I don’t expect to, but this lymphoma could take a left turn, reappear, and kill me. am today. Stealing from Matthew, 26:4 “the spirit is willing, but the flesh is weak." It’s probably more accurate to say, “the spirit is willing, but the flesh does whatever the hell it wants to.”

I recently stumbled up this John Melencamp Song that kind of encapsulates what I’m feeling.

Longest Days

It seems like once upon a time ago

I was where I was supposed to be

My vision was true and my heart was too

There was no end to what I could dream

I walked like a hero into the setting sun

Everyone called out my name

Death to me was just a mystery

I was too busy raisin up Cain

But nothing lasts forever

Your best efforts don’t always pay

Sometimes you get sick

And you don’t get better

That’s when life is short

Even in its longest days

So you pretend not to notice

That everything has changed

The way that you look

And the friends you once had

So you keep on acting the same

But deep down in your soul

You know you got no flame

And who knows then which way to go

Life is short even in its longest days

All I got here

Is a rear view mirror

Reflections of where I’ve been

So you tell yourself I’ll be back up on top some day

But you know there’s nothing waiting up there for you anyway

Nothing lasts forever

And your best efforts don’t always pay

Sometimes you get sick

And you don’t get better

That’s when life is short

Even in its longest days

Life is short

Even in its longest days